Her voice so soft, like a whisper.
Most times even approximate, but none the less
it is sweet music to my ears.
~Janet Harrold
Most times even approximate, but none the less
it is sweet music to my ears.
~Janet Harrold
Sep 30, 2010
How Strong You Are
You may never know how strong you are, until being strong is your only choice.
~Unknown
~Unknown
Sep 29, 2010
Charlotte's Story
Charlotte was born on June 30, 2005 after a physically easy but emotionally difficult pregnancy. She was our first child and had been diagnosed at about 22 weeks gestation with partial trisomy 16 and partial monosomy 9 after a few few "funny" findings on ultrasound and finally an amniocentesis. This meant she had an extra piece of chromosome 16 and was missing a part of her 9th chromosome. This was a very rare finding--there can be any number of unique chromosome arrangements and the doctors were unable to find any other cases like hers in the literature. We were told I would most likely miscarry before birth, or that our baby girl may survive a few moments. We were also told that this was the best case scenario, because otherwise she would "stare at the ceiling until she died" and never recognize us or have any quality of life. We also found out my husband is a balanced carrier for this translocation.
When she was born--much larger than expected at 6 lbs 5 oz and beautiful beyond description--we were thrilled when she cried and breathed with very minimal intervention. She stayed in the room with us after her birth and was passed from family member to family member for hours. When it became clear she wasn't going anywhere, the nurses came in and we gave her a bath right in the room.
Charlotte was a sleepy baby and had to be woken up in the night to eat. She ate well from a bottle but unfortunately did best on Nutrimagen, an expensive and smelly formula. We were thrilled when we were able to switch her to soy. She was very prone to terrible diaper rash and grew slowly, but we were happy for each day we had with her.
Charlotte was growing. She smiled and giggled but didn't make eye contact or reach for toys. She had been born with trigoncephaly, which meant her forehead had fused into a point. We had been told by the Neonatologist that this was because she had no frontal lobe to make her skull form correctly, which, he pointed out, was the center of personality. Charlotte's Orthopedist who casted her crooked foot asked us what we were doing about her head, which we said wethought was just a cosmetic issue. He sent us right across the hall to a surgeon who suggested an intense 8 hour surgery. He explained that her brain (which we thought was nearly non-existent) was unable to grow with her skull sutures fused and it would be in her best interest to have the sutures opened to allow for optimal growth and to reduce the risk of seizures and other problems. I was so happy to have a doctor looking out for Charlotte and her future, and we decided to go ahead with the surgery.
Charlotte got a little red wheelchair for her 3rd birthday and started preschool later that year in 2008. She had learned to sit up on her own and was clearly quite proud of herself. She was learning to wear her hearing aides and seemed to be understanding a few signs. She was affectionate and happy. She also had a new baby sister Ella, who was born healthy in October 2008. It was frustrating but kind of fun to watch Charlotte go through the usual jealousy that comes with a new baby. She would glare and refuse to look at Ella, throw fits when I fed her and try to bite Ella if she was able to get close enough. Within a couple of weeks she got used to having her around, but we still had to watch out for the biting.
In February 2009 Charlotte spiked another fever and her oxygen need went up. We went to the ER after much prayer and she was diagnosed that night with RSV. I was actually relieved that it wasn't heart failure. Over the next few days Charlotte did not improve and soon had pneumonia as well and was in the ICU. On Saturday February 21 we called our families together and everyone came to say goodbye to Charlotte. It was like an echo of her birth day--the family all together in a hospital room passing around a now-much-bigger baby and giving her kisses and crying over her. She passed away very peacefully surrounded by those she loved and who loved her.
We began exploring our options, and decided to make a decision in February 2010. In late January I was asked by a woman at work if we were interested in adoption. I said yes and within weeks we had met an amazing young woman who was expecting a baby girl in May. The weeks flew by and Ava joined us on May 5 2010. Two month earlier on March 5th, I had discovered I was also expecting again, despite the fact we had taken precautions. I also felt fairly strongly that this baby was not healthy.
We have many fears. We always wondered how we would ever handle Charlotte's appointments and hospital stays if we had other children, and now we have two other very young girls. We are not looking forward to watching another child suffer through medical procedures and are praying hard that Lily will not suffer from pulmonary hypertension and not need 24 hour a day oxygen. We also look forward to using all that we learned while Charlotte was with us to help Lily reach her fullest potential. We are excited to have another very special spirit in our home, and have to believe that this is God's plan for our family, and an extension of that commitment we made years ago to place our baby and our lives in God's hands. In the end if we have faith this experience will be for the betterment of all of us. Charlotte gave us so many gifts. We go in this time with much less sadness, much more hope, and the wisdom, experience and joy that Charlotte gave us.
Despite this very grim prognosis and the many opinions we received that termination would be best for all involved, we chose to carry to term with the hope we would get a few moments with our first child. During the weeks that followed we constantly reminded one another that we had chosen to place our baby and ourselves in God's hands.
When she was born--much larger than expected at 6 lbs 5 oz and beautiful beyond description--we were thrilled when she cried and breathed with very minimal intervention. She stayed in the room with us after her birth and was passed from family member to family member for hours. When it became clear she wasn't going anywhere, the nurses came in and we gave her a bath right in the room.
Three days later we brought her home with the warning she would likely be with us only days.
Charlotte was a sleepy baby and had to be woken up in the night to eat. She ate well from a bottle but unfortunately did best on Nutrimagen, an expensive and smelly formula. We were thrilled when we were able to switch her to soy. She was very prone to terrible diaper rash and grew slowly, but we were happy for each day we had with her.
As the days turned into weeks, we started with the specialists. She began seeing Early Intervention at 3 months for physical therapy and also saw Cardiology, Orthopedics and Genetics in addition to frequent trips to her Pediatrician. After spiking a very high fever and being admitted to Primary Children's Medical Center for the first time in October 2005 we found out she had kidney reflux and was on antibiotics her entire life to prevent infection. Soon after she had an incident of respiratory arrest while at Grandma's and after being worked up for days in the hospital, she came home on 24 hour oxygen for apnea and pulmonary hypertension.
Charlotte was growing. She smiled and giggled but didn't make eye contact or reach for toys. She had been born with trigoncephaly, which meant her forehead had fused into a point. We had been told by the Neonatologist that this was because she had no frontal lobe to make her skull form correctly, which, he pointed out, was the center of personality. Charlotte's Orthopedist who casted her crooked foot asked us what we were doing about her head, which we said wethought was just a cosmetic issue. He sent us right across the hall to a surgeon who suggested an intense 8 hour surgery. He explained that her brain (which we thought was nearly non-existent) was unable to grow with her skull sutures fused and it would be in her best interest to have the sutures opened to allow for optimal growth and to reduce the risk of seizures and other problems. I was so happy to have a doctor looking out for Charlotte and her future, and we decided to go ahead with the surgery.
When Charlotte was 8 months old we shaved off her beautiful dark hair and she underwent a bilateral orbital advancement. It was a long surgery and was scary, but she did well and went home a few days later. A week after returning home from the hospital, on a Sunday morning, Charlotte reached for a toy for the first time, and days later lifted a baby cookie to her mouth and sucked on it. It was incredible to see her progress after the surgery. She immediately began making eye contact and smiled much more often. She was a different baby girl.
Charlotte did well for the next year, but her growth dropped off quite a bit. Doctors started suggesting a feeding tube which we fought. We were afraid she would lose her ability to eat and she loved to eat. Finally after an episode of reflux and pneumonia we decided to go for the g-tube and Nissen procedure. It took months for her to be healthy enough to place it. We will always wish we had done it earlier. After a difficult surgery and hospital stay we began using her g-tube to feed continuously at night. She continued to get her favorite foods during the day as well. Charlotte again grew by leaps and bounds. Her hair grew like crazy and she had energy to roll and play and laugh. Looking back on pictures of her before we placed the g-tube we are broken hearted. She looks so thin and sick! She was just not able to eat enough to meet her needs. We were also much more likely to get her full medication doses through her g-tube and were able to keep her hydrated when she got sick and refused to eat. There are times I still wish all kids had g-tubes.
Life with Charlotte fell into a predictable pattern over the next months. There were fevers and middle of the night rushes to the Emergency Room. There were many therapy appointments, minor surgeries, the occasional respiratory emergency and big scare, and so many triumphs. Charlotte was happy. She had a great sense of humor and a strong personality. She loved spending time with her family and big dogs. She had her favorite toys and her definite dislikes. However her health was always fragile. I hated going to cardiology appointments as I knew her pulmonary hypertension was slowly worsening and there wasn't much anyone could do about it. I hated having to turn up her oxygen during colds and seeing her struggle. I hated taking her for haircuts, because for some reason despite all the other awful things she had to endure, she really could not stand having her hair cut.
Life with Charlotte fell into a predictable pattern over the next months. There were fevers and middle of the night rushes to the Emergency Room. There were many therapy appointments, minor surgeries, the occasional respiratory emergency and big scare, and so many triumphs. Charlotte was happy. She had a great sense of humor and a strong personality. She loved spending time with her family and big dogs. She had her favorite toys and her definite dislikes. However her health was always fragile. I hated going to cardiology appointments as I knew her pulmonary hypertension was slowly worsening and there wasn't much anyone could do about it. I hated having to turn up her oxygen during colds and seeing her struggle. I hated taking her for haircuts, because for some reason despite all the other awful things she had to endure, she really could not stand having her hair cut.
Charlotte got a little red wheelchair for her 3rd birthday and started preschool later that year in 2008. She had learned to sit up on her own and was clearly quite proud of herself. She was learning to wear her hearing aides and seemed to be understanding a few signs. She was affectionate and happy. She also had a new baby sister Ella, who was born healthy in October 2008. It was frustrating but kind of fun to watch Charlotte go through the usual jealousy that comes with a new baby. She would glare and refuse to look at Ella, throw fits when I fed her and try to bite Ella if she was able to get close enough. Within a couple of weeks she got used to having her around, but we still had to watch out for the biting.
That winter we found out Charlotte had aged out of the recommended period for Synagis, a monthly shot that helps prevent RSV. She had a hard winter, and was often sick and missed a lot of school. It was heartbreaking to see her losing some of her skills she had picked up over the last few healthy months but we held on to the hope that spring would come early.
In February 2009 Charlotte spiked another fever and her oxygen need went up. We went to the ER after much prayer and she was diagnosed that night with RSV. I was actually relieved that it wasn't heart failure. Over the next few days Charlotte did not improve and soon had pneumonia as well and was in the ICU. On Saturday February 21 we called our families together and everyone came to say goodbye to Charlotte. It was like an echo of her birth day--the family all together in a hospital room passing around a now-much-bigger baby and giving her kisses and crying over her. She passed away very peacefully surrounded by those she loved and who loved her.
Over the next few weeks I felt Charlotte so close and I was surprised at how full of light I felt. It was a special time. However after awhile the grief set in and we worked through it as a family and on our own. How grateful we were to have our little Ella with us and the support and love of our families. Grieving is a long and possibly endless process but knowing Charlotte will always be a part of our family helps us cope with the loss of our darling girl. We miss her terribly but talk about her often and her little sister recognizes pictures of her, even though she was only four months old when Charlotte passed away.
We also began to consider how and if we could continue to grow our family. Ella had been a happy surprise but doctors estimated our risk for having another child with an unbalanced translocation between 12 and 25%.
Our fears were confirmed and I am expecting our 4th daughter on October 20 2010. She has the same chromosomal abnormality as Charlotte. She also appears much healthier than Charlotte did on ultrasound, does not have trigoncephaly or any heart issues at this point, and her name is Lily. Although we know anything could happen, we know there is a good chance Lily will be with us for more than a few days.
Sep 28, 2010
To You, My Sisters
I love this. This topic has especially been on my mind while enlisting the help of the new kidz krew. I know you will love it, so enjoy!....
~~~
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children ungergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. Weknow "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.
Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.
We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
By Maureen K. Higgins
~~~
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children ungergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. Weknow "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.
Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.
We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
By Maureen K. Higgins
Sep 27, 2010
Meet the New Krew
Proudly presenting the new "kidz krew!"
We'll make quick introductions today, then you will be hearing more from all of them in future posts to come! You can also find their pictures linked to their blogs on the right sidebar....
I am 23 and have been married to my husband for almost 4 years. We are Mormon, and I have only been a convert for almost 4 years. I have my AA, and was 13 classes away from my BA in Liberal Studies as well as 3 classes away from a minor in Deaf Studies when I gave birth to Grace and found out there were issues. My plan had been to go to State college and get my credentials to be an elementary teacher, but those plans were put on hold. I don’t mind though, I would leave anything in a heartbeat for my little one. My husband has 5 other children from his previous marriage, and that ended because his wife was struck in a car accident head on by a drunk driver and she died instantly. When I’m not researching about Grace, or working with her, I am learning about how to be self sufficient in case of an emergency, and love taking care of my family! Well, I don’t know what else you want to know, so if there’s something I didn’t add, go ahead and ask me!
I am the mother to 4 wiggly and wonderful boys. This means I am an expert worm digger, stain get-er out-er and tickler. We call our third son, Caleb, our "Wink from Heaven." Caleb has hydrocephalus, and his brain largely did not form. Doctors didn't expect him to live for more than a few weeks. Caleb is now 4 1/2 years old! He has a joyful spirit and is a little miracle in our family. Among his various physical challenges, Caleb is missing one of his eyes. Even though he will never be able to say "I love you" with words, he tells us every day with his "wink!" His little wink is a daily message of love from heaven. Although most hours in my day are spent taking care of my boys and their needs, I also love going to the library, putting on my fuzzy socks and curling up with my latest find in juvenile literature. I love Gerber daisies, chap stick and warm chocolate chip cookies. I enjoy music, being outside, having adventures (even if they are only in my imagination), laughing, and spending time with my family. My idea of the perfect day is being surrounded by the people I love. I get excited for BYU sports, and I get fluttery when I hear my husband come home from work. My favorite word is joy. My favorite smell is sunshine, and I believe in miracles.
I'm wife to Brandon and mother to Matthew and Autumn. Matthew and Autumn are gifts of adoption. Matthew had a tragic beginning to his life before he came to our home band needed lots of love, which we gladly gave him and continue to give him! He is currently 17-months-old, has a severe seizure disorder and is developmentally an infant. But labels have never been our "thing." We choose to see him for the beautiful, sweet, kind hearted boy who enjoys laughing while his sister cries. He will hold your hand and in doing so grab hold of your heart. Autumn was born addicted to drugs and had failure to thrive. She was a measly 3 lbs 4 oz at birth. She had suffered a stroke to her spine in utero that has left her paraplegic. She spent 6 months in NICU before joining our family. Autumn is cognitively intact and is blossoming. We never intended to adopt special needs children. All we knew was we were meant to be a mommy and a daddy. We now know that our children have taught us more than we ever knew possible.
I am grandmother to "Beautiful Hailey." Hailey is 3 years old and has Athetoid Cerebral Palsy. I started a blog as a way to keep my family informed about Hailey's progress. It has indirectly been a therapy for me to put my thoughts down. I had no idea how many friendships I would gain by writing on my blog. I have met so many other families through blogging who have family members with disabilities. It is a very special club!
Jenny ~ Samantha's mom
Blog: Lil' Samsquatch
Kristina ~ Emma's mom
Blog: How Life Happens
(Read Emma's story here)
(Read Brody's story here)
I am the wife of an amazing, hard-working man, and a mother to 4 wonderful children. I have a son who has a terminal heart condition called Left Ventricular Non Compaction, a form of Pediatric Cardiomyopathy. I never thought I would have a son with special needs. He is currently undergoing testing for developmental delays. Each day is a adventure. Some easy, some not so easy. But we look for the positives, and try to be involved in positive uplifting things such as Kidzorg, in order to focus on the positives. He has taught me so much, and I am indeed grateful to have him as my son.
Tara ~ Chloe's mom
Blog: TMI
(Read Chloe's story here)
We'll make quick introductions today, then you will be hearing more from all of them in future posts to come! You can also find their pictures linked to their blogs on the right sidebar....
I am the mother to 4 wiggly and wonderful boys. This means I am an expert worm digger, stain get-er out-er and tickler. We call our third son, Caleb, our "Wink from Heaven." Caleb has hydrocephalus, and his brain largely did not form. Doctors didn't expect him to live for more than a few weeks. Caleb is now 4 1/2 years old! He has a joyful spirit and is a little miracle in our family. Among his various physical challenges, Caleb is missing one of his eyes. Even though he will never be able to say "I love you" with words, he tells us every day with his "wink!" His little wink is a daily message of love from heaven. Although most hours in my day are spent taking care of my boys and their needs, I also love going to the library, putting on my fuzzy socks and curling up with my latest find in juvenile literature. I love Gerber daisies, chap stick and warm chocolate chip cookies. I enjoy music, being outside, having adventures (even if they are only in my imagination), laughing, and spending time with my family. My idea of the perfect day is being surrounded by the people I love. I get excited for BYU sports, and I get fluttery when I hear my husband come home from work. My favorite word is joy. My favorite smell is sunshine, and I believe in miracles.
I'm wife to Brandon and mother to Matthew and Autumn. Matthew and Autumn are gifts of adoption. Matthew had a tragic beginning to his life before he came to our home band needed lots of love, which we gladly gave him and continue to give him! He is currently 17-months-old, has a severe seizure disorder and is developmentally an infant. But labels have never been our "thing." We choose to see him for the beautiful, sweet, kind hearted boy who enjoys laughing while his sister cries. He will hold your hand and in doing so grab hold of your heart. Autumn was born addicted to drugs and had failure to thrive. She was a measly 3 lbs 4 oz at birth. She had suffered a stroke to her spine in utero that has left her paraplegic. She spent 6 months in NICU before joining our family. Autumn is cognitively intact and is blossoming. We never intended to adopt special needs children. All we knew was we were meant to be a mommy and a daddy. We now know that our children have taught us more than we ever knew possible.
I am a wife, mom and registered nurse with four daughters. Charlotte was born with a rare chromosomal abnormality and many health and developmental problems, but lived with joy and purpose for 3 years and 8 months. She passed away in 2009 when her sister, Ella, was four months old. Ava joined the family through adoption in May 2010. Ava and Ella are healthy and typically developing. We will also be welcoming Lily in October 2010 who has the same chromosomal abnormalities as Charlotte. We look forward to raising Lily and using all we learned from Charlotte to help Lily reach her fullest potential.
Jenny ~ Samantha's mom Blog: Lil' Samsquatch
During my short 30 years, I feel like I've been blessed with a lot of opportunities and experiences that have added to my life. I've traveled, taught high school, learned languages, played sports....but nothing adds more joy than being a wife and mother. I taught high school for a couple years, and I loved that! Loved that! But my joy is with my family. It tops my list of -- hands down. Both Samantha and Callie have been such a blessing in my life, I can't even begin to start in a short little intro. And to have Marcus as my wingman, well, it doesn't get much better. We entered the world of special needs when Samantha was born in June 2006. Half way through my pregnancy, her head circumference measured small. When she was 3 months old, she was diagnosed with Primary Autosommal Recessive Microcephaly. This type of microcephaly, we were told by our geneticist, is very rare, so no one can really tell us what to expect. We take the seizures and developmental delays one day at a time, (and I do take the time to write about it all on our blogs). Sure things aren't always easy, but I'm not sure how much sweeter life could be. So yeah, being a wife and mommy...I think I'll keep my day job.
Kristina ~ Emma's momBlog: How Life Happens
(Read Emma's story here)
Kristina is the mother of two charming daughters, Julia (4) and Emma (3), and wife to a wonderful man who puts up will all her wild ideas. A former marketing executive, she finds her days at home to be full of life and laughter even though they are busier than she ever imagined. Kristina started blogging to chronicle her family's journey that includes raising a child that has a profound hearing loss and cerebral palsy due to a congenital cytomegalovirus (CMV) exposure. Since learning of the CMV diagnosis she has worked to raise awareness on preventing CMV exposure during pregnancy. Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.
Melissa ~ Brody's mom
Blog: Life on the Mini Farm
Melissa ~ Brody's mom(Read Brody's story here)
Tara ~ Chloe's momBlog: TMI
(Read Chloe's story here)
I am a wife and a mother. That pretty much sums it up. You're probably sick of hearing about me. I may be the creator of the kidz blog, but play only a small role. It is all the incredible readers and kidz krew members who give the blog life! I rarely go a day when someone doesn't share a quote or a story or a song that might be good to post on kidz. I am forever grateful for the friendships I have made through this network of incredible people who seek and give support. Thank you, thank you - to the new "Krew," and to all of you! We're all in this together!
Sep 26, 2010
When Facing a Storm
'Stop telling God how big your storm is.
Instead, tell the storm
how big your God is!'
Instead, tell the storm
how big your God is!'
~Unknown
Sep 24, 2010
Celebrating Your Child
"Motherhood is about raising-and celebrating-the child you have, not the child you thought you would have.
It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."
~The Water Giver
Canine Assistants
Post retrieved from Love of Paws.
I watched a show on GPB, “Through a Dogs Eyes“, all about Canine Assistants, a wonderful non-profit organization who trains and provides dogs for children and adults with physical disabilities or other special needs.
A Service Dog assist children and adults with physical disabilities or other special needs in many ways. They perform a variety of tasks like turning on lights, retrieving dropped objects, opening and closing doors as well as providing secure companionship. This was such a sweet and simple answer to a question asked of a recipient… “What do you like most about your dog?” “My dog makes my wheelchair disappear“.
Find out how to apply for a Canine Assistants Dog here.
I watched a show on GPB, “Through a Dogs Eyes“, all about Canine Assistants, a wonderful non-profit organization who trains and provides dogs for children and adults with physical disabilities or other special needs.
In addition to physically assisting those with disabilities, Canine Assistants Service Dogs are instrumental in removing many of the barriers faced by the disabled in today’s society. I was extremely moved when I read the story of the founder Jennifer Arnold. Make sure to check out Jennifer’s book Through A Dogs Eyes on my Amazon Wish List!
Canine Assistants trains Service Dogs, Companion Dogs and Seizure Response Dogs.
Canine Assistants trains Service Dogs, Companion Dogs and Seizure Response Dogs.
A Service Dog assist children and adults with physical disabilities or other special needs in many ways. They perform a variety of tasks like turning on lights, retrieving dropped objects, opening and closing doors as well as providing secure companionship. This was such a sweet and simple answer to a question asked of a recipient… “What do you like most about your dog?” “My dog makes my wheelchair disappear“.
A Companion Dog is much like the Service dog, but primarily works in a recipient’s home, assisting with tasks around the house and more importantly, contributing to the emotional well being of their person.
A Seizure Response Dog is first trained much like the Service or Companion dogs to ensure their general health, personality and temperament is sufficient. Then they go through response training to provide one of the following behaviors, depending on the need: remain next to the person during the course of the seizure, summon help or retrieve a phone prior to the seizure as instructed by their person. Some even develop the ability to predict and react in advance to an oncoming seizure.
Remember that these types of dogs are working animals, not really pets. The health and safety of their owner may depend on the dog’s ability to focus and resist distraction. It is important not to speak to one of these dogs without first getting permission. Even if the dog doesn’t appear to be working, it probably is. Always ask first.
Check out Canine Assistants today and learn more about the wonderful people who volunteer locally and nationally, the gracious supporters, their educational programs, and their never ending need for donations to continue helping as many people as possible.
Remember that these types of dogs are working animals, not really pets. The health and safety of their owner may depend on the dog’s ability to focus and resist distraction. It is important not to speak to one of these dogs without first getting permission. Even if the dog doesn’t appear to be working, it probably is. Always ask first.
Check out Canine Assistants today and learn more about the wonderful people who volunteer locally and nationally, the gracious supporters, their educational programs, and their never ending need for donations to continue helping as many people as possible.
Find out how to apply for a Canine Assistants Dog here.
Sep 23, 2010
Sep 22, 2010
This is Our Life
by Amanda of Grace's Journey.
After 2 years of trying to get pregnant, we had just started menstrual cycle medication to regulate my cycle, as I have a sometimes 2 month break, sometimes 5 month break between cycles. The medication didn’t work, and I was worried, but then I received a call saying it didn’t work because I was already pregnant! The pregnancy went great! I was slightly nauseous some of the time, but other than that, I was thoroughly enjoying my pregnancy. All the checkups seemed to be going ok, but I was always worried about how small I was. I mean, at 2 weeks before pregnancy, people at my work still didn’t know I was pregnant!! There had always been fears throughout my pregnancy because there seemed to be a lack of fluid, and at times, there were periods of time where she wouldn’t move for 10 hours. I would always go in and get checked, and everything would be “fine”. All the ultrasounds came out normal, everything looked just great. About 1 day before delivery day, little Grace hadn’t moved in more than 10 hours, so we once again made the trip to the hospital. This time, I stayed…and they induced. They were really worried because out of 4 cavities that they regularly check for fluid, 1 had enough fluid to calculate from. So I was induced (slowly) and after 5 hours of being 1 cm dilated, they broke my water. They also had to attach a moniter to Grace’s head because they kept losing her heartbeat through my stomach, so they wanted to get it right from her head. I was on Pitocin for quite a while, and was wanting to go all natural, but the pain was just too much for me! They gave me an epidural about 7 hours into the contractions, and I was still just 2 cm. After that, the pain pretty much went away except for a sciatic nerve pain down my right leg that I would feel with every contraction. As the hours went on, I kept wondering when everything would just happen! When would I see my baby? So we had gone into the hospital at about 12 am, they didn’t induce until about 3 pm, and at around 12 am the next morning, I kept telling my husband I felt a major pressure “down there”. We kept telling the nurses, but there responses were all the same “there’s no way you can be ready to deliver. You were only at 2 cm. It’s just the contractions.” And then they would leave. Hm…that’s weird. You would think a mother would know her own body signals. So for the next hour and a half, I kept telling him I felt a major pressure “down there” like I need to push it out. He said he would wait until the nurse came in and tell her, and in the meantime, I asked him to reposition my pillow that was between my legs. He did, and what he found was pretty crazy. I was leaking fluid, and had been for quite a while, and when he told the nurse, she came in and checked me, and couldn’t get her fingers in to check for the head too deep, because there she was! That entire time, she had been in the birth canal! They screamed out to the hall for help, and within seconds the room was full of people, and they were telling me “DON’T PUSH!” I couldn’t help it though! As everyone got situated, and extra pair of people came in, and the doctor said to them, “What are you guys doing here? I didn’t ask for you guys to come.” And they responded, “we are just observing.” Ok, well I guess that was fine with the doctor, and at this point, we could bring in the whole hospital, as long as I got to push her out! At 2:09 am, Grace was born, but it wasn’t the “aw, she’s born, everyone’s happy” that you would think. She was thrown onto my belly, blue as can be, Daddy was told to “hurry up and cut the cord” and she was taken over to the warmer. For 12 minutes, I cried, shaking, while they worked with her. She wasn’t breathing much. She didn’t cry. Oh what I would give to have her cry. The doctor said something about the placenta being detached…that the umbilical cord was too small to have given the baby enough nutrients throughout the pregnancy. That I was starving her while I was carrying her… Gosh those 12 minutes went by so slow. They wouldn’t let my husband take any pictures of Grace…finally, she cried a quiet cry, and her color was back to normal. Her nose had been pushed to the side from being in the birth canal for so long, and it was swollen and she couldn’t breath through it. Poor little thing having to already learn a different way to breath properly. She was taken to the nursery to be observed for a long time. We had to stay longer in the hospital than normal because of the breathing problem with her nose, and they said Grace acts like a starved baby, trying to grab onto anything with her mouth. And to think that the only problem I thought we would have was her breathing issue with the nose…and that problem would right itself with time, never to be an issue again…
At three months old, I had noticed a mark above her butt crack that worried me. It was an indentation and a red dot above it. I was worried, of course, so I went to the doctor and asked him. He said, “Hm…I want a neurosurgeon to look at this.” Oh Great. That must mean bad news… So off we went to Oakland to see what’s going on. Right when the doctor looked at it up there she said, “This could very well be a tethered cord. She needs to have an MRI, and most likely surgery.” WHAT??? I thought babies were supposed to come out perfect? What are you telling me? We had to wait till she was 6 months to have the MRI of her spine, and we found the results to be less than appealing. She did in fact have a tethered cord, and will need surgery. I cried. So much. To have the guilt on my heart that I probably caused this because of those pills I took…If I only would have taken a pregnancy test BEFORE taking those pills like the doctor had told me!! But not only were we worried about this surgery…she was also very little, and wasn’t gaining weight enough. And her head was SO SMALL?! What’s going on? Isn’t their head supposed to grow with their body? Isn’t it supposed to look bigger than the body for a while? Why isn’t hers? But that was pushed to the side. Surgery came April 1st, and we were there for little Grace’s first Easter. My poor baby…after the surgery, and 25 stitches later, she was sleeping in her bed, sedated so she could rest. Puffy from the anesthesia, and swollen from the surgery, my little marshmallow lay peacefully resting. The surgery went well, and the spine was in fact extremely tethered, and it was a good idea to do the surgery. Now, we wait. And hope and pray it doesn’t re-tether. We spent 6 days in the hospital, and I finally got upset enough and barked at a nurse because I just wanted to go HOME. They wouldn’t let us go because Grace hadn’t had a bowel movement, and because she was having to be catheterized. Well, we had already been taught for 2 days how to catheterize her, and I did it just as well, if not better, than all those other nurses. Grace was back down to her normal size, and the stitches were very clean and healthy. So I want to go HOME. The nurse I barked at got the neurosurgeon, who then said, “why are they still here? They need to be signed out, because I know they will take great care of her.” Oh, yeah, a doc on MY side! So we took our little one home and just spoiled her with love. So that was one hurdle we got over. But the worry never ceases…that head is still so small on my little girl… which we found out later was because she has Microcephaly. Gosh…another thing my little girl has to deal with. I’m so sorry Grace. I’m so sorry I took those pills…was that the reason you are like this? I don’t know. But the Microcephaly was the least of our problems. Because I knew she had this, I investigated, as I always do. I read that there could be brain problems, and I was worried. Grace already had esotropia, amblyopia, and possibly anisocoria, and gosh these hurdles just never stop coming to us. I asked her pediatrician to order an MRI of her brain, but he denied it. So I forced the issue, because I’m the mother and I know what’s best. Finally, he caved, and ordered the MRI. So down to Roseville this time! WOW! They have somewhere closer for us to go. What a relief. And oh…hm…obviously mommy does know best. Now we know Grace has partial Agenesis of the Corpus Collosum and Hypoplasia of the Cerebellum. Gosh, what more could this little child of mine have to deal with? At this point I’m so mad. I don’t understand why my child has to deal with this. The days go on, and the months go on. We try to wrap our heads around what’s going on, but it’s just difficult. Grace is as bright as can be, and so happy and loving all the time. She doesn’t even look like a child that would have issues! But I still didn’t feel right about this. I still felt like there was something wrong, something lingering. And I wasn’t the only one. I do recall the neurosurgeon saying, “There’s something else Amanda. There’s something underlying that we haven’t found, that is the cause of all this. What we don’t know is what it is, and how bad it is, or if it’s worse than everything we know already.” Wow. That’s wonderful to hear a doctor say. Gosh, that makes me feel so secure.
When Grace was around 8 months old, I realized we could get genetic testing done (I found out online) and so of course I jumped at that idea. It was a blood test…hm that’s not too difficult. So we got that ordered and taken care of. Wow, we have to wait 6-8 weeks? Well, if we do that, we will be in Montana on a family vacation?! How will I be able to have fun knowing something could be found? But I went, and we had fun, and it was a wonderful trip. But of course, I just had to check my email on the day before we were leaving. I should have just waited, so the whole trip would have been fun. They found something. It’s called 7Q36 gene deletion. It’s super rare, and there’s no cure. A part of her gene is deleted, which has caused everything else that’s been going on. Great…I’m glad we found the issue, but wow, what a fun killer.
Grace is now 1 year old. She’s in therapy through Alta Regional, Sacramento County Office of Education, and Easter Seals. She receives physical therapy every other week, Infant Education once a week, and will start receiving Warm Water Therapy once a week. She is developmentally delayed to a 7 month age, but is such a fighter, and won’t give in. She is only inchworm crawling. She doesn’t crawl on hands and knees, she can’t stand on her own, doesn’t step forward when we stand her up, and just recently learned how to sit up straight without tripoding. She has maintained a weight of 17 pounds for three months, and her pediatrician has begun to worry, so she is on whole milk daily, Carnation instant breakfast as much as she will drink, and butter with every meal. She is mainly on formula, with baby food as much as she will eat, and some adult food. She hasn’t gotten the concept good enough about chewing and swallowing. She is still in the “play with food rather than feed myself the food” phase, so we are slowly incorporating adult food into her meals. She knows how to mimic really well, and can say “dada” and “mama” but not because she knows who we are, as well as “baba”, “out” and “nana”. She recently learned how to wave, and will put her hand to her mouth for “blow kisses”. She also just recently learned how to clap.
I don’t know what the future hold for Grace. I don’t know if she will ever walk, as we found out that she only has half her sacrum. We found that out the same time we found out about the tethered cord. Hm. All this news is overwhelming. I don’t know if she will ever crawl normally. I don’t know if she will ever talk, read, go to school, or even comprehend everything around her. I fear that she will struggle through her life each and every day. This is a new experience for me, as well as for my husband. We still cry about it at times, we still get angry about it too. I still blame God, but I know He’s here with us, helping us. I still blame myself. A lot. I guess that’s just what mothers do though…we have to blame someone, so why wouldn’t it be us, since we carried them. In a week, Grace will have another MRI, and if there is more fluid in her spine, she will have to have another surgery. After the first surgery, they found there was fluid still in the spine…oh I hope there won’t be another surgery. But this is our life. And whatever comes our way, we will be strong for Grace, and for each other.
After 2 years of trying to get pregnant, we had just started menstrual cycle medication to regulate my cycle, as I have a sometimes 2 month break, sometimes 5 month break between cycles. The medication didn’t work, and I was worried, but then I received a call saying it didn’t work because I was already pregnant! The pregnancy went great! I was slightly nauseous some of the time, but other than that, I was thoroughly enjoying my pregnancy. All the checkups seemed to be going ok, but I was always worried about how small I was. I mean, at 2 weeks before pregnancy, people at my work still didn’t know I was pregnant!! There had always been fears throughout my pregnancy because there seemed to be a lack of fluid, and at times, there were periods of time where she wouldn’t move for 10 hours. I would always go in and get checked, and everything would be “fine”. All the ultrasounds came out normal, everything looked just great. About 1 day before delivery day, little Grace hadn’t moved in more than 10 hours, so we once again made the trip to the hospital. This time, I stayed…and they induced. They were really worried because out of 4 cavities that they regularly check for fluid, 1 had enough fluid to calculate from. So I was induced (slowly) and after 5 hours of being 1 cm dilated, they broke my water. They also had to attach a moniter to Grace’s head because they kept losing her heartbeat through my stomach, so they wanted to get it right from her head. I was on Pitocin for quite a while, and was wanting to go all natural, but the pain was just too much for me! They gave me an epidural about 7 hours into the contractions, and I was still just 2 cm. After that, the pain pretty much went away except for a sciatic nerve pain down my right leg that I would feel with every contraction. As the hours went on, I kept wondering when everything would just happen! When would I see my baby? So we had gone into the hospital at about 12 am, they didn’t induce until about 3 pm, and at around 12 am the next morning, I kept telling my husband I felt a major pressure “down there”. We kept telling the nurses, but there responses were all the same “there’s no way you can be ready to deliver. You were only at 2 cm. It’s just the contractions.” And then they would leave. Hm…that’s weird. You would think a mother would know her own body signals. So for the next hour and a half, I kept telling him I felt a major pressure “down there” like I need to push it out. He said he would wait until the nurse came in and tell her, and in the meantime, I asked him to reposition my pillow that was between my legs. He did, and what he found was pretty crazy. I was leaking fluid, and had been for quite a while, and when he told the nurse, she came in and checked me, and couldn’t get her fingers in to check for the head too deep, because there she was! That entire time, she had been in the birth canal! They screamed out to the hall for help, and within seconds the room was full of people, and they were telling me “DON’T PUSH!” I couldn’t help it though! As everyone got situated, and extra pair of people came in, and the doctor said to them, “What are you guys doing here? I didn’t ask for you guys to come.” And they responded, “we are just observing.” Ok, well I guess that was fine with the doctor, and at this point, we could bring in the whole hospital, as long as I got to push her out! At 2:09 am, Grace was born, but it wasn’t the “aw, she’s born, everyone’s happy” that you would think. She was thrown onto my belly, blue as can be, Daddy was told to “hurry up and cut the cord” and she was taken over to the warmer. For 12 minutes, I cried, shaking, while they worked with her. She wasn’t breathing much. She didn’t cry. Oh what I would give to have her cry. The doctor said something about the placenta being detached…that the umbilical cord was too small to have given the baby enough nutrients throughout the pregnancy. That I was starving her while I was carrying her… Gosh those 12 minutes went by so slow. They wouldn’t let my husband take any pictures of Grace…finally, she cried a quiet cry, and her color was back to normal. Her nose had been pushed to the side from being in the birth canal for so long, and it was swollen and she couldn’t breath through it. Poor little thing having to already learn a different way to breath properly. She was taken to the nursery to be observed for a long time. We had to stay longer in the hospital than normal because of the breathing problem with her nose, and they said Grace acts like a starved baby, trying to grab onto anything with her mouth. And to think that the only problem I thought we would have was her breathing issue with the nose…and that problem would right itself with time, never to be an issue again…
At three months old, I had noticed a mark above her butt crack that worried me. It was an indentation and a red dot above it. I was worried, of course, so I went to the doctor and asked him. He said, “Hm…I want a neurosurgeon to look at this.” Oh Great. That must mean bad news… So off we went to Oakland to see what’s going on. Right when the doctor looked at it up there she said, “This could very well be a tethered cord. She needs to have an MRI, and most likely surgery.” WHAT??? I thought babies were supposed to come out perfect? What are you telling me? We had to wait till she was 6 months to have the MRI of her spine, and we found the results to be less than appealing. She did in fact have a tethered cord, and will need surgery. I cried. So much. To have the guilt on my heart that I probably caused this because of those pills I took…If I only would have taken a pregnancy test BEFORE taking those pills like the doctor had told me!! But not only were we worried about this surgery…she was also very little, and wasn’t gaining weight enough. And her head was SO SMALL?! What’s going on? Isn’t their head supposed to grow with their body? Isn’t it supposed to look bigger than the body for a while? Why isn’t hers? But that was pushed to the side. Surgery came April 1st, and we were there for little Grace’s first Easter. My poor baby…after the surgery, and 25 stitches later, she was sleeping in her bed, sedated so she could rest. Puffy from the anesthesia, and swollen from the surgery, my little marshmallow lay peacefully resting. The surgery went well, and the spine was in fact extremely tethered, and it was a good idea to do the surgery. Now, we wait. And hope and pray it doesn’t re-tether. We spent 6 days in the hospital, and I finally got upset enough and barked at a nurse because I just wanted to go HOME. They wouldn’t let us go because Grace hadn’t had a bowel movement, and because she was having to be catheterized. Well, we had already been taught for 2 days how to catheterize her, and I did it just as well, if not better, than all those other nurses. Grace was back down to her normal size, and the stitches were very clean and healthy. So I want to go HOME. The nurse I barked at got the neurosurgeon, who then said, “why are they still here? They need to be signed out, because I know they will take great care of her.” Oh, yeah, a doc on MY side! So we took our little one home and just spoiled her with love. So that was one hurdle we got over. But the worry never ceases…that head is still so small on my little girl… which we found out later was because she has Microcephaly. Gosh…another thing my little girl has to deal with. I’m so sorry Grace. I’m so sorry I took those pills…was that the reason you are like this? I don’t know. But the Microcephaly was the least of our problems. Because I knew she had this, I investigated, as I always do. I read that there could be brain problems, and I was worried. Grace already had esotropia, amblyopia, and possibly anisocoria, and gosh these hurdles just never stop coming to us. I asked her pediatrician to order an MRI of her brain, but he denied it. So I forced the issue, because I’m the mother and I know what’s best. Finally, he caved, and ordered the MRI. So down to Roseville this time! WOW! They have somewhere closer for us to go. What a relief. And oh…hm…obviously mommy does know best. Now we know Grace has partial Agenesis of the Corpus Collosum and Hypoplasia of the Cerebellum. Gosh, what more could this little child of mine have to deal with? At this point I’m so mad. I don’t understand why my child has to deal with this. The days go on, and the months go on. We try to wrap our heads around what’s going on, but it’s just difficult. Grace is as bright as can be, and so happy and loving all the time. She doesn’t even look like a child that would have issues! But I still didn’t feel right about this. I still felt like there was something wrong, something lingering. And I wasn’t the only one. I do recall the neurosurgeon saying, “There’s something else Amanda. There’s something underlying that we haven’t found, that is the cause of all this. What we don’t know is what it is, and how bad it is, or if it’s worse than everything we know already.” Wow. That’s wonderful to hear a doctor say. Gosh, that makes me feel so secure.
When Grace was around 8 months old, I realized we could get genetic testing done (I found out online) and so of course I jumped at that idea. It was a blood test…hm that’s not too difficult. So we got that ordered and taken care of. Wow, we have to wait 6-8 weeks? Well, if we do that, we will be in Montana on a family vacation?! How will I be able to have fun knowing something could be found? But I went, and we had fun, and it was a wonderful trip. But of course, I just had to check my email on the day before we were leaving. I should have just waited, so the whole trip would have been fun. They found something. It’s called 7Q36 gene deletion. It’s super rare, and there’s no cure. A part of her gene is deleted, which has caused everything else that’s been going on. Great…I’m glad we found the issue, but wow, what a fun killer.
Grace is now 1 year old. She’s in therapy through Alta Regional, Sacramento County Office of Education, and Easter Seals. She receives physical therapy every other week, Infant Education once a week, and will start receiving Warm Water Therapy once a week. She is developmentally delayed to a 7 month age, but is such a fighter, and won’t give in. She is only inchworm crawling. She doesn’t crawl on hands and knees, she can’t stand on her own, doesn’t step forward when we stand her up, and just recently learned how to sit up straight without tripoding. She has maintained a weight of 17 pounds for three months, and her pediatrician has begun to worry, so she is on whole milk daily, Carnation instant breakfast as much as she will drink, and butter with every meal. She is mainly on formula, with baby food as much as she will eat, and some adult food. She hasn’t gotten the concept good enough about chewing and swallowing. She is still in the “play with food rather than feed myself the food” phase, so we are slowly incorporating adult food into her meals. She knows how to mimic really well, and can say “dada” and “mama” but not because she knows who we are, as well as “baba”, “out” and “nana”. She recently learned how to wave, and will put her hand to her mouth for “blow kisses”. She also just recently learned how to clap.
I don’t know what the future hold for Grace. I don’t know if she will ever walk, as we found out that she only has half her sacrum. We found that out the same time we found out about the tethered cord. Hm. All this news is overwhelming. I don’t know if she will ever crawl normally. I don’t know if she will ever talk, read, go to school, or even comprehend everything around her. I fear that she will struggle through her life each and every day. This is a new experience for me, as well as for my husband. We still cry about it at times, we still get angry about it too. I still blame God, but I know He’s here with us, helping us. I still blame myself. A lot. I guess that’s just what mothers do though…we have to blame someone, so why wouldn’t it be us, since we carried them. In a week, Grace will have another MRI, and if there is more fluid in her spine, she will have to have another surgery. After the first surgery, they found there was fluid still in the spine…oh I hope there won’t be another surgery. But this is our life. And whatever comes our way, we will be strong for Grace, and for each other.
Sep 21, 2010
Sep 20, 2010
Fighting Spirit
lyrics by Helen Austin
You've not been around too long
You're still going, going strong
Gonna make everyday count
Gonna store this away yeh yeh
I see it in your eyes
Those windows tell no lies
I see the hope, see the future
I see it everyday I love your
Fighting spirit, fighting spirit, fighting spirit
And I'm gonna fight for you everyday
So much to do so don't be late
Settle down, hurry up and wait
You light up when I see you, you light up every room
When the curtain's drawn when the lights are dim
You seem to let the sunshine in
Look around can you feel it
Look around and take it in, I love your
Fighting spirit, fighting spirit, fighting spirit
And I'm gonna fight for you everyday
No one knows what you're going through
No one sees the pain
You can take the world on
And show us the sunshine through the rain, I love your
Fighting spirit, fighting spirit, fighting spirit
And I'm gonna fight for you everyday
Sep 19, 2010
Rejoice
"Rejoice in your hardship, for from hardship comes endurance, from endurance comes character, and from character comes hope, which does not disappoint us."
~Romans 5:3
~Romans 5:3
Sep 17, 2010
Great Expectations
by Jenny of Lil' Samsquatch.
While I was a teacher-in-training, we heard a lot about having high expectations for our students. We were taught that our students will rise to the expectation that is set. I believed that ~ still do. After I finished my schooling and went into the classroom, this time as a high school teacher-in-charge, I found this to be true. I treated my students like little adults. They weren’t yet adults, just little adults ~ adults-in-training if you will. I expected them to treat each other with respect. I expected them to think and to work. I understood they had some learning to do, that they lacked experience…but that was ok. That’s what I was there to do; I would teach them and offer experience and in turn, they would grow, develop, and progress. And it really worked quite lovely. I adored teaching and adored my students. (After many years, I still get emails and wedding announcements! Love it!) When it came to parenting…being a mom-in-charge…I always believed the same thing that I believe in regards to my students. If I have great expectations (and smother them with love), then they will rise. Expect them to think and work. Expect them to respect and love as I respect and love them. As their mom, I’m there to help teach them and offer them experiences that would help them grow, develop, and progress. It’s really a beautiful relationship.
When Samantha was born, I was told not to expect much. She had a small brain (microcephaly) – way smaller than average. Hours after she was born, a doctor entered the room to talk with both me and my husband. He painted a picture with little hope. I’m sure he, like many doctors, understood that science doesn’t hold all answers, but in that moment, he was writing her destiny in stone. After the initial shock, I was absolutely crushed – because I believed the doctor. The expectation was set. Before she was born, we knew Samantha had microcephaly. I had done the research. I had hoped and believed that she would be “more” than what I had read, but when this doctor told me everything that she wouldn’t be ~ as I held her in my arms ~ all hope trickled away with each falling tear, because I believed him. Him. A doctor. Someone who “knew” told me not to expect much. And not only is that just plain hard to hear, but it went against everything I believed – everything within me told me that Samantha was a special little girl, a fighter, a champion, and she was going to do great things. But in a moment of weakness, I was crushed when he said those words. And I believed him. I believed him.
I am Samantha’s mother. I am her advocate. I’d like to think I am also her friend. We like to hang out together. I’m her companion, her nurse, her comforter, her chauffeur, her cook, her maid, her mommy. No matter what this doctor said, I knew deep down to the core of my core that Sammy was amazing and would prove him wrong. But his words have always echoed from the distance. And they bothered me. And I began to limit her in ways I was unaware. Let me give a couple examples: For one, I assumed that she didn’t understand what we’d say. Why? Just because she couldn’t talk, do I assume she can’t comprehend language? A small brain = inability to comprehend? Or how about walking? Imagine running. Whoa. That has been way out of my realm of expectations for her. Sure, we’d prove people wrong…when they said she wouldn’t roll over, I’d say, “She’ll be walking one day.” But I never even imagined that she would be able to run. I set limits to my expectations. Because of Him. The doctor.
Recently, I discovered this within myself…this lack of expectation for Samantha…these limits that I put on my daughter. My mom has always noticed it and pointed it out, and I’d quickly recover… “Well, no. What I mean is…” But she was right. I always thought I was recognizing her potential simply because I was assuming more potential within her than others were assuming. But just because I was doing that does NOT mean I was giving her enough credit for the amount of innate potential within her.
After feeling like a horrible mother for being this way, I realized a lot of us do this. For me, at least, it was a way to protect myself from heartache. If I didn’t expect her to do such and such, then I wouldn’t feel so sad when she didn’t get there. I’ve already cried too much. It was more comfortable to just go with the flow and be grateful. (Just for the record, I still think it’s s.u.p.e.r. important to go with the flow and be grateful.) I also didn’t want to come off an idiot. I didn’t want to be the mom who insisted my daughter was superior to the typical microcephalic case. And, I’ve since decided that’s just plain silly…every mother should believe her child is superior to the typical ______ case. That is being a mom. That’s what hope and love are all about.
This summer I went rappelling. I’ve never done that before, and many of the girls and adults at this camp didn’t do it. It was insanely scary to go over that cliff and trust the person who was my anchor – who was keeping me from plunging to the bottom, and ultimately my death. In my right hand was rope that was attached to my rappelling device. With this rope, I could choose how fast or slow I went down that cliff. I could go at my own comfort level (which to begin with was very slow). In my left hand, I held onto the rope that came directly in front of me out from my harness and also connected to my anchor at the top of the cliff. I didn’t have to hold onto this part of the rope. It made no difference in reference to my safety during my descent down the cliff however, I had to put that hand somewhere, and it offered some stability. Well, I was terrified. So, not only did I hold that rope, I held it quite firmly. I held onto that as if it was the one thing that was going to save me from falling. It wasn’t so, but it made me feel more comfortable. It was something I could hold on to. It was something that, while I went over the cliff, being completely opened and exposed to an environment I had never known in this way before, I could hold securely and somehow from which I felt some kind of comfort.
Well, ya know, when I got down to the bottom, I looked up and felt pretty good. It was fun! What a rush! I had overcome this cliff. And I had a very sore and shaky left forearm and hand to remind me of it! I had held on so tightly to what I thought was saving me that at the end of the journey, I had joy, but I also had a lot of pain.
The next day I went down the cliff again, and I had learned I could relax. I still held the rope with my left hand for stability, but I loosened my grip. It was a much more enjoyable experience.
As I’ve contemplated these newly discovered thoughts about my expectations for Samantha, I’ve realized that I’ve been rappelling and holding on to false security. Not everyone is placed in the role of “special needs” mom. This is a new experience for me. It can be insanely scary sometimes. And it’s hard to go over that cliff and do it…to live it. Sometimes I hold onto things that I think help or save me – like having lower expectations, or NO expectations for my special needs daughter somehow saves me from heartache. As I hold on tightly, and when the particular trial associated with Sammy is over, I find I’m a little achier than I need to be. With that said, I know there are circumstances that come up that will drain us emotionally, physically, spiritually, financially…but I’m looking at the overall picture. Must I create added, unnecessary, pain?
What can I let go of that allows me more joy? For me, it’s been a fight between “reality” and my own expectations for my child. How can I have high expectations for her and still accept the reality of her condition? The reality being that she does have deficits, that she is delayed, and that she may never _______ or ______ in this lifetime. For me, “reality” had taken too much of a role in my life. Over the course of 4 years, there have been two (among many smaller) experiences that have allowed me to release my grip on external expectations and allow my mothering and parental instinct to lead. I’ve felt free to have high expectations for Samantha and that has been most exciting and liberating.
When Samantha was 7 months old she started having horrible seizures. They were out of control and severe. We had an MRI and it was decided that we’d have surgery to open her closed sutures. It wasn’t that easy. There was debate between doctors. Our neurologist, based on his research and experience (shoot ~ he was head of pediatric neurology at Primary Children’s Medical Center!) suggested we not go through with the surgery. His words and expectations: “We don’t typically do this surgery for microcephalic kids. They have small brains. That’s their story.” We sought a 2nd opinion from Cedar Sinai in Los Angeles and after their response, we did the surgery.
Six months later, at a follow-up appointment with our neurosurgeon, Dr. Walker, Samantha’s progress was observed. I told him of some of my concerns, but also about her developmental progress. He told me that in his experience he hadn’t met a microcephalic child quite like Samantha. She had a severely smaller brain than any he’d seen, yet she was functional, and surprisingly, functioning rather well (all things considered). He told me that Samantha doesn’t fit a mold. “She’s done more than I or anyone else would have ever expected.” Here was a doctor, a professional with vast amount of experience, telling me this. I took courage in his words, feeling like I could let go of my grip a little bit and enjoy life a little more. I felt a freeing relief that I could expect her to progress. Up until then, I was holding my breath. Will she? Won’t she? When will things stop? How long will she live? Since I had put so much emotional stock in that first doctor who set a very low expectation for her life, you can imagine my exhale of pure relief (and a bit of vindication for my belief that she would have a very fulfilling life) when a doctor, with even more knowledge than the first (a specialist) told me that Samantha had great potential within her.
For years I’ve reflected on and found comfort in what Dr. Walker said. I would tell people who inquired that I really felt that Sammy had more within her than what we now see, but at times, it was almost as if I had to say it aloud to convince myself, or rather, to remind myself. It was a strange position to be in. I believed in her 100%. But I, too often, still allowed that doctor to invade my thoughts, beliefs, and expectations.
More recently (3 years since my experience with Dr. Walker), I have started devoting a lot of time to studying, reading, and researching. And from this time-well-spent, I have learned some great truths about the human brain. I have found it to be quite correct that the truth shall make us free. In regards to Samantha, I’ve never felt so free to dream and hope. All I’m learning is leading me to other books, therapies, and certain individuals who have been able to help Samantha immensely. And, through those, I am seeing changes in Samantha. I see her potential demonstrated each day. That is incredibly exciting! And for once, I’m starting to let go of that rope entirely and truly believe that she can do anything…who cares what others say? I want to be that crazy lady who believes in miracles, because ya know what? She is a miracle. Anything she does do is pretty great, and I’m ok with it.
A part of me wishes I had never needed Dr. Walker’s validation and my newfound learning to get to this point; I wish I could have just been “good” or “strong” or whatever from the beginning. But I’m human, and I like I said, this is a new discovery for me. I didn’t realize some of these feelings and what was fully going on until recently. See, there are two sides. One is filled with science, tests, diagnoses, data, experiments, and prognoses. The other is spiritual, instinct, intuition, and love (and I’m discovering some research to back it up too, which isn’t necessary, but cool). One takes science. The other takes faith and hope. In reality, I think we need a little of both, but if one is going to lead my family’s path, I think I’ll take faith and hope. I like that anchor far more than I like science that is constantly changing. Twenty years ago, we would have been told to institutionalize our sweet girl because she’d be a burden and wouldn’t accomplish anything. Yeah. I’ll take faith and hope.
I’ve always had that deep inner feeling that Samantha is great. It makes sense to me. I look in her eyes, and it just makes sense. Instead of relying on Him – the doctor – I’ve tried to rely on Him – the Lord. He knows all science. He knows all possibilities. He knows me and Samantha and He just. plain. knows. If I can more fully center my faith on the right Him, and look for the truth that surrounds me, I more easily enjoy peace of mind and far less heartache. My faith doesn’t exclude me from pain and sorrow and frustration and the occasional “why Samantha?” But it does help me remember that there is purpose in all things. And this greater purpose has slowly revealed itself to me throughout the years and will reveal itself in completeness one day. I have faith.
Samantha is 4 years old. We continue to have our struggles that come with special needs, but among other things, I have learned that what Dr. Walker told me about Samantha not fitting a mold isn’t just true for her. Most all kids that I have met or read about don’t fit the mold -- all of your kids I’ve read about don’t fit any mold. Their individual spirits are so powerful. They break molds. They reach expectations and then create a set of new expectations. Our spirits give us drive, allow us to achieve great expectations that only He can have for us.
And so I continue to fight for my baby girl and for all her little friends. I am still grateful for every minor improvement. I get super excited if she opens her hand up a little more than she did the day before. Or when she falls asleep on her own and sleeps through the night! (Wahoo!) But I also now allow myself to be free to expect more amazing things from her. I’m the mom. I set the expectation. I offer the opportunity and experience. I smother her with love. I learn from science and from others and all they have to offer, but follow my instinct. I let go of what holds her, and me, back. And as I’ve let go, we’ve had an increase of joy.
We are happy. And I like that. I like it a lot.
While I was a teacher-in-training, we heard a lot about having high expectations for our students. We were taught that our students will rise to the expectation that is set. I believed that ~ still do. After I finished my schooling and went into the classroom, this time as a high school teacher-in-charge, I found this to be true. I treated my students like little adults. They weren’t yet adults, just little adults ~ adults-in-training if you will. I expected them to treat each other with respect. I expected them to think and to work. I understood they had some learning to do, that they lacked experience…but that was ok. That’s what I was there to do; I would teach them and offer experience and in turn, they would grow, develop, and progress. And it really worked quite lovely. I adored teaching and adored my students. (After many years, I still get emails and wedding announcements! Love it!) When it came to parenting…being a mom-in-charge…I always believed the same thing that I believe in regards to my students. If I have great expectations (and smother them with love), then they will rise. Expect them to think and work. Expect them to respect and love as I respect and love them. As their mom, I’m there to help teach them and offer them experiences that would help them grow, develop, and progress. It’s really a beautiful relationship.
When Samantha was born, I was told not to expect much. She had a small brain (microcephaly) – way smaller than average. Hours after she was born, a doctor entered the room to talk with both me and my husband. He painted a picture with little hope. I’m sure he, like many doctors, understood that science doesn’t hold all answers, but in that moment, he was writing her destiny in stone. After the initial shock, I was absolutely crushed – because I believed the doctor. The expectation was set. Before she was born, we knew Samantha had microcephaly. I had done the research. I had hoped and believed that she would be “more” than what I had read, but when this doctor told me everything that she wouldn’t be ~ as I held her in my arms ~ all hope trickled away with each falling tear, because I believed him. Him. A doctor. Someone who “knew” told me not to expect much. And not only is that just plain hard to hear, but it went against everything I believed – everything within me told me that Samantha was a special little girl, a fighter, a champion, and she was going to do great things. But in a moment of weakness, I was crushed when he said those words. And I believed him. I believed him.
I am Samantha’s mother. I am her advocate. I’d like to think I am also her friend. We like to hang out together. I’m her companion, her nurse, her comforter, her chauffeur, her cook, her maid, her mommy. No matter what this doctor said, I knew deep down to the core of my core that Sammy was amazing and would prove him wrong. But his words have always echoed from the distance. And they bothered me. And I began to limit her in ways I was unaware. Let me give a couple examples: For one, I assumed that she didn’t understand what we’d say. Why? Just because she couldn’t talk, do I assume she can’t comprehend language? A small brain = inability to comprehend? Or how about walking? Imagine running. Whoa. That has been way out of my realm of expectations for her. Sure, we’d prove people wrong…when they said she wouldn’t roll over, I’d say, “She’ll be walking one day.” But I never even imagined that she would be able to run. I set limits to my expectations. Because of Him. The doctor.
Recently, I discovered this within myself…this lack of expectation for Samantha…these limits that I put on my daughter. My mom has always noticed it and pointed it out, and I’d quickly recover… “Well, no. What I mean is…” But she was right. I always thought I was recognizing her potential simply because I was assuming more potential within her than others were assuming. But just because I was doing that does NOT mean I was giving her enough credit for the amount of innate potential within her.
After feeling like a horrible mother for being this way, I realized a lot of us do this. For me, at least, it was a way to protect myself from heartache. If I didn’t expect her to do such and such, then I wouldn’t feel so sad when she didn’t get there. I’ve already cried too much. It was more comfortable to just go with the flow and be grateful. (Just for the record, I still think it’s s.u.p.e.r. important to go with the flow and be grateful.) I also didn’t want to come off an idiot. I didn’t want to be the mom who insisted my daughter was superior to the typical microcephalic case. And, I’ve since decided that’s just plain silly…every mother should believe her child is superior to the typical ______ case. That is being a mom. That’s what hope and love are all about.
This summer I went rappelling. I’ve never done that before, and many of the girls and adults at this camp didn’t do it. It was insanely scary to go over that cliff and trust the person who was my anchor – who was keeping me from plunging to the bottom, and ultimately my death. In my right hand was rope that was attached to my rappelling device. With this rope, I could choose how fast or slow I went down that cliff. I could go at my own comfort level (which to begin with was very slow). In my left hand, I held onto the rope that came directly in front of me out from my harness and also connected to my anchor at the top of the cliff. I didn’t have to hold onto this part of the rope. It made no difference in reference to my safety during my descent down the cliff however, I had to put that hand somewhere, and it offered some stability. Well, I was terrified. So, not only did I hold that rope, I held it quite firmly. I held onto that as if it was the one thing that was going to save me from falling. It wasn’t so, but it made me feel more comfortable. It was something I could hold on to. It was something that, while I went over the cliff, being completely opened and exposed to an environment I had never known in this way before, I could hold securely and somehow from which I felt some kind of comfort.
Well, ya know, when I got down to the bottom, I looked up and felt pretty good. It was fun! What a rush! I had overcome this cliff. And I had a very sore and shaky left forearm and hand to remind me of it! I had held on so tightly to what I thought was saving me that at the end of the journey, I had joy, but I also had a lot of pain.
The next day I went down the cliff again, and I had learned I could relax. I still held the rope with my left hand for stability, but I loosened my grip. It was a much more enjoyable experience.
As I’ve contemplated these newly discovered thoughts about my expectations for Samantha, I’ve realized that I’ve been rappelling and holding on to false security. Not everyone is placed in the role of “special needs” mom. This is a new experience for me. It can be insanely scary sometimes. And it’s hard to go over that cliff and do it…to live it. Sometimes I hold onto things that I think help or save me – like having lower expectations, or NO expectations for my special needs daughter somehow saves me from heartache. As I hold on tightly, and when the particular trial associated with Sammy is over, I find I’m a little achier than I need to be. With that said, I know there are circumstances that come up that will drain us emotionally, physically, spiritually, financially…but I’m looking at the overall picture. Must I create added, unnecessary, pain?
What can I let go of that allows me more joy? For me, it’s been a fight between “reality” and my own expectations for my child. How can I have high expectations for her and still accept the reality of her condition? The reality being that she does have deficits, that she is delayed, and that she may never _______ or ______ in this lifetime. For me, “reality” had taken too much of a role in my life. Over the course of 4 years, there have been two (among many smaller) experiences that have allowed me to release my grip on external expectations and allow my mothering and parental instinct to lead. I’ve felt free to have high expectations for Samantha and that has been most exciting and liberating.
When Samantha was 7 months old she started having horrible seizures. They were out of control and severe. We had an MRI and it was decided that we’d have surgery to open her closed sutures. It wasn’t that easy. There was debate between doctors. Our neurologist, based on his research and experience (shoot ~ he was head of pediatric neurology at Primary Children’s Medical Center!) suggested we not go through with the surgery. His words and expectations: “We don’t typically do this surgery for microcephalic kids. They have small brains. That’s their story.” We sought a 2nd opinion from Cedar Sinai in Los Angeles and after their response, we did the surgery.
Six months later, at a follow-up appointment with our neurosurgeon, Dr. Walker, Samantha’s progress was observed. I told him of some of my concerns, but also about her developmental progress. He told me that in his experience he hadn’t met a microcephalic child quite like Samantha. She had a severely smaller brain than any he’d seen, yet she was functional, and surprisingly, functioning rather well (all things considered). He told me that Samantha doesn’t fit a mold. “She’s done more than I or anyone else would have ever expected.” Here was a doctor, a professional with vast amount of experience, telling me this. I took courage in his words, feeling like I could let go of my grip a little bit and enjoy life a little more. I felt a freeing relief that I could expect her to progress. Up until then, I was holding my breath. Will she? Won’t she? When will things stop? How long will she live? Since I had put so much emotional stock in that first doctor who set a very low expectation for her life, you can imagine my exhale of pure relief (and a bit of vindication for my belief that she would have a very fulfilling life) when a doctor, with even more knowledge than the first (a specialist) told me that Samantha had great potential within her.
For years I’ve reflected on and found comfort in what Dr. Walker said. I would tell people who inquired that I really felt that Sammy had more within her than what we now see, but at times, it was almost as if I had to say it aloud to convince myself, or rather, to remind myself. It was a strange position to be in. I believed in her 100%. But I, too often, still allowed that doctor to invade my thoughts, beliefs, and expectations.
More recently (3 years since my experience with Dr. Walker), I have started devoting a lot of time to studying, reading, and researching. And from this time-well-spent, I have learned some great truths about the human brain. I have found it to be quite correct that the truth shall make us free. In regards to Samantha, I’ve never felt so free to dream and hope. All I’m learning is leading me to other books, therapies, and certain individuals who have been able to help Samantha immensely. And, through those, I am seeing changes in Samantha. I see her potential demonstrated each day. That is incredibly exciting! And for once, I’m starting to let go of that rope entirely and truly believe that she can do anything…who cares what others say? I want to be that crazy lady who believes in miracles, because ya know what? She is a miracle. Anything she does do is pretty great, and I’m ok with it.
A part of me wishes I had never needed Dr. Walker’s validation and my newfound learning to get to this point; I wish I could have just been “good” or “strong” or whatever from the beginning. But I’m human, and I like I said, this is a new discovery for me. I didn’t realize some of these feelings and what was fully going on until recently. See, there are two sides. One is filled with science, tests, diagnoses, data, experiments, and prognoses. The other is spiritual, instinct, intuition, and love (and I’m discovering some research to back it up too, which isn’t necessary, but cool). One takes science. The other takes faith and hope. In reality, I think we need a little of both, but if one is going to lead my family’s path, I think I’ll take faith and hope. I like that anchor far more than I like science that is constantly changing. Twenty years ago, we would have been told to institutionalize our sweet girl because she’d be a burden and wouldn’t accomplish anything. Yeah. I’ll take faith and hope.
I’ve always had that deep inner feeling that Samantha is great. It makes sense to me. I look in her eyes, and it just makes sense. Instead of relying on Him – the doctor – I’ve tried to rely on Him – the Lord. He knows all science. He knows all possibilities. He knows me and Samantha and He just. plain. knows. If I can more fully center my faith on the right Him, and look for the truth that surrounds me, I more easily enjoy peace of mind and far less heartache. My faith doesn’t exclude me from pain and sorrow and frustration and the occasional “why Samantha?” But it does help me remember that there is purpose in all things. And this greater purpose has slowly revealed itself to me throughout the years and will reveal itself in completeness one day. I have faith.
Samantha is 4 years old. We continue to have our struggles that come with special needs, but among other things, I have learned that what Dr. Walker told me about Samantha not fitting a mold isn’t just true for her. Most all kids that I have met or read about don’t fit the mold -- all of your kids I’ve read about don’t fit any mold. Their individual spirits are so powerful. They break molds. They reach expectations and then create a set of new expectations. Our spirits give us drive, allow us to achieve great expectations that only He can have for us.
And so I continue to fight for my baby girl and for all her little friends. I am still grateful for every minor improvement. I get super excited if she opens her hand up a little more than she did the day before. Or when she falls asleep on her own and sleeps through the night! (Wahoo!) But I also now allow myself to be free to expect more amazing things from her. I’m the mom. I set the expectation. I offer the opportunity and experience. I smother her with love. I learn from science and from others and all they have to offer, but follow my instinct. I let go of what holds her, and me, back. And as I’ve let go, we’ve had an increase of joy.
We are happy. And I like that. I like it a lot.
Sep 14, 2010
Artilepsy
The Epilepsy Association of Utah and the University of Utah Clinical Neurosciences Center present Artilepsy, an exhibition of original artwork, photography and home crafts by people of all ages living with Epilepsy. This evening illustrates the profound effect that epilepsy can have on human life and the courage, humor and imagination many show in facing it.
Entry forms can be found here.
Letters will be mailed throughout Utah inviting people to submit their original artwork to The Epilepsy Association of Utah by October 1st. If you would like to help spread the word, contact the EAU at (801) 566-5949.
Entry forms can be found here.
Letters will be mailed throughout Utah inviting people to submit their original artwork to The Epilepsy Association of Utah by October 1st. If you would like to help spread the word, contact the EAU at (801) 566-5949.
Sep 13, 2010
God Knows
Our Father knows what's best for us,
So why should we complain ...
We always want the sunshine,
But He knows there must be rain.
We love the sound of laughter
And the merriment of cheer;
But our hearts would lose their tenderness
If we never shed a tear.
Our Father tests us often
With suffering and with sorrow;
He tests us, not to punish us,
But to help us meet "tomorrow."
For growing trees are strengthened
When they withstand the storm;
And the sharp cut of the chisel
Gives the marble grace and form.
God never hurts us needlessly,
And He never wastes our pain;
For every loss He sends to us
Is followed by rich gain.
And when we count the blessings
That God has so freely sent;
We will find no cause for murmuring
And no time to lament.
For Our Father loves His children,
And to Him all things are plain;
So He never sends us "pleasure"
When the "soul's deep need is pain."
So whenever we are troubled,
And when everything goes wrong,
It is just God working in us
To make "our spirits strong."
So why should we complain ...
We always want the sunshine,
But He knows there must be rain.
We love the sound of laughter
And the merriment of cheer;
But our hearts would lose their tenderness
If we never shed a tear.
Our Father tests us often
With suffering and with sorrow;
He tests us, not to punish us,
But to help us meet "tomorrow."
For growing trees are strengthened
When they withstand the storm;
And the sharp cut of the chisel
Gives the marble grace and form.
God never hurts us needlessly,
And He never wastes our pain;
For every loss He sends to us
Is followed by rich gain.
And when we count the blessings
That God has so freely sent;
We will find no cause for murmuring
And no time to lament.
For Our Father loves His children,
And to Him all things are plain;
So He never sends us "pleasure"
When the "soul's deep need is pain."
So whenever we are troubled,
And when everything goes wrong,
It is just God working in us
To make "our spirits strong."
~ Helen Steiner Rice ~
Sep 10, 2010
Sep 8, 2010
Caterpillar Dreams
When I found out Chloe would likely be getting a wheelchair, I shared my feelings in this post. I was sad. I thought the wheelchair would be a negative thing for Chloe and for me. Rachel Coleman of Signing Times left this comment on that post. I was recently looking back at this and thought it was too good to keep to myself, so I've decided to share it with you all, along with one of the Signing Times songs, Caterpillar Dreams, that just goes too well with this subject:
"There are attitudes I have adopted and rules that I stand by as I stand FOR my daughters.
"We are raised with the idea that a wheelchair is confining. One day those words were in my head, someone had used them in regard to Lucy. "Oh, poor thing, confined to a wheelchair!" I started to giggle the more I thought about it. My response, "If a wheelchair is confinement, you should see how confined she is without it."
"Without the wheels she is a caterpillar. At 8 she can barely roll over, cannot sit up on her own and cannot crawl. The wheels are Lucy's wings. She can fly and spin and stop on a dime, she can "run" 5 miles per hour and never break a sweat. Her wheelchair is her freedom."
~Rachel Coleman of Signing Times
"There are attitudes I have adopted and rules that I stand by as I stand FOR my daughters.
"We are raised with the idea that a wheelchair is confining. One day those words were in my head, someone had used them in regard to Lucy. "Oh, poor thing, confined to a wheelchair!" I started to giggle the more I thought about it. My response, "If a wheelchair is confinement, you should see how confined she is without it."
"Without the wheels she is a caterpillar. At 8 she can barely roll over, cannot sit up on her own and cannot crawl. The wheels are Lucy's wings. She can fly and spin and stop on a dime, she can "run" 5 miles per hour and never break a sweat. Her wheelchair is her freedom."
~Rachel Coleman of Signing Times
I’m a little caterpillar tiny and green
Crawlin’ around head full of dreams
Inch by inch takes all day
I’m dreamin’ of wings and flyin’ away
Just a little caterpillar down on the ground
I climb a tree hang upside down
I don’t know why I build a cocoon
Not sure why I do what I do
But if I were a butterfly
I could leave the ground behind
Would things look different way up high?
I wish I were a butterfly
I’m just a little caterpillar fast asleep
Eyes closed tight lost in a dream
In my dream I break free
Stretch out my legs and check out my wings
I feel just like a butterfly
Watch me leave the ground behind
Things look different way up high
I feel just like a butterfly
Look at me I’m flying!
I’m really flying!
Somebody pinch me!
Crawlin’ around head full of dreams
Inch by inch takes all day
I’m dreamin’ of wings and flyin’ away
Just a little caterpillar down on the ground
I climb a tree hang upside down
I don’t know why I build a cocoon
Not sure why I do what I do
But if I were a butterfly
I could leave the ground behind
Would things look different way up high?
I wish I were a butterfly
I’m just a little caterpillar fast asleep
Eyes closed tight lost in a dream
In my dream I break free
Stretch out my legs and check out my wings
I feel just like a butterfly
Watch me leave the ground behind
Things look different way up high
I feel just like a butterfly
Look at me I’m flying!
I’m really flying!
Somebody pinch me!
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