Purchasing "things"

I did not write this.  Nor did I know Mitchell.  But I will tell you that this little boy and his family have forever changed my life.  I read his life story on their facebook page (https://www.facebook.com/#!/mitchellsjourney?fref=ts) and it is like they are looking straight into my heart.  As a mother of a chronically ill child who has a incurable terminal disease, these exact thoughts have crossed my mind many times.  But then I thought it is a good theory for everyone to live by.  Just something to ponder.  Here is the excerpt from Mitchells Amazing Journey on FB. 

"

MOMENTS THAT MATTER
Two days before Mitchell was admitted to the hospital for heart failure we decided to take our kids sledding near Park City. In my entire professional career, work was never more demanding than it was at that particular time. But I decided to delegate tasks and invest energy in my son, who I sensed was about to get very, very sick. If only I knew how fatally sick he would soon become. But we didn't know …. I just sensed time was running out. And nothi...ng else mattered.

Sledding that afternoon was so much fun. Mitchell had the time of his life. And when everyone was cold and tired and wanted to go home, Mitch asked to go on a few more runs … which we did. His appetite for life and adventure was nearly insatiable – which made his diagnosis of Duchenne Muscular Dystrophy an even greater tragedy and bitter irony.

Later that evening, after the sun had set, we drove into the valley for pizza and by that time Mitchell was beginning to get sick – the kind of sick you don’t recover from. The kind of sick that kills you. At first the signs of heart failure were invisible. He simply didn't eat anything. He just sat there with a smile on his sweet face. As often as we asked him to have some of his favorite pizza, he turned it down saying he wasn't hungry. We even ordered an extra pasta dish we were sure he would love, but he turned that down, too. We had no idea his heart was becoming catastrophically sick.

What you see here is a capture of the last physical adventure Mitchell took in mortality.

I had a Stake President (a leader in my church) who once said in a meeting: “Don’t ever apologize for taking your kids on vacation or purchasing something you can afford; there’s nothing wrong with that. Purchase ‘things’ with money. But whatever you do, don’t purchase ‘things’ with time.” I immediately saw the great wisdom in what he taught . . . his point was the proverbial “things” people are tempted to chase after … the boats, cars and houses and other trivialities people work so hard to pay for have the potential to cost much more than money. And all too often that is what happens; without realizing it, people pay too high a price with the one currency that cannot be saved, traded, borrowed, or exchanged: time. And time is the greatest currency of all. There is so much we can do with time – if we invest it wisely.

This photo is a reminder of moments that matter. This investment of time with my son will pay dividends for years to come. Had I not listened to my heart I would have been paying emotional penalties and interest for a lifetime. I am grateful I don’t have to pay the price of “what if”. I saw a moment and I invested time in it. No professional advancement, no amount of money, no material possession has the same value as this memory has with my son. There is simply no comparison.

Relationships with family are the most important investment. Anyone that tells you otherwise is selling something … and it’s not worth the price."

Special and Determined

Jacob's birth story shared by his mom, Marla, of Special and Determined....

I was born March 22, 2006 at 1:32pm in Naperville, IL by cesarean section. I weighed 7 pounds, 12 ounces, and was 20 1/2 inches long. The picture above was my christening picture in the hospital before my shunt surgery (16 days old). I was born with a congenital heart defect called Tetralogy of Fallot, which is a congenital heart defect consisting of four different abnormalities.

Tetralogy of Fallot involves four heart defects: A large ventricular septal defect (VSD) - a hole in the septum between the heart’s two lower chambers Pulmonary stenosis - involves narrowing of the pulmonary valve and the passage from the right ventricle to the pulmonary artery Right ventricular hypertrophy - the muscle of the right ventricle is thicker than usual An overriding aorta - the aorta is located between the left and right ventricles, directly over the VSD. As a result, oxygen-poor blood from the right ventricle flows directly into the aorta instead of into the pulmonary artery

Before I was born, my Mommy and Daddy wanted desperately to have a baby. They went through a year of infertility treatments until it got to be too much for Mommy. One unexpected day after Mommy stopped treatments, she found out she was pregnant.

Mommy’s pregnancy was considered “high risk” because of her age. The obstetrician recommended a few tests to make sure all was okay with the pregnancy. Mommy had a Level 1 ultrasound which is also called a “screening ultrasound” to check that there is normal growth of the baby and to look at the location of the placenta and to be sure there is enough amniotic fluid. During the ultrasound the Perinatologist discovered a hole in my heart. He told mommy that there may be a possibility of Down Syndrome because of this, and asked if she wanted to have an amniocentesis to confirm.

Mommy didn’t know how to feel about all this information except scared and overwhelmed and she didn’t know how to tell Daddy. After Daddy and Mommy talked and determined that they were happy to be having a baby and whatever God blessed them with they would handle it with a loving and open heart, they decided against the amniocentesis, and just had my heart monitored over the next 5 months to see how it was growing.

Mommy did all the things that expectant moms do. Started buying clothes, got the nursery together, tried mommy yoga (that didn’t go over that well) and had a baby shower. She wasn’t going to let anything ruin the excitement she was feeling as an expectant mom, she had waited far too long to be a mommy.

My Birthday: Well it was the day for me to come into this world and everyone was anxiously awaiting my arrival. Mommy and Daddy got prepped to go into the surgery for my delivery.

And here I was blue, as was told to Mommy & Daddy by the Pediatric Cardiologist before I was born. Mommy was eagerly awaiting the scream, after a couple of seconds there it was. Daddy never told mommy until just recently that I wasn’t breathing when I came out.

I got to see Mommy for only a few seconds before they rushed me off to the NICU to evaluate me. After what seemed forever, the Neonatologist came to the recovery room to tell Mommy and Daddy of the heartbreaking news…I might have Down Syndrome, but it won’t be confirmed until the karotyping (test to identify and evaluate the size, shape, and number of chromosomes in a sample of body cells) blood test came back from the lab. However there were other characteristics that would give them an indication I had Down Syndrome. The Simian Crease on my left hand (The presence of a single transverse palmar crease can be, but is not always, a symptom associated with abnormal medical conditions, such as fetal alcohol syndrome, or with genetic chromosomal abnormalities, including Down syndrome (chromosome 21), and a large gap between the big toe and the toe next to it on both feet.

Mommy and Daddy were quiet they didn’t know how to react to the news. Mommy was thinking it was her fault because of her age and Daddy just didn’t say anything, except “I’m going to call everyone to tell them the news.” Then the nurse brought a picture of me to Mommy. Mommy’s eyes started tearing up, she could see it in my eyes that I had Down Syndrome. Her heart started breaking.

It seemed like forever since Mommy and Daddy saw me so they wheeled Mommy down to the NICU to see me. I was hooked up to monitors and had an air bubble over my head to help me breathe, but Mommy wanted to hold me.

After two weeks in the NICU and several issues with my oxygen levels falling too low, I was transferred to another hospital were it would be determined if I would need surgery.

I had a Blalok-Taussig shunt put in at 16 days old to help with the flow of blood, so I could get stronger to have my complete heart surgery (open heart) when I was 6 months old.

Well finally 3 weeks and one day after I was born I was able to go home. My parents were so excited to get home and start living our lives as a family.

As I was getting stronger Mommy arranged for early intervention to start. I had a physical therapist come to my house to help me start to get stronger and help me to reach my milestones. I was scheduled to have my complete heart repair at 6 months old and they needed me to be strong to go through this major surgery.

Mommy would sit in on my therapies with Darla the physical therapist to learn all that she could to help me get stronger and help me reach my milestones. This is mommy helping me to stand with the encouragement of my pray bear. She used the step stool since this would help me to learn to grab on to something and pull myself up. She was very creative in what she used to help me reach my goals.

You can read more about my first six months in my book “Jacob’s Journal – My Journey Home”.

Follow me and my growth as I am now almost 6 years old.

Hope For Little Hearts

It is that time of year again. I try to update my blog at least twice a year about Brody. For those of you who would like to follow closer we have a site set up that will notify you about his conditions every time I update. It is www.caringbridge.org/visit/brodysabin .

Well with the Hope for Little Hearts auction on its way up I thought I would do a little update. For those of you who don't know Brody has Left Ventricular Non Compaction (it is a rare form of Pediatric Cardiomyopathy.) Brody was put on spironolactone to release the fulness in his heart. Many of you who have spent any sort of time with Brody know he has had a unexplainable croupy cough since birth, well the doc saw that his heart is full (we already knew that though.) As far as I understood it fills with more blood then oxygen which creates a fullness in the heart, which in turn maybe causing him to cough to get more of a oxygen flow. His left ventricle also has late filling which is a sign of heart failure. He also has a atrial septal defect, which doctor has said would be silly to repair and put his heart under that stress because it won't "fix" him. Below is a little bit more about the disease and auction.

I just want you all to know why I put so much effort into HOPE for Little Hearts. You all deal with my endless facebook postings and emails promoting the auction. Here is why: We live each moment to the fullest. If there is one thing this situation has taught us (in the words of my good friend, I kind of stole her family motto) "Prepare for the worst and HOPE for the best" HOPE, one of my favorite words. Some of you ask why I put so much effort into HOPE for Little Hearts, that one word is the reason. HOPE for more funding for research, HOPE for a cure, HOPE for all the families around the world, HOPE for one more smile, HOPE for another hug, HOPE for another "I love you", HOPE for another day. That is what each of you give our family. Each letter, each ticket bought for the auction, each volunteer, brings HOPE. If there is one thing I have learned through this trial it has been to look for something positive. With the dismal facts of this disease that was difficult. This auction brings HOPE not only to my family but to the many around the world waiting for a cure. When we feel like our lives are upside down, we always have HOPE to hang onto. We are so grateful for all of you and the HOPE you give us to hang onto.

What does Left Ventricular Non Compaction mean?
It means his Left Ventricle does not compact. It sometimes sticks together instead of pulling back apart and compacting. Which puts him at high risk for cardiac arrest.

Is this Common?
Effects 1 in every 100,000 children (according to www.childrenscardiomyopathy.org)

Is there a cure?
Search for a cure continues. Unlike other congenital heart conditions, there is no surgical treatment or cure that can repair the damaged heart or the stop the progression of the disease.

Can't he just get a heart transplant?
Getting a heart transplant is much more then just simply getting a transplant. In order for a child to get a heart transplant, the doctors have to approve. Heart Transplant Facts- Each year 80% of diagnosed children listed for a heart transplant receive a heart in time. Of the more than 100 children per year that undergo a heart transplant, the average three year survival rate is 77%. Late survival remains to be determined but is expected to improve with further research.

Doesn't the government fund research?
Federal research spending is disproportionate to the severity of the disease. In relation to other serious diseases, research on pediatric cardiomyopathy continues to be extremely under-funded even though the years of potential life lost in a child with heart disease is 2-7 times that of an adult. While the mortality rate for pediatric cardiomyopathy is higher than childhood cancer, and each year the number of children in the U.S. diagnosed with cardiomyopathy is 3 times that of pediatric AIDS, Federal research spending on pediatric cardiomyopathy is only a fraction (less than 3%) of what these other well known diseases receive.

How can I help?
Go to www.hopeforlittlehearts.org and buy your tickets and come to our 4th annual dinner auction March 12th, 2011. Tickets are 2 for $35 and include catered dinner from Branks BBQ. All proceeds from this event benefit The Childrens Cardiomyopathy Foundation

Also we need 5 more volunteers for The One Big Kiss for Childrens Hospital. It is a telethon. We will be answering phones and taking pledges on March 2nd from 6am to 8:30am at Childrens Hospital. All Proceeds from the telethon benefit Seattle Childrens Hospital.

Contact melissa @ melissa@hopeforlittlehearts.org

Hope For Little Hearts

Hi we are the Sabins. We live in Orting, Washington. We have 4 Children Logan 7, Brody 5, Rafe 3, and Cammie-Jean 1. (Mom Melissa and Dad Jacob) Brody was diagnosed in July of 2007 with Left Ventricular Noncompaction (a form of Hypertrophic Cardiomyopathy)

*Just a warning these statistics may seem dreary, but there is hope in every situation, and please keep in mind that of course we hope for the miracle. Which is why we named our foundation Hope For Little Hearts.



I remember being pregnant with Brody. I remember how excited I was. I had a miscarriage before him, and was so excited to be pregnant again so soon. I had low amniotic fluid while I was pregnant with Brody. I remember not being afraid, I was monitored every week for it. (Little did I know that was just the beginning of the doc appointments.) Well fast forward to August 5th, I was eating my cereal and yep my water broke. 6 weeks early!!! So off to the hospital we went. They took me down for a ultrasound, and sure enough all the amniotic fluid was gone. So 1hr later I was having a c section. I remember the first moment I saw him!!! I only got to see him for a second and then he was whisked away to the NICU. He spent a week in the NICU which isn’t bad for being so early. His doctor was concerned with his growth from the beginning. They tested all sorts of things. We started with cystic Fibrosis, then a swallowing study, then off to endocrine, then endocrine sent us to GI and finally GI to genetics. I kept asking them to test his heart. But they kept telling me I was wrong. So I figured they were the doc. Then I ordered all of his medical records and started doing research myself. Upon reading through the records I saw things like “mother refuses to follow diet plan” mind you their diet plan to bulk him up was to sit him at his high chair with a cube of butter. Lets just say good thing I didn’t. The thing that caught my eye was that his chest medical records showed peri-bronchial cuffing in his chest which is a sign of heart failure. So I called a cardiologist that day. I decided to quit messing around. His appointment was 7/24/2007 and he was diagnosed with Dialated Cardiomyopathy. But I didn’t feel comfortable with it. Something still seemed off. So we went to Seattle Childrens and he was diagnosed with Left Ventricular Noncompaction (another form of pediatric cardiomyopathy, it actually falls under the Hypertrophic Cardiomyopathy.) So if there is one thing I have learned is it parents listen to your gut!!! You are with them 24 hours a day 7 days a week. It is called practicing medicine for a reason!!! Yes they have the education behind them, but nobody knows your child like you!!!

I was sooo relieved to finally have a diagnosis. So was Jake. Although it was relieving to finally have a diagnosis the more research we did, the more we realized this was not a run of the mill heart problem.

Here is a little info on Cardiomyopathy taken from www.childrenscardiomyopathy.org

Hypertrophic CardioMyopathy affects up to 500,000 people in the U.S. with children under 12 accounting for less than 10% of all cases. According to the Pediatric Cardiomyopathy Registry, HCM occurs at a rate of 5 per million children. The cause of HCM is largely unknown but most cases appear to be genetic in origin.

Unfortunately, there is no current cure or treatment that can return the heart to normal or guarantee long term survival. Although occasionally children with certain types of cardiomyopathy do improve, the vast majority do not show any recovery in heart function.
For the child with left ventricular non-compaction cardiomyopathy (LVCM) that has symptoms of heart failure, medical treatment with diuretics, ACE inhibitors, and possibly beta-blockers may be used to alleviate symptoms and potentially help the heart muscle structure to normalize. If the patient shows signs of significant arrhythmia, antiarrhythmic medications such as amiodarone or sotalol, have been used for prevention of sudden death. In patients felt to be at risk for clot formation, anticoagulants such as aspirin are used. Patients with associated metabolic disorders may be given a mitochondrial metabolic disorder cocktail of Q10, thiamine, ribloflavin, and carnitine. Once LVCM is diagnosed, a neurological evaluation should be considered because of the high risk of associated neuromuscular disorders.

Cardiomyopathy is the leading reason for heart transplantation in children. Roughly 20% of infants and children with symptomatic cardiomyopathy require a transplant within the first year of diagnosis. While a donor heart can cure all the symptoms of heart failure and greatly improve survival, it is considered a major operation with considerable risks. Once a transplant is done, there are other possible issues to deal with such as infection, organ rejection, coronary artery diseases and side effects to the heart medications that treat these risks.

For a physician, the most difficult decision is determining when a patient should be listed for a transplant. Since donor hearts for infants or young children are scarce, there may be a long wait for a donor heart that matches the required weight and blood type of the child. Cardiologists generally do not want to list too early when there is still a possibility that the heart function may improve or stabilize. It is also not advisable to wait until there is severe heart failure and the child's overall health deteriorates. The child may then be too weak to survive a transplant operation or a suitable donor heart may not become available in time.

Extremely sick patients may require placement on an artificial heart-lung machine called ECMO to sustain them until they are able to receive a suitable organ. However, ECMO is only a short-term bridge to transplant option with neurological consequences to consider. For older children over 50 kilograms, a circulatory support device called the "Heart Mate Left Ventricular Assist System" by Thoratec may be used to "buy time" for end stage heart failure patients while they wait for a donor heart. It has been successful in extending a patients life by 3 to 12 months while providing a better quality of life during the waiting process.

They put him on Carvedilol when we found out what he had. We watched his athletic abilities (which weren’t much to begin with) decline before our eyes. It turns out that for some cardiomyoapthy patients that Carvedilol can actually worsen the symptoms instead of help. Of course Brody fell under that realm. We found that out in October of 2009. Luckily we figured that out, and slowly weaned him off of the medication, and we thought he was doing better, but at his doctor appointment last week the doctor explained to us that his Left Ventricle is filling later then last time. He has gone from mild heart failure, to mild/moderate heart failure. So we are going to try a new medication as soon as we see any signs of exercise induced breathlessness. He is also at high risk for sudden cardiac failure, which can be hard for some to understand since he looks healthy. We often get asked the question of well can’t he just get a heart transplant? So many factors go into that decision. The doctor is the only one that can put him on the list, and then the average wait for a heart is 280 days. A heart transplant is last resort, and unfortunately the only true “cure” as of right now.

We are still searching for a genetic cause, as you read most cases are genetically linked. We have tested all of the major ones, and have not found a genetic reason for Brody’s disease thus far. Jake and I are still trying to get him diagnosed as far as developmental delays are concerned, we see them and know they are there.



A little about Brody: He is a happy boy, with a smile that will melt you. He loves horses. He loves to be outside. He loves to help. He wants to learn, and tries very hard. He now says he wants to be a doctor when he grows up. He loves his doctor so much!!

A big help to anyone who is diagnosed with pediatric cardiomyopathy is www.childrenscardiomyopathy.org . Join the forum there!!! It has been so helpful to be able to ask a question to other parents who are going through the same thing. We also started a foundation as a family that we could raise funds to help further pediatric heart research. It is www.hopeforlittlehearts.org . It has been a great source of comfort to be able to feel like we are doing something to help. Probably the most helpful thing for us though is our understanding of the afterlife and knowing that our family is sealed, and we will be together forever (I.e. my favorite hymn Families Can Be Together Forever) is a great source of comfort. (If you want to know more you can check out www.lds.org) Knowing that our Heavenly Fathers plan is perfect, and He knows what is in ours and Brodys future. He knows exactly what Brody needs and when he needs it, gives us a great source of comfort.

Good News & Good Idea

What a great way to start out the new week.... Good news!



Our friend, Dallyn, who had open heart surgery just last Wednesday, is home (early) and doing amazingly well!!! His mom Shellie said he loved the blanket in the hospital, and now that he's home, he has been enjoying the music and books. Thank you, thank you for everyone's thoughts, prayers, and gifts sent for Dallyn and Shellie.

Wow. Doesn't that just put a big smile on your face? I know it does for me!

If you need another reason to smile, and you missed this week's kidz feature, go meet Mercede and Cheyenne.... they and their mom will teach you to live, love and laugh!

I could end the post there, and I'm sure you would all feel fulfilled, but I wanted to share this fabulous idea to do with your children while it's still the beginning of a new year....

Blissfully Domestic suggests doing an interview with your children at the beginning of each year. Type up the questions and answers, and leave a place for the child to draw a self-portrait. The interviews can be kept in their own binder, or an addition to a scrapbook. It will be fun to remember what mattered to your child at different ages, and see how that changes through the years!

Their list of questions for the interview includes....

Favorites:
cereal
vegetable
drink
toy
TV Show
game
book
restaurant
holiday
animal

If you could change your name, what would you choose?
What do you love about each person in our family?
Where would you like to go on vacation this year?
What are some of your wishes for this year?

Oh, I just think this is such a simple, easy and great idea! Enjoy doing this with the kiddos starting this year!

I just wanted to remind you that the kick-off party will be here before we know it. There will be three grand prizes (and boy oh boy are they grand)! There will also be daily giveaways. I would like the daily giveaways to be something handmade, to support the many mom-preneurs out there. I'm eyeing a few things on etsy, but I wanted to ask everyone's opinions. Do you have a suggestion for the daily handmade giveaway (under $40)? Let me know if there is an on-line boutique or etsy vendor you'd like me to consider.

Remember to spread the word....







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Happy Monday everyone!

Live, Love and Laugh

by Gayla at Where Are My Angels.

Gayla and crew, 2008

I have 4 kids. My first, Chris, is not mine biologically. He was my stepson I raised from age 5 on. I consider him my son. His father is the biological father of my oldest two daughters whom both have disabilities. I now live with my second husband, my daughters Mercede 18, Cheyenne 16, and Aysha 4 ½ . I'm 40 years old and my husband is 29. He is 11 years younger than me and 11 years older than Mercede (I just find that funny). My ex-husband is not a very nice person and after 13 years of marriage I left him. My girls also had to go thru therapy for 9 months because of damage he caused mentally to them a year after we separated. He is now serving time for some actions he tried to take against us that my girls witnessed.

When I found out I was pregnant for the first time, I was very excited but very fearful of having a still birth. After I found out I was pregnant, I didn't buy any clothing for my baby and didn't get anything ready until the last minute. I was afraid to jinx things.

I got pregnant 4 months after my 21st birthday. I was young and had a 6 year old step son I was raising. I was excited to have a baby of my own to love and care for. I had a normal pregnancy and only one sonogram (they didn't call them ultrasounds like they do now) when I was 6 months along. It didn't show any problems but they couldn't even tell me the sex of my baby either.

At the end of my 8th month I had a feeling my baby was going to be born soon. Three weeks before my due date I went to my OBGYN for my regular prenatal visit. The doctor seemed very concerned about the size of my baby. She informed me that my baby seem to be measuring a lot smaller than it should be. She told me she wanted me back in one week for another sonogram. I was so shocked that I forgot to tell her I had been having some cramps off and on.

I went to work upset about what could be wrong with my baby. A friend told me not to worry that her baby was born small too and was fine. Later that evening I went into labor which lasted almost 24 hrs. On September 1, 1990 at 4:20pm my daughter Mercede was born, she was born on my 22nd birthday. When they laid her on my chest she was sticking out her tongue and was blue in color , almost the same color as her blanket. I asked the doctor why she was blue and he commented "She's like a chameleon; if she were on pink sheets she would be pink".

She was taken from me and went to the nursery. An hour later a doctor came in and rocked my world. He wasn't our regular family doctor, but the one on call. We had chosen a family doctor over a pediatrician; because we wanted our child to be able to go to the same doctor we all went to. At the time we didn't realize what a horrid mistake we had made. The doctor informed us that our daughter was showing signs of Down syndrome or mongolism. I still can't believe that in the 90's a doctor used the word mongolism. It brought back a memory of my childhood when my mom told me that my best friend’s sister was a mongoloid and that she wouldn't live long. I knew what Down syndrome was, there was no need for the other offensive term to be used. A good friend of mine had a son with DS and he often spent the night with us.

I later found out Mercede was on oxygen and they couldn't tell me why. I sat in my room without my baby and cried and cried for the baby I had expected but lost. I pictured this new child of mine in a plastic tent on oxygen the rest of her life. I was young and didn't know a thing about babies, especially medically ill babies. Seven days later I was able to take her home off the oxygen.

There was a lot of confusion of whether she had DS or not. The doctors were sure she did, but the nurses told me they didn't think she had it. I asked my friend to come over and she told me she was sure my daughter had DS. So then I accepted that and moved on. A month later the test results came in. My family doctor told me she had translocation 21. I asked what it was and if it had a name like Trisomy 21 has the name Down syndrome. He informed me that it didn't but that it could be inherited. He wanted my husband and I to have our blood tested. He also told me that my daughter would be like a child with DS. So I went to a book store and ordered a book called Babies with Down syndrome, and that is how I found out my daughter did have DS. Translocation 21 was one of three forms of DS. I called my doctor to tell him that she did have DS.

I was shocked and upset. I couldn't believe this had happened to me. I didn't really think of her as a child at first. The nurses didn't let me hold her. It wasn't until she was around 3 days old that I mentioned to my doctor that I hadn't gotten to hold her. He was mad at the nurses for not letting me. They told me I couldn't since she was on oxygen. He told me I could hold the oxygen tube up to her nose. Then she felt more real to me.

My husband was in total denial. He refused to believe it until we went to the geneticist.

My step-son was just happy to be a big brother and he was a great one....

Chris, Mercede & Cheyenne, 1992

Chris, Mercede & Cheyenne

A few weeks later we found out I was a carrier of the translocation and that I would have a 10% chance of having another child with Down syndrome. My doctor set us up with a geneticist.

When Mercede was two months old we met with the geneticist. He was a very cold person, when he told me about my chances of having a child with DS, he told me I would want an amnio next time so I could abort if the child had DS. I told him that my husband and I didn't believe in abortion. The geneticist informed us that our baby was still young and that we would change our mind. But I do owe the geneticist for one thing. He listened to Mercede's heart and noticed right off that she had a heart defect. He sent us to cardiology just a few minutes later. Two hours later we find out my daughter had a severe heart defect and would need open heart by 6 months of age. If we didn't go to that geneticist appointment, Mercede's heart defect may have gone unnoticed until it was too late to treat it. It is supposed to be routine for all doctors to order echocardiograms on all babies with DS because almost half of them have heart defects. We changed to a pediatrician after that.

Mercede, 1992

I coped by learning all I could, getting my hands on anything I could read. I didn't have internet until about 10 years later. I couldn't find much information before that about Translocation Trisomy 21. I'm one who gets over things quick and moves on. I didn't grieve long, less than a few weeks. So I really didn't need help with coping about her having Down syndrome. The heart issues were another story. They scared me for years.

Almost two years after Mercede's birth. I gave birth to another daughter with DS. Cheyenne also had the same heart defect as Mercede. We discovered her heart defect in my 8th month of pregnancy. It was an AVCanal defect. The same heart defect her sister had, and one that is very common in babies with DS. We then knew she had DS too, we had declined any testing, except for sonograms and fetal echoes.

Cheyenne & Mercede, 1994

Cheyenne, 1999

Mercede was hospitalized a lot as a child but now is doing well. She still has to have more heart surgery in the future to replace her mitral valve and she will always be on heart meds. But you would never know it to look at her. She loves to dance, she loves working out to Richard Simmons video's. She is active in pottery class also....

Mercede

Mercede, while my most annoying child (trust me, she is, lol) is also the one that doesn't take others for granted. Mercede loves to be around other people that she can help. Mercede has fed the sick and the dying and also cared for them. She has laid beside her great-grandmother (whom had colon cancer) and rubbed her head and spoken softly (which is a feat , if you know Mercede) to her during her Grandmothers last days. She will often tell you about feeding her Aunt Mary (whom passed of Alzheimer’s last year) and what her Aunt didn't like to eat. She will also tell you they are with Jesus now. Mercede had a best bud for years that she liked to sing to and dance with. Her friend had CP and was 20 years older than Mercede. Her friend could not talk but could smile and laugh. She smiled and laughed alot when Mercede was around. Then a year ago her friend passed on, it was very hard for Mercede. But soon there was someone else to take her place. A woman with Down syndrome whom also had Alzheimer's. Mercede could make her smile and laugh. There would be a light in her eyes when Mercede was around. A few months ago, Mercede also lost this new buddy. But Mercede moves on, as she knows they are with Jesus now. When Mercede stays with my mom, her favorite thing to do (besides eating potatos) is visiting the nursing home with my mom. When she talks on the phone to my mom she will often asked how someone is that she is worried about. She is also getting frustrated with me, because I keep promising her that I will take her here to visit some church friends in the nursing home and I haven't done it yet. She is also very spiritual. She will often raise her hands in praise in church and also cry when the mood hits her. I don't know how much she understands about God, but it is obvious she feels his presence. At the same time, she can spell t-r-o-u-b-l-e!! At home, she is obsessed with the bathroom and can't stand to have stuff on the sink. She is always hiding the hand soap and hand towels. She hides shoes all the time. You can fine one, but not the other. I will find them in my bookcase, out in our fishing boat. It took me a year to find the match to my favorite pair of shoes. She will argue about anything. If I give her something to eat, she will say "I don't want it, I'm full", So I take it away and then she says "Nooooooooooooo, I want to eat!" So I give it back and then it goes on and on this way til I am pulling out my hair. At school she behaves herself, but on the school bus....................oh my. She has a collection of bus tickets. Just a few weeks ago, she choked the bus driver with his seat belt while he was driving. Now she didn't actually choke him, but she did have it pulled around his neck and he couldn't get it off. Course she giggles like crazy thinking it is funny. She also threw his jacket out the bus window. This is one of her favorite bad things to do on the bus, throw things out the window. She is like the character from the "Problem Child" movies, when she gets on the bus. She will be 18 this year and is only 4'5". Since her open heart surgery (mechanical mitral valve put in) she has gained like 10 pounds and now weighs 82 lbs which is fat for her!! lol When we go out to eat, they still give her childrens menu's and "Hey, you can't complain about a cheaper meal". Now her big thing is scratch off lottery tickets. She loves scratching them off.

Mercede, 2008

Mercede was a huge Barney fan while growing up. Needless to say, a mom can only take so much. So I banned her from Barney. Mercede was so upset that she went thru all my videos looking for something she liked. Then in the corner cabinet, under five inches of dust, she found Dancing to the Oldies. For the next few years Mercede worked out with Richard every single day. During the summer she worked out 3 hours a day, while I laid on the sofa eating chocolate and cheese curls shouting "Go Mercede! Go Mercede!" She was his biggest fan........well okay, probably his smallest (wink, wink). To cut a long story short. I pulled Mercede from school so she could attend a Woman's Conference in our home town that Richard Simmons was going to be at. Surrounded by hundreds of large women (me being one of them), little, tiny, skinny Mercede worked out with them/us. She was near the front of the stage and Richard called her up on stage. Mercede was so happy to meet him! When she does that mouth open, eyes rolled up toward heaven look, you know that she is on super excitement mode. He pulled her to the front of the stage, and then Mercede lost it. She slapped him away. While we didn't get THAT photo, we did get the priceless look on his face after it happened.

Richard Simmons with Mercede & other adoring fans

If you ever meet Mercede, she will tell you her version of the story. It goes something like this......"I slapped Richard Simmon's and made him cry."While she did slap Richard, and while he did cry. It isn't a whole truth, since he was crying on stage about 15 minutes before she slapped him. But hey, her version makes for a better story.

Cheyenne, 2008

Cheyenne is currently not on any meds and doing great. I was so excited to give birth to her. Mercede was such a joy that I actually wanted Cheyenne to have DS too, and was granted that wish.

She watches a lot of TV. She can stay at home by herself. She is such a flirt and has been for some time. At times it is funny and other times disturbing. lol She comes home every day from school with a story about either "her boyfriend" or the boy she can't stand. Of course these are the same boy. Sometimes she will be so mad she will go into her room and slam the door and throw a book at it. My husband has been worried especially when she said this boy had pushed her, he told me I needed to talk to his mother. I have known this boy since he was a baby (he is a year younger than Cheyenne) and he like her, has Down syndrome. His mother started laughing, when I told her my husband says I should talk to her about it. She was like, "Has he seen my son?" Nope he hasn't. Her son is tiny compared to my girl. She is much taller and much heavier. Like she said, my daughter could beat her son up!! lol ( I do know that he hasn't hurt my daughter, as the bus driver keeps me informed).

Every year she attends a summer camp and there is always a "summer crush", it is normally one of her camp councilors also. I didn't get a picture the first time but did the next two times. She will keep the picture until the next one. lol Well his and Brad Pitt’s picture, and Omar Epps (from House MD). In the past she had a crush on my husband. Boy this was a rough one. My husband is her stepfather and when we were dating, you could tell she had a big crush on him. When we got married, then she was horrid to him. She wasn't very nice for the longest time. Then she had, wait has, a crush on my sister’s husband. That is quite funny, because she all but ignores my sister and everything is "Hi Matt", ""What you doing Matt" etc…. Now, the most embarrassing crush has now developed. Last week, I couldn't find her at church, then I turned around and there she was. I can read her smile and see her giggle. Darn it, if she isn't flirting with our minister. I have to look back on my crushes. There were several teachers and even a cousin! YIKES, but NEVER a minister, of course mine were all in their 70's.

In 2004, I gave birth to Aysha, my first child without DS....

Aysha, 2008

Aysha is a translocation carrier like I am, she will have the same chances to have a child with DS too. She has been a handful since her birth. She isn't anything like my other two babies were. I think the next time I have a child, I'll be hoping for another one with DS.

Mercede will probably never be able to have alone time, she is too trusting of strangers and also doesn't react to danger appropriately. Both she and I are hoping that we can find funding to get her placement with one of the organizations here in town where she could live in an home with a few roommates. I didn't know how she would do with a workshop but she is working in one in a work program at school and liking it. I know she will spend time volunteering in nursing homes, as that is one of her favorite places to visit.

Cheyenne I can see working doing cleaning work, she loves to clean. I see her living semi-independent, as she can now stay home hours by herself. I see her one day getting married (if she could settle on one guy, lol).



My advice to other parents is to live, love and laugh....

If that doesn't work, Xanax and Paxil are great!

I work for an organization that supports people with disabilities and have ran across so many wonderful people with Down syndrome. I think everyone has a special talent, you just have to look for their abilities not disabilities....

Bernadette Resha

One of my favorite artists is Bernadette Resha . She is a married woman whom has Down syndrome and is an incredible artist, among other things.

The Tulip, by Bernadette Resha

Her display of Art can be found here.

For more information about Down syndrome, go here.

Warm/Fuzzy

Remember Dallyn? How could you forget this face....

Well, he's going into the hospital today in preparation for open-heart surgery, which will be tomorrow. And thanks to some of you for helping out (Martha, my mom - Saint Bonnie, and one anonymous person), I was able to deliver a package to Dallyn and his mom Shellie today, to help them survive this scary experience. Thanks to everyone's support, Dallyn has some books, a blanket, and some music for his time in the hospital. And Shellie has the knowledge that people support and care for Dallyn - I can't think of anything that could help her more!!! I'll keep everyone posted on Dallyn's progress. In the meantime, please keep him and his mom in your thoughts and prayers!

Now it's your turn! Create or pick out an inspiring post from your blog (keeping in mind, of course that inspiring has a very broad definition). Then just add your link to the Mister Linky, and you're all set! Then be sure to also visit everyone else's inspiring posts. What a great way to ring off the new year!





Everyone who participated in Talk to Me Tuesday in December was entered into a drawing for

a blanket made of this fleece fabric.

And guess who won....?!?!

Danyele from A Thorn Among Roses

Congrats to Danyele!!!

This month's giveaway will also be a fleece blanket. I think it's appropriate that those who participate in warm/fuzzy posts should enter to win warm/fuzzy blankets! This month's fabric can be seen here, modeled by Chloe....

The fabric was so cute that I had to get enough to make Chloe a blanket out of it too. The giveaway is for the blanket only. I'm keeping Chloe, and she'll probably want to keep her snowman. ;O)

Thanks everyone!

Love in Action

The other night while watching the news, I found myself feeling discouraged. Let me share just a few words that stood out to me: scandal, oppose, protestors, layoffs, torture, executions, crime, bad economy.... I could go on and on, but you've all watched the news before. You know what I'm talking about. There is a lot of negative. It got me feeling discouraged and anxious about the future. Then I realized..... there are so many good things I can do.

With that simple thought, my feeling of discouragement was replaced with excitement over a few ideas I have to help others. And I'm petitioning for your help! Let me start by introducing you to my friend Shellie's son, Dallyn....

I was going to describe him, but I think the pictures do a much better job than any words I could come up with. I will tell you, though, that he is 8-years-old. He is a lover of life and illuminates the room when he walks in.

Dallyn is scheduled for his 2nd open-heart surgery in January. His 1st surgery very nearly took his life and left him in the ICU for over a month. Needless to say, his mom is not excited at the thought of this surgery.

I am asking any of you who are willing, to send a little something for Dallyn or his family to help encourage and help them through this. I'm not asking for any grand gesture, but something small... a card made by your kids, a note to Shellie, a teddy bear your children don't play with anymore..... just anything you can give to help them. If you're interested, just leave a comment on this post and I will reply with information of where you can send your gift to Dallyn.

In this life we cannot do great things.

We can only do small things with great love.

--Mother Teresa

I would also like to ask any of you who are interested to join the spirit jumpers cause. This was a cause and idea created by Meaghan at I Kicked Cancer's Ass. She herself is going through significant cancer treatment right now, but is focusing on helping others. That is amazing.

I have been on both side of the spirit jumpers cause. I was able to help someone who is battling cancer, and felt the benefits of service in doing so. I also know that someone who was participating in Meaghan's cause was able to send something to Jack, my husband's uncle. Jack was recently told he has 3-6 months to live due to liver cancer and other complications. The gift that was given to him will lift him, but will remain after he passes to lift his wife and childlren. It is not about the gift, but about the feeling of love, charity, and hope that accompanied it.

If you would like to join the spirit jumpers, click here to find out how.

If you know of anyone who could use an outpouring of love because of struggles in their life, please let me know. I will do what I can do and try to get others to help as well. It is my hope that we can all feel the spirit of charity, whether you get involved in one of these ideas, or participate elsewhere. It is, after all, the season to give.

Here's to a better tomorrow for so many,