National Microcephaly Day

Today is National Microcephaly Day. And so today, I celebrate my daughter.



And, I share some facts: Microcephaly affects 2.5% of the entire population. Microcephaly is a neurological disorder where the head circumference is less than it should be on a typical child. Microcephaly can be present at birth or can present itself within the first few years of life....Some children have mild to moderate delays, while many others have severe delays. Some children are diagnosed with Primary Microcephaly while others have an associated syndrome or a long list of diagnoses.

info taken from Foundation for Children with Microcephaly

While I was pregnant, we knew Samantha had microcephaly. We just didn't know why. Five years later, I may not know how she developed microcephaly, but I think I understand a bit why she has it. She has microcephaly to teach me. To help me. To guide me. To refine me. To share with me the love of God. And to make my heart melt ~ because we all should feel that. I said it today already, but I'll say it again. If microcephaly is responsible for giving me this gem of a girl, I'll take the whole package.

If your child or someone you know has a child who is diagnosed with microcephaly (or other closely related neurological disorder), you can visit the Foundation for Children with Microcephaly for more information and to connect with other families.

Eternally Grateful for Addie

Thank you to Jennifer of The Henderson Family blog for sharing this special story with us....

We hit the ground running and I would say that we never looked back, but that is not a true statement. We look back from time to time and see a fear that was so deeply imbedded in our hearts that we never thought our pain would subside.

How do you tell people that your baby has Microcephaly when you can’t even bring yourself to say the word? It took me 102 days before I could tell anyone Addie’s diagnosis. I was so driven from the moment of her birth to protect her from the world that the fear of judgment and rejection kept me from telling anyone the name of Addie’s diagnosis.

The little piece of paper that Addie’s diagnosis was written on sat on the dresser in my bedroom. It sat there collecting dust and I couldn’t bring myself to even glance at the word. The stigma of having a special needs child pushed me to avoid saying the name; all I could bring myself to tell people was that Addie “has special needs”.

Although there was no medical reason for me to believe that there would be something out of the ordinary with my unborn child, I felt it in every part of my soul. December 31, 2006 at 6:00 a.m., the deafening silence of the operating room confirmed what my heart already knew. My Sweet Baby Girl would have to fight for every accomplishment in her life and would always be known for her diagnosis.


Within two weeks of Addie’s birth, I had her set up for every available therapy that I could find for her. I spent virtually my entire maternity leave sitting in one practitioner’s office after another.

I buried the person that I used to be and I moved on.

I had a new goal in life and that was to educate anyone and everyone about Addie. I refused to allow anyone to disregard her and I refused to allow her to know anything other than pure love.

We hit the ground running alright.

My husband, Chris:


My son, Julien:


And I:


Have made it our mission to provide Addie with everything in life that she deserves and to give her every opportunity in life that any other child has, just in different ways.

We have settled into our new lives. There are days when I don’t focus on Addie’s disabilities and then there are days when the world feels like it comes crashing down. A friend told me not long after Addie’s birth that, “This life is not a broken dream, it's a different dream.” and so it is. My dreams vary from day to day. Some days I just dream of continued acceptance for Addie and our family and other days, I dream of being Superwoman, just so that I can take care of every worry in our lives.

Like most other parents of special needs children, we were given a very grim prognosis. The first neurologist spoke the words that could have paved the road for Addie’s future, “She will never walk, she will never talk, she will never function as a normal child”. He told us that he didn’t “mean to take away all our hope”, but that he wanted us to understand the facts. Instead of folding under those words, it was immediately decided in my heart that I would prove him wrong. I have spent the last four years doing just that..

The first year was by far the most emotional.


The unknown plagued my every thought. We worried constantly about every aspect of Addie’s life and the life that we were making for her. We made drastic changes to accommodate her potential future needs. We sold our home and moved to a home that would be more accommodating to the needs of a handicapped child. We bought a new SUV to accommodate the vast amount of gear that seemed to follow us wherever we went. We bought every item that could possibly benefit Addie in any way.
I spent countless hours researching and researching some more, looking for the answers that no one could give me. At the end of the first year, I allowed myself to realize that the answers would come only in due time. The only thing we could do was to push Addie to excel, to surpass all odds and to love her more and more each day.

I can’t tell you how many times I look in disbelief at the MRI images of Addie’s brain. I look at the photos and realize that the images before my eyes gives me no more insight to the life we live than the words that resounded through my heart as we were told that our child would “never function as a normal child”. Addie’s brain has several areas of concern, including an unusually small cerebellum, frontal lobe abnormalities and Cortical Dysplasia.

There are moments when all I focus on are the words that we have heard as people tried their best to predict our future. Then there are the moments when all I have to do is look into Addie’s beautiful blue eyes and I see the miracle that God has granted to us.



There is no scientific reason for the cause of Addie’s Microcephaly and we are at peace with that. It wouldn’t really matter if science provided us with an answer, we know that Addie is who she is because of God’s decision for her and HIS plan to place her into our arms. We are eternally grateful for Addie.

I tried to think of one story that would best describe our lives and Addie or that would make the most impact. It never came to me, I am still searching for a way to capture our lives over the last four years. If you are interested in learning more about Addie and our lives, please visit us at The Henderson Family.



(Professional photos courtesy of Kim Sharit at Kim Sharit Photography.)

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.

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.

Fearfully and Wonderfully Made

Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.


In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!

On April 17, our third son, Brayden, joined our family. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it did not make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of the tests were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life.



Brayden struggles with seizures and we try to regulate them with medication. He is severely visually impaired. Brayden has a G-J tube and is feed by j-tube (into his intestines) for about 20 hours a day. He struggles with chronic vomiting and we have been in and out of the hospital for it...alot. But at home we pump his stomach, by a big suction machine, several times a day for about 30 minutes. Developmentally he is close to a newborn. He cannot hold his head for more than a few seconds. He needs constant full support.

Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, physical therapist, feeding therapist, vision therapist.

One of the big questions is his condition, handicap, label, etc…Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.

· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hypoplasia
· To the GI doctor and feeding therapist: feeding difficulties, G-J tube, chronic vomiting

Brayden has a a lot going on and we are still trying to understand what all of this means. Thus my journey is understanding it all.

A list of Brayden's diagnosis:

Brain
Agenesis of the Corpus Collseum (ACC)
Microcephaly
Seizure disorder – partial complex seizures
Cerebral dysgensis
Pontocerebellar hypoplasia
Cerebral palsy
Nonambulatory

GI
G-tube, mickey button since April 2008
G-tube replaced with G-J tube Sept 2008
Delayed gastric emptying
Chronic vomiting
GE reflux

Eyes
Visual impairment
Optic nerve hypoplasia

Read more about Brayden and his mom, Carrie, on their blog.

Meet Hannah

By Jenn of My Little Rays of Sunshine.

Hi! I m Jenn. Thanks for reading our story!

I guess I'll start from the very beginning.
Four years ago I married my high-school sweetheart, Matt. He proposed in November, and we were married in February. We had a total of seventeen people present at our wedding. (Just our immediate family), and that s how we wanted it. Something fast. Something simple. We just wanted it done.

We knew we wanted children, so just a few months later we were expecting our first. Nine months after that Gracie Lynn entered our world. She was a joy. She was perfect. So much fun! We loved every little bit of having a baby around, so we figured we d have more. She needs a playmate!
How about we time it so they ll all be about eighteen months apart? Maybe we could have four, or five?
Our plans had begun!

Almost exactly eighteen months later, I delivered a very healthy, 6lb, 11oz Hanna Marie. Another perfect little girl.

My mom noticed when visiting us at the hospital that Hanna s thumbs appeared crooked. She seemed to hold them in her fists a lot. We asked the nurse what she thought about it, and she laughed and said oh, yeah! Hm...I'm sure they re positional, it's probably because she had them clenched in her fists for the past few weeks before she was born. They'll straighten out with time So, we let it go.
We got to go home, and show her off to everyone, and we were completely thrilled. Gracie was so proud to be a big sister. She couldn't be close enough to her new baby. She stayed by her side always, and didn't stop kissing her.

I had noticed in the hospital that Hanna had involuntary movements of her eyes. We were told that infants don t have complete control of their eye muscles until they re three months old, so we should just give her some time.
She didn't look at me when she nursed, and she didn't seem to notice toys or anything. It really bothered me. But we waited.
She was 10 weeks old when I found a website that had a little girl who's mother found her eye cancer by looking at a photograph of her. Her eye didn't have a red reflex like the other one did, and it appeared to have a white pupil.
Being the paranoid mother I am, I started looking at pictures of Hanna. In almost every picture of her, there was only one red reflex,
and one white pupil. My heart sank. I immediately started thinking the worst. I wasn't waiting any longer.

The next day I made an appointment with an optometrist. We were in his office two very long days later, and he saw a "mass" in one of her eyes. He had us go directly to an ophthalmologist to have her examined immediately.
This doctor was so cold-hearted, and had no bed side manner whatsoever. She made me hold down my screaming 10 week old while she poked and prodded at her. Matt stayed in the hallway with Gracie because she couldn't stand to hear her baby sister screaming so hard.
She then threw this at us:
Hanna had a "mass" in each of her eyes, which may be cancer, and probably some sort of syndrome because she doesn't look like her sister.
What?! She doesn't look like her sister, so she has a syndrome?
We left that office and didn't say a single word to that woman.
We didn't say a single word to each other.
We were devastated.
We were angry.
We didn't know what to think.
The same doctor wanted to examine Hanna again the next day, but this time in the NICU so she could sedate her.
I didn't want any part of that. I didn't want her touching my baby again.
I knew it was the right thing to do, and I knew it would get Hanna a referral to one of the best Children s Hospitals, and we wanted only the best for our little girl.

The next day, in NICU, Hanna had another eye exam. They ruled out cancer.
Thank God!
They said she probably has PHPV, which is commonly found in different syndromes, but they wanted another opinion.
Hanna was referred to SickKids Hospital in Toronto, and we saw another ophthalmologist. She had an ultrasound-type exam done on her eyes and she also told us that Hanna had PHPV.
She also noted that Hanna was microcephalic, which at the time, we had no clue what that was.
She referred us to Genetics to make sure there wasn't any more systematic abnormalities. She also wanted, yet another opinion. I figured the more people that looked at her, the better!
Next we saw a retina surgeon, and hoped he would be able to do something for her.
He looked in her eyes, and almost instantly ruled out what the other doctors were so sure she had! He told us that Hanna probably has a genetic eye condition called FEVR (Familial Exutative Vitreo-Retinopathy).
It is a progressive eye disease, which can lead to total blindness. He told us there was nothing that could be done, surgery wise, but he also said that you never know what the eyes are capable of.
We really liked him.
He also told us that he wasn't concerned for Hanna's health. She was small, but FEVR isn't usually associated with other abnormalities. He referred us to Ocular Genetics, and we left there feeling really good.
We were so relieved that it was only her eyes!

A couple months went by, and then we got the call from Genetics. We met with them and they examined Hanna looking for any abnormalities.
They noted her crooked thumbs I mentioned earlier, and that she was much too small for her age. She was diagnosed with failure to thrive and microcephaly.
They also heard a heart murmur. They referred her to MRI, for a brain scan, cardiology for her murmur, and X▴Rays of her hand for bone age, and to look at her thumbs.

What we thought was only an eye condition, most definitely wasn't anymore.
Now we were worried about her brain, her size, and her heart!
Her eyes became the least of our worries.

From then on, Hanna has had countless blood tests looking for possible metabolic problems, and chromosome testing looking for anything at all.
They can t find anything.

Her X-Ray came back with a bone-age much younger than her actual age. I m not too sure what that means, but they re not overly concerned.
The scan also showed that her thumbs have an extra digit. Like a finger.
So what!
She ll be a piano player!

Her MRI came back normal. Her brain structure is normal, but very small.

Her heart ECHO showed that she has three holes in her heart. Once again, they re not concerned. They should close up on their own in time.
They are keeping an eye on one in particular because it' s in the wall between the two chambers. It s very, very small, but it is possible it could cause problems.
She hasn't any symptoms yet, so her cardiologist is very optimistic.



At 16 months old, Hanna is not quite 15 pounds, and she is 28 inches long. She's very tiny, but that's about all they know.
We have been so grateful that all this testing came back so well. The doctors, on the other hand, are getting frustrated!
Anything they start to think she might have doesn't quite match up with her because she's hitting milestones.
It s like they want her to be delayed.
They want answers.
She's got them all puzzled.
I'm so proud of her! :)

CNIB (Canadian National Institute for the Blind) comes to the house once a month, and they completely thrilled with how great Hanna s doing.
She's not quite walking yet, but we were told that she is actually ahead of most blind children her age.
She doesn't have balance issues, she s just not confident enough to walk and explore on her own.
I think she's going to stick with crawling for a while.

She loves to dance, and sing, and babies, real or not.
She gives the best kisses, and hugs, and has the most contagious smile, and the best laugh ever!



She loves any music, and loves listening to her daddy play the guitar.
She's changed my world.
For the better.
She's definitely one of a kind. She's so special in so many ways, and I feel so blessed that I was chosen to be her mama.
Hanna has brought so much joy to our lives, and I wouldn't want our little mystery baby any other way!



To all the parents of special babies:

"Only special people get special babies."

I don t know about you, but that makes me feel pretty darn good. :)

Unexpected Lessons

a beautiful story about a beautiful girl named Oia Lee by her mother, Mo.


Better grab a coffee...


Rob and I were excited and full of anxiety once we found out we were having a baby. The pregnancy was planned and without complication. We decided right away that we would wait until “Peanut” was born to learn the baby’s gender. Finally on August 22, 2007, after nearly 41 weeks gestation, our daughter was born. We named her Oia Lee (pronounced E-ah). When our midwife flopped her on my belly immediately following delivery, we completely forgot the fact that we had no clue what this little being of ours was…a girl or a boy? I remember looking at this baby on my chest and feeling very surreal, almost numb. Gender was so unimportant. A curious nurse in the room blurted, “Well, what is it?” Rob blurted back “IT’S A GIRL!” but only after he lifted her leg not once but twice to confirm. (All along he had been secretly hoping for a girl.) Oia weighed 6lbs 3oz. She was slightly small for a full term baby but not completely out of the ordinary. Delivery was smooth and when I tell people that I enjoyed every minute of it they question my sanity but I truly did. She came out screaming and immediately latched on right away. Apgar scores were 8 and 9. She was perfect. We were sent home from the hospital two days later with smiles smeared across our faces.

Since babies spend the majority of their first few weeks of life asleep, we didn’t notice our first hallmark sign that something could be wrong. It was about two months later when we began noticing that Oia’s pupils were unevenly dilated. One appeared larger than the other and at times her eyes didn’t seem to be aligned together. Her left eye seemed to veer outward. At one of Oia’s well baby visits I remember the pediatrician asking me if I had ever noticed that Oia did not look at me with both eyes. I think I answered by saying something like “Yeah, but I just assumed that all new baby’s eyes were like that” and then she replied by saying that I was probably right. She said newborns have to ‘learn’ to control the muscles in their eyes and that we just needed to keep an eye on things. Done. Easy enough.

Another month came and went. No changes with her eyes. Sometimes her eyes crossed but mostly they strayed outward and seemed to work as two separate eyes, not as a pair. Our pediatrician referred us to a wonderful ophthalmologist to further assess this situation. I wasn’t sure what I thought or how I felt about this but I was glad to know that we would have answers soon and that surely this situation would have an easy fix. So, around 4 months of age, Oia was seen by Dr. W. We immediately fell in the love with this man. He was older in age, very experienced and compassionate. He made Rob and I feel as calm and as comfortable as possible. A big deal for new, now scared to death parents. Amazing as it is, he performed an intensive eye exam on our almost 4 month old and determined that she desperately needed glasses. He warned us they would be ‘thick’. Her visual diagnosis was intermittent esotropia. It felt like a blow at the time but I kept telling myself that if this was the worst of things we ever had to deal with then we could consider ourselves lucky. Glasses. Big deal.

I recall the day we went to the eyeglass shop to pick up her new glasses. I felt weak. Rob was much more excited than I was. Such a tiny, flawless face was going to be covered up by ‘thick’ glasses. I held her in my arms as I let her look over my left shoulder so that Rob and the optician could slide her new glasses on. She was most calm in my arms so this made since. She was still and patient. I couldn’t see what was going on behind me but a few seconds later I did hear the optician say, “There we go!” I pulled her from my shoulder and brought her in front of my face to take a look myself. And in that very moment, she looked at me (probably clearly for the very first time) and smiled the biggest smile I had seen yet. I lost it. That smile spoke to me. It said “Mommy, I need these glasses. It’s going to be alright.”



My very first unexpected lesson; find the silver lining. There is one in every situation. My daughter has glasses because she CAN see, not because she can’t see.

I still had a love-hate relationship with those glasses for some time. She did look cute as pie in them and after all they were pink, but still, they were glasses. I was nursing at the time and they seemed to always be in the way. I enjoyed nursing and the fact that something was interfering with this quality time annoyed me. I ended up just taking them off for feedings.

As Oia began to see her new world, she wanted to start exploring it. She immediately began reaching for toys and faces in front of her. This was so reassuring to witness Oia come alive as she seemed more alert and happy now with her new ‘view’. But soon after, a new issue, another hallmark sign that something may be wrong began to surface. Oia was only reaching with her left arm. She seemed to rarely, if ever, use her right arm at all. It remained close to her body and loosely fisted. I didn’t hesitate to call our pediatrician. She had no answers for us (though she probably had an idea) so again we were referred to another doctor; a neurologist. Our appointment was scheduled in a timely manner and we were nervous, to say the least, about the appointment but again, I was sure this was a problem with another easy fix. I remember sitting in the waiting room of the neurology department seeing all of the ‘sick’ kids. The ‘special’ kids. Were we in the right place? Our daughter was fine…it was just her arm that didn’t work, right?

Meeting the neurologist and the nurse practitioner for the first time was a weird experience. The room was cold and uninviting. I felt in my heart at that moment that the outcome of this visit wasn’t going to be a good one. Oia was examined first by the nurse practitioner. She asked a few questions and we answered them the best we could. The NP left and then the neurologist came in next to examine Oia. Both examinations were brief. During the examination with the neurologist we mentioned that Oia had a period of what seemed to be an exaggerated startle reflex. The ‘startles’ came randomly and without cause. The neurologist left and said he’d return in a moment. Waiting on someone to return to our room was dreadful. Time seemed to stand still. Once the neurologist finally returned, he laid it on us. He handed us a ton of bricks. He flipped our world upside down. I guess he thought there was no gentle way to deliver the news. As best as I can remember, this is what he said:

“There are 3 things you need to familiarize yourselves with. 1. Developmentally Delayed 2. Mental Retardation and 3. Cerebral Palsy.” There it was. The end of our life as we had always known it. Over. Rock bottom. Upside down.

Our Oia? Cerebral. Palsy. Two words that have taken me nearly two years to feel comfortable enough to say aloud. Oia was diagnosed as a spastic quadriplegic with microcephaly.

The rest of the conversation with the neurologist was a total blur. All I remember at that point was sitting in that cold room, holding Oia, and crying so hard that I shook. I could see Rob through my tears and he was sobbing, holding his head, shaking. It was THE WORST day of our entire lives. It was not fair. Not fair for Oia. What did she do to deserve this? It had to have been my fault. Just 7 ½ months ago we were upstairs in the same hospital meeting our ‘healthy’ baby girl. Proud. Smiling. Laughing. Overwhelmed with love. Feeling speechless. In awe. Now we were completely speechless for an entirely different reason.

That night Rob and I were zombies. We never stopped crying. We never stopped holding each other or Oia. We needed her close to us. We even kept her in our bed that night though we never really slept. All we could do was think of the future and cry. Will our daughter ever walk? Will she talk? Drive a car? Will she be able to live on her own? Would she go to college? Would she find love and marry one day? Would she ever be called ‘mommy’? Our thoughts took us to dangerous places in the distant future. It was a brutal place for our weak hearts to be.




Unexpected lesson #2: Take all things day by day, one step at a time and embrace each moment you have. All you have is now.

And unexpected lesson #3: We are not in complete control of our lives. We would have never chosen this for our daughter. We are at the mercy of God’s plan. I am ashamed it took an event such as this for me to see it.

The next step was an MRI which was scheduled for a few days later. Another cruel experience. Oia was to ‘nap’ through the MRI. That went over like a lead balloon. For those of you who don’t know, an MRI is quite loud. We had to return the following morning to try it all over again, this time with sedation. Better, but Oia still needed two doses of sedation to lie completely still for the scan. The MRI showed static schizencephaly with a present, but thin, corpus callosum. This was attributed to an intrauterine stroke which occurred early in Oia’s development, probably within the first trimester of pregnancy. An EEG was also scheduled following the MRI to understand Oia’s brain activity and hopefully explain those random startles which came and went in a month’s time. The EEG showed signs of irregular ‘firings’ in her brain so in addition to cerebral palsy, she was labeled as epileptic as well. We were given a prescription for a seizure med but we were told it was up to us whether or not we gave it to her. She didn’t really need it but we were told it wouldn’t hurt her to take it. The doctor mentioned that the med could make Oia irritable. We put that prescription in our back pockets and chose to not start her on it. We needed that smile of hers to get us through this mess and with no current seizures…we passed on medicating. Thank God that no clinical or sub clinical seizures have been observed to date and the startles have not come back and we pray this doesn’t change.

So now what? Our plates felt full. Our hearts felt heavy. We felt the need to jump on any and all opportunities that would benefit our already delayed daughter. We immediately contacted our states Early Intervention Service (we lived in North Carolina at the time) and the evaluations began. She qualified for physical and occupational therapy. I would rush home from work to pick up Oia from the sitter in time to make whatever therapy appointment we had. It felt like a rat race for a long time. Thankfully, as a teacher you have your summers ‘off’ and it would be spring soon. I wanted that school year over sooo badly and I wanted to NOT return to teaching in the fall. Before diagnosis, I cried driving to work everyday leaving Oia behind (even though she had a fabulous sitter) but now after diagnosis there was NO WAY I could justify spending the majority of my day in a classroom of 20 some children when I had my one child at home who needed me.

Summer came and we just tried to relax and cope with our new life. I still kept hoping and praying for a way to stay home with my daughter by not returning to the classroom in the fall. We began Oia on her first Constraint Induced Therapy (CIT) at The University of North Carolina. Oia’s left arm was casted for 21 days to encourage her to recognize and learn the use of her right arm and hand. She was already showing signs of developmental disregard for that side. The CIT program made a difference in that she learned she could move her arm and at the very least she learned it was THERE. That was a big deal.

Remember unexpected lesson #3…we are not in total control of our lives…we are at the mercy of God’s plan. There was a big change in our ‘plans’ which was no doubt an answered prayer. Early that summer, Rob received a call from a recruiter to run the daily operations at The University of Virginia Transplant Center. After 8 years in his current job, he was eager to start a new venture which made the professional decision to move very easy. Even though this was my opportunity to stay home now if we decided to make the move, it was still a very hard decision to make. Rob and I can make the most out of living anywhere but now we had Oia and her needs to consider. That changed everything. She received excellent care through NC’s EI Services and UNC but what care would Virginia provide? We spent a lot of time researching this and came to the conclusion that The University of Virginia’s Kluge Children’s Rehabilitation Center and Virginia’s EI Services would offer all the services that met our needs. Decision made. Contacted a realtor. Bought a house in Virginia. Moved 2 months later. The week that my school resumed for the ’08-’09 school year was the week we moved into our new Virginia home. God works in mysterious ways. A stay-at-home mommy at last!



Flash forward now a little over a year...early November 2009. We went for our scheduled 6 month check up with Oia's neurologist which brought a change to Oia's cause of Cerebral Palsy. Here is how that appointment unfolded:


I'll start by saying that Dr. T was so impressed to see Oia moving as well as she was and she even walked on her own into his office. He was pleased to see her using her right hand to help hold her sippy cup once she was prompted to use both hands with a verbal reminder. Dr. T said developmental progress is an outward positive of what's happening on the inside, ie. her brain activity. He asked us some basic questions...Is she eating well? Yes. Does she sleep well? Yes. Talking any? Not really, she's very vocal but not verbal. And then with some hesitation in his voice, he asked if we have observed any seizure-like activity yet. By the grace the God the answer was no. He is absolutely baffled by this. All of Oia's conditions, or brain abnormalities by medical definition align with seizures. Around 95% of kids like Oia have seizures on a regular basis and require medication. I knew her risks were high but I never realized it was that high. It makes my stomach flutter to think of this changing in just the blink of an eye. It could. It could all be very different tomorrow and seizures could be a part of our world at any moment which terrifies me. But my 2 yr. old teacher has taught me to live for today and be thankful and so that is what I will continue to do.

Dr. T reviewed Oia's charts again and MRI information and then declared something we never expected. Since diagnosis in April of '08, we were told and believed that Oia's cerebral palsy was secondary to a stroke in utero. As of today, that is not believed to be the case. For the last year, Dr. T has been digging deeper into Oia's files to study her situation and he believes with nearly 100% certainty that Oia did not have a stroke at all. She has schizencephaly (which we knew), not caused by a stroke but rather as a result of a faulty migration pattern of some brain cells to their final position in the brain. This disruption happens in just the very early days of fetal development. Why it happened is a mystery.

That was not really better news or worse news, just parallel news in our opinions. I will tell you though for me, as the one who carried this baby for 9 months, that news lifted what would have been a lifetime of guilt off of my chest. So, in a sense, maybe that was good news for me. I can't control the fact that Oia's brain cells migrated incorrectly but I felt guilt that she had a stroke. Thoughts of exercising too hard, working too hard, stress, etc. consumed me. I carry (carried) a lot of guilt and blame for the challenges that Oia faces. We sing the praises of a compassionate doctor who has not stopped following and studying Oia to determine the true root of her disabilities.

To date, she is acting more and more like a 'typical' 2 year old; with some opinion and sass yet so loving and patient. She is our greatest gift in more ways than I care to count. She is perfect just the way she is and continues to show us through her eyes what it's like to really live with joy in our hearts. Thanks for following our story.

Make Your Day Monday: Dreams Do Come True!

To follow are TWO special stories about TWO special boys who had a dream and that dream came true!....


Ben


Thanks to Make-A-Wish and a VIP, Ben and his family got to enjoy a Saturday at the NH Speedway. They were lucky enough to be inside a suite, where it was quiet...and warm, with unlimited beverages and food. Ben LOVED watching the races...and the cool crashes.

Thanks for a great family day Make-A-Wish!


Tucker
(click Tucker's name to read his amazing kidz story)

Have you ever had one of those days that you keep thinking "this day is so amazing, it is like a dream"? Tucker's family lived it! Here is their story....

We were given tickets from Shriner's Hospital. We received these tickets because Tucker has been a patient at Shriner's. It was so incredibly amazing we will NEVER forget it!! ... We were so blessed to experience this amazing day!!

We had no idea just how good these seats were!! We thought we were getting some good seats in the grandstands or something. They escorted us to the pit area next to the track on the second floor up above. There were tables and chairs and lots of food!! Couldn't even believe it!! They had coloring books for the kids, m&m candies, goldfish, jelly beans, drinks and bubbles to blow. We were given VIP wristbands and pit passes to go anywhere we wanted and see anything we wanted at any time!!!

Joan our escort explained to us that this was a gift from the Austin Hatcher Foundation. It is a foundation for pediatric cancer. Founded by a pediatric spine surgeon who also was a father of a child who died from an aggressive form of cancer. His name was Austin Hatcher Osborn. They called him "Hatch." Their story is a hard one to read but helps you understand why this foundation is what it is!! The foundations goal is to support research towards the diagnoses, treatment and development of a cure for pediatric cancer and to provide support and hope to children and families undergoing treatment as well as to those who have lost children due to cancer. Take a minute and click on Hatch to read their story!! It is through their generosity that we were able to live this dream!!





It was really like we were living a dream!!! The boys can't stop telling everyone about their amazing day!!

Read more about Tucker's exciting day at his family's blog HERE!