Something Special

Well it’s official, one of my paintings is going to be featured on the cover of Something Special Magazine! It is a painting of Hailey and I can’t disclose which one, you’ll have to check back soon to see it. “Something Special” is a Magazine that is both a hard copy publication and an online publication. It is a magazine that is dedicated to helping parents who are raising children with special needs by offering resources, giving helpful hints on therapies, vacations, food, just about anything that you can think of. This is a free publication and a well written and informative resource to have. They write featured articles on many topics such as learning differences, behavioral issues, personal care and many feel good and inspirational stories as well. The woman who interviewed me was such a sweetheart and a kind and understanding soul. It’s as if she knew me for a very long time. The magazine covers a wide spectrum of disorders. You can find articles on Cerebral Palsy, Down Syndrome, Autism, Chromosome Disorders, Tourette’s Syndrome and Juvenile Diabetes just to name a few. I am not sure which I am more excited about, the fact that my painting is being featured on the cover of such a wonderful magazine, or the fact that Hailey is going to be featured on the cover of a magazine! As you all know, it is this grandmother’s opinion that Hailey is already the most beautiful girl in the world, I think her beautiful blue eyes should be on the cover of every magazine, because she is that beautiful and her contagious smile just happens to light up all of Boston Massachusetts. Our cover is the upcoming FAll issue, coming real soon. Do me a favor, in the interim, while we patiently wait for it to be published, show these great folks some love and support, head on over to their facebook page, and tell them that Janet from Painting for Hailey sent you! Can you guess which painting of Hailey they chose? Which one do you think is worthy of a cover? If you live in the Georgia area, this magazine is easy to find you can pick one up in Savannah, Pooler, Macon, Atlanta and Charleston.

Heaven's Angel

Caleb Joseph Moody died on February 10th, 2012 at Primary Children’s Hospital due to complications from pneumonia. Caleb was born January 6th 2005 to Dallan Richard Moody, and April Baadsgaard Moody. He is dearly loved by his parents and his brothers Joshua Aaron, Matthew Dallan and Mitchell Ross, his grandparents Ross and Janene Baadsgaard of Spanish Fork, Utah and T. Dean and Patrice Moody of Kennewick, Washington, as well as 30 uncles/aunts and 38 cousins. Caleb’s spirit radiated pure love. He brought the love of God and light of Christ into the lives of all who knew him. Caleb’s life was a precious gift and a tender miracle. His winking eye was a daily reminder of Caleb’s deep love for all of us. Caleb could have quickly returned to heaven but instead he brought heaven to us for seven years.

April, Caleb's mom, is a member of the Kidz Krew and has shared many inspiring messages with us. Please include April and her family in your thoughts and prayers.

Keep Your Face to the Sunshine

It's a pleasure to introduce the newest member of the kidz krew, Bree of The Bugg's *Special* Life. Welcome, Bree!

Hi, I'm Bree and I love life! Just call me a life fanatic. Picnics, tea parties, cookies on the porch after school, a trip to the park, bedtime stories, the color yellow, family camp-outs, they all thrill me to no end! It took a very special teacher for me to realize that this precious gift of life is to be savored every moment of the day. His name is Wyatt, my 5 year old son born with a brain abnormality. He does not have a diagnosis, cannot walk or talk, and has the craziest curliest hair. I am head over heels for my husband, Brian, and love staying at home with our 3 children. I'm honored to be part of the Kidz Krew.

"Keep your face to the sunshine
and you cannot see the shadow."
~ Helen Keller

Exceptional Art

A lot of you may recognize this beautiful family as Zak, Nathan and Renee Charlan from Exceptional Family T.V. “EFTV” is one of my favorite online destinations to visit for new and current resources and advice for children with special needs. Advice given from other parents of children who are living the “Exceptional” life. I credit this family for their humble approach and ability to expose their private lives to benefit others. I personally would like to say thank you for giving us a voice and a connection with each other, and for all that you have done to facilitate this “Exceptional” community.

If you would like to have a 16 x 20 painting your child, please contact me at
www.harrold.janet@gmail.com This is a $700.00 value for $100.00+shipping. 100% of the proceeds go Hailey's Conductive Education Fund.

If You Knew the Beauty

Miss Lily Elizabeth

Death is ugly?
Oh, my children,
No.

If you knew
The beauty
That begins where
Your sight fails
You would run
Run, run
And leap
With open arms
Into eternity.

But sad
Is a harvest
of green wheat.

And
So you would
Feverishly
Cling to earth
And finish
Your mortal task
I merely gave
Death
An ugly mask.

-Carol Lynn Pearson

Lily Elizabeth finished her mortal task and this morning was taken to be with her Heavenly Father, Jesus, and proud big sister Charlotte.


Her mom, Erin, is a member of the kidz krew and we ask that you include Erin and her family in your prayers.

Wink Around the World

Caleb celebrates his 6th birthday this week!
My little miracle turns 6!
He's old enough to be in kindergarten!
He has 2 wiggly front teeth!


To an outsider looking in, his physical capabilities haven't changed much since he was a baby.
He body isn't able to hold his head, to sit or to stand.
His mouth doesn't know how to eat.
He needs help to breath.
His eyes don't always see.
His muscles need help to stretch and reach.
He loves to be held.


Yet...
insiders know

Caleb lifts
His smile radiates
He breathes hope
He winks
He reaches out
He holds us


Caleb loves. Really loves.
His little wink reminds us every day that love is his mission.
So this year Caleb has a special birthday wish for each of you.

WINK

Find a way to love someone. Really love someone.

*lift* smile* hope* wink*
*reach out* hold*

If you'd like to take the challenge, leave us a comment telling us where you're from - then spread the word! Let's see if we can share a Wink around the World for my little boy who has never uttered a word, yet who says so much- with a little wink.

Enjoying a Journey

Today's post is from Jennie, the newest member of the kidz krew! You can follow Jennie's story on her blog Enjoying a Journey. And here is her son's story....

First of all, I’m so happy to be a part of KIDZ. Raising a child with a disability can be overwhelming at times. I’ve only recently joined your community and already have felt a strong sense of strength and support. It is nice to know there are other moms and dads out there who share our family’s hopes and fears and also on occasion, our frustrations.

Hi, my name is Jennie. I’m a mother to four fabulous children, one of which has special needs. My beautiful boy, Jackson, is now ten years old. His name was chosen before birth. I always loved the movie, Steel Magnolia’s – a little cheesy, I know. But, it spoke to me. The movie conveyed a sense of sisterhood, family, trials, and endurance. It taught me that with a support system and sometimes a good cry, you can do anything. Now, over twenty years later, it seems a little more than the name of Shelby’s fiancé has carried over into my life.

Five months into my second pregnancy and through various ultra sounds, we were told Jackson had brain structure anomalies. Our fears were calmed when the prognosis was slight developmental delay. Our baby may just be slow to learn to walk. Oh, if that would have only been true, life would have been a lot simpler; less adventurous, but certainly more simple.

Instead we started our specialist appointments on day two after our hospital release. Doctor visits and therapy have continued ever since. As we searched for answers and solutions, delayed development, therapy, blood work, every type of specialist available, communication disorder, apraxia, failure to thrive, surgeries, pervasive development disorder, autism spectrum, and genetic testing became regular parts of our vocabulary, schedule and life. However patience, diligence, hard work, lots of faith, prayer and hope, seemed to have been the key for some relief, although, answers still would not be ours for another seven years.

In 2006, a new genetic test was developed. CGH Microarray changed our lives. This new technology was able to identify deletions or duplications that had taken place in DNA during development. Prior to this technology, only certain known syndromes could be tested for through blood work; thus, the reason for our unanswered diagnosis. Who would have thought to test for a small piece of DNA on the long arm of chromosome seven? No one.

The spring of 2007 set us on a new course when a correct diagnosis was finally made. Even though it was hard to hear that yes, a problem had been identified, it was also such a blessing and a relief to finally have a name for Jackson’s delays. It wasn’t a matter of bad parenting or a stubborn child. There was a reason why our child was unable to speak, was consistently fussy and hard to handle, a reason he struggled to develop relationships with others, and had difficulty learning to run, play and progress like his older sister. The name for our struggle was 7q11.23 Duplication. We would learn Jackson was one of only about 11 in the world known to have this disorder. I immediately tried to find others who knew what we were going through and who could identify with the challenges in our life.

Although we have a large family who loves and cares for us, we felt somewhat isolated. We weren’t sure where we fit into the world of special needs and we were often teaching doctors and therapists about the disorder. After learning all we could about 7q Dupe through our geneticist and through the limited information available online, a friend of mine pointed us to an organization in the UK called, UNIQUE. They specialize in providing support and information for individuals and families who have rare chromosome disabilities. Through the UNIQUE organization, I found two other mothers in the United States whose children share the 7q Duplication. I immediately searched them out.

Three years later, our efforts of supporting one another have led to the formation of a new non-profit organization called, Duplication Cares. Not only do we support the families and individuals with 7q Dupe, but steps are being taken to educate the medical community about the differences between the duplication and Autism. As with so many other syndromes, 7q Duplication mirrors autism and a large percentage of the children diagnosed with the duplication have also received an autism spectrum diagnosis. We now know there is treatment to help our children with the duplication. There is hope. Through hard work, progress can be made.

Our numbers have grown. Our small band of warriors is approaching 50 individuals in the United States. Our kids struggle with speech, social interactions, anxiety, behavior, and are developmentally delayed. Jackson also has a thin corpus callosum and enlarged brain ventricles which contribute to his delay.

At various times in our life, we’ve felt Jackson’s syndrome has been invisible to the outside world. This can be a blessing or a curse. Yes, at first glance, Jackson may seem like a shy, typical, ten year old boy. People have even commented about how lucky we are and that things could obviously be more severe. While that is certainly true, and we are immensely grateful for Jackson’s cognitive and physical abilities, we also have passed through the stages of grief and frustration every parent of a special needs child experiences.

Upon further interaction with Jackson, one would notice his lack of interest in carrying on a conversation. When “hard” questions like “What do you like to do?” are asked, Jackson becomes easily agitated. You may think it odd to find such a physically mature boy still clinging to his mom when he crosses a street, anxiety ridden that a car might approach. It will be concerning to see him have a meltdown when he didn’t get the first shower of the night or secure the middle bar stool at meal times. It will be easy to identify when medication in no longer effective and when ADHD, anxiety, and ODD take over. Yes, on the outside, our boy is not the typical, special needs child, but then again…. What is typical?

Our journey may be different from many of yours. However, I know a few things to be true. We all love our children and want desperately for them to be happy. We want them to be able to grow and mature and develop to their full capacity. We each have different struggles but I also know we each need support. Being a parent of a special needs child is often daunting; the therapy, the appointments, the procedures, the melt downs, the setbacks, and of course, the red tape. However, we also know the joys. We’ve met kindred souls who might not have otherwise crossed our paths. We are giddy with joy when our child speaks after years of therapy and silence. We celebrate each milestone and every acquired ability. And, we truly do know what it means to enjoy the journey.

Try This: Taga

Today's post is by the newest member of the kidz krew, Chrystal. We are so happy to have her!

Chrystal ~ Hunter's mom
Blog: The Wagner Family
(Read Hunter's story here)

I am a wife and mother of 2 wonderful children. Hunter is 5 years old and Cailtin is 2 1/2 years old. Before having kids, I was a middle school physical education/health teacher. I now am a stay at home mom. My son Hunter had problems at birth and was diagnosed with Alternating Hemiplegia of Childhood at 8 months old. It is a rare disorder/disease where the cause and cure/treatment are unknown. Hunter has come a long way in his development. He is an absolute joy in our lives. Life with a special needs child isn't always easy, but the blessings that come from it are huge. Hunter has taught me so much more than I could have ever imagined. I take it one day at a time and really try to focus on the positives. Kidz has been a blessing in my life. I have met some great friends who I treasure. I look forward to meeting more of you in the special needs community. Like Tara says, "We are all in this together!"

The following video is of a bike I found that I think so many of us could benefit from. It isn't made for special needs, but I think it would work. I know that for me it is hard to go out and do some of those "normal activities" with our special needs child. This is so inventive so prepare to be amazed. The actual website is www.tagabikes.com.

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.

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.

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%.

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.

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.

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.

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....

Amanda ~ Grace's mom
Blog: Shall Always Strive
(Read Grace's story here)

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!

April ~ Caleb's mom
Blog: Wink From Heaven
(Read Caleb's story here)

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.

Brandi ~ Matthew & Autumn's mom
Blog: Born From My Heart

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.

Erin ~ Charlotte & Lily's mom
Blog: Developmental Delays

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.

Janet ~ Hailey's grandma
Blog: Painting for Hailey

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

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 mom
Blog: 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
(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)

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!

Fly

Please add your prayers to ours for Becky and her family. Becky is a member of the kidz krew. Her son, Benjamin, passed away this past weekend.

Fly, fly little wing Fly beyond imagining The softest cloud, the whitest dove Upon the wind of heaven's love Past the planets and the stars Leave this lonely world of ours Escape the sorrow and the pain And fly again Fly, fly precious one Your endless journey has begun Take your gentle happiness Far too beautiful for this Cross over to the other shore There is peace forevermore But hold this mem'ry bittersweet Until we meet Fly, fly do not fear Don't waste a breath, don't shed a tear Your heart is pure, your soul is free Be on your way, don't wait for me Above the universe you'll climb On beyond the hands of time The moon will rise, the sun will set But I won't forget Fly, fly little wing Fly where only angels sing Fly away, the time is right Go now, find the light

A Baby Changes Everything

Indeed, our babies have changed everything about our lives.
The birth of the baby Jesus changes everything and is truly a reason to celebrate.
With His birth comes the hope and promise that all will one day
be saved from their suffering and be made whole.
He truly is Wonderful, and the Prince of Peace.

Merry Christmas from the Kidz Krew.
May you feel the wonder and peace of the season.

Wheels for Junior

Hi I am Junior and I am 11 years old. I use a wheel chair to get around and am getting to be a very big guy. I need a van to help me get to doctors appointments and also get out and enjoy life. My mom runs a blog where she does raffles, giveaways and things like that to help raise funds so I can get some wheels and stay on the move.

This week mom is hosting a raffle where the winner will win this cool "wheels blanket." You should go check out the blog for your chance to win! Thanks so much for helping us out!

Beat Boredom By Bringing the Beach to You!

Today's post is brought to you by our latest member of the kidz krew, so first up let me introduce you to Heidi, Junior's mom!....


I am a single parent to Junior who is eleven and has been part of my little family since he was two. He had Meningitis as an infant which caused bleeding on his brain and left him with various disabilities and health issues. Chronic lung disease, severe asthma, seizures and kyphosis are a few of the things he deals with. Junior faces many challenges but is determined to make the most of each day, he loves life and always finds a reason to smile. He brings so much joy to my life and has taught me more than I could have ever imagined. Life is very busy but during those rare moments of down time I enjoy reading, sewing, scrap-booking, any sports, and of course hanging out with my little guy. (You can read more about Heidi and Junior at their blog: Junior's Amazing Journey).


As you can see, Heidi is awesome, and we are so happy to have her! Now, onto her fun activity idea!....


Since Junior can't visit the beach, the beach came to visit him! The day was made complete with a lawn chair, umbrella, and salt water for his feet....

We did beach artwork, and Junior thought it was cool to put real sand on his picture!....


No trip to the beach would be complete without playing in the sand, and of course building a sand castle, in this case it looked more like a sand cottage. (we used moon sand)....



A tie-dye fish mobile (find out how to do this here)....


Junior loved having his feet in sand....


And making footprints too!....


Junior also made a paper bag whale. Junior thought his whale needed to smile....



Here are a couple other beach ideas that would be perfect for an indoor beach part!....


Beachball treats by Not Just a Mommy!....


Sharks on the Beach Treat by Her Cup Overfloweth....