Friday, August 20, 2010

Introducing Samantha

Hi. I'm Jenny. I'm wife of Marcus. Mother to Samantha and Callie. I'm a happy person most days. But I think I'm pretty normal. I get frustrated and angry too. About 4 years ago, I used to get my feelings hurt a lot.

Just over four years ago, Samantha was born. We knew at 20 weeks gestation that she was not developing properly. This, we knew. We knew her head was too small. We knew there were some major concerns with this. We knew that it wasn't "normal" to have a head that was too small and we knew it wasn't "normal" to be monitored weekly by doctors for the last 17 weeks of pregnancy. But we also knew, through blood work, that though they didn't know what the problem was, they didn't think it was life threatening. Our baby had a good chance of living through the pregnancy.

We did a lot of internet research. "Small gestational head circumference." Google can be great, but can't it also just break your heart? I spent hours looking at different websites, trying to find out as much as I could about the unknown. It's quite challenging by the way. But among the things we knew was the fact that she had microcephaly -- micro (small) cephaly (head). During my pregnancy, though, I felt such peace. I felt a true sense of "It'll be ok." I took that to believe her head would be fine. Miracles happen. Some people would have called it denial. I called it faith.

They induced me early and had a team from the NICU ready to whisk her away. She came so quickly...and after 3 pushes (it helps having a small head), she came out screaming to the world. She was healthy, but small, and she was able to stay with us. No NICU needed.

Three months later we went to a geneticist at Primary Children's Medical Center in Salt Lake City, UT. She received the diagnosis of Primary Autosommal Recessive Microcephaly -- there was no genetic test to confirm it, but she fit the bill (though I had my own feelings that wasn't her true diagnosis -- but what did I know?). We were told it was extremely rare and that they couldn't tell us much. She did print off some things she found on it, and sent us home. Back to what I knew: I knew my daughter had a small head. I knew she was "healthy." I knew I knew it was going to be ok. And now, I knew she had this diagnosis. Things didn't compute. But it was ok...because things were going to be ok.

It wasn't until about 3 months later that I thought, "Things are NOT going to be ok." We were doing therapies and she wasn't progressing like the many other babies in our church group. People were staring at us in the store. Some asked questions that made me go to my car and cry -- "What's wrong with her?" It was so hurtful. I wanted to shake them and scream, "Nothing is WRONG with her. She's a beautiful little baby girl who happens to have a small brain. [insert insult here.]" I know, real mature. But I never said or did those things. I'd just answer their questions politely, "oh she was born with a genetic condition." Or if I didn't feel up to it, "She's just small. My itty bitty girl." And smile as I'd try to hide the tears. My emotions were very close to the surface as I was realizing that things weren't ok...little did I know they'd get worse...and I was feeling so extremely overwhelmed.

It was then I decided I couldn't live my life this way. I decided to change. What I felt before...that it was going to be ok, was true. It was going to be ok. Maybe not how everyone else thought, but it was going to be just how my Heavenly Father wanted it to be. Samantha was sent to our family, the way she was, for a reason. Maybe just to increase my own faith, or the faith of those around her. I decided to be strong, and to be the mother that Sammy needed me to be. I also realized that people can be insensitive without meaning to be. They are curious, and I didn't want to discourage people from asking questions. I wanted to educate them. After all, if what Samantha has is so rare, what an opportunity for people to learn how this amazing little girl with such a small brain can be.

A month later, life became more hectic and I was so glad that I had changed my attitude before we began the life of seizures, surgeries, and sleepless nights. Samantha is our angel. She really is. She is the sunshine in our day. She's tough at times, sure. But she is such a delight. The day she was born, I sat on the bed holding her in my arms. Marcus leaned in, and with his arm around us said, "One day, we'll look back and will say 'we wouldn't have it any other way.'" He's right. It took some time, but today, I can say that most of the time that is how I feel. I see how much she has changed us. She is quite the star at the local grocery store. They all know her. Before we moved, she regularly got suckers and stickers from the workers at the stores. She has a magical power over most everyone she meets.
We are still uncertain about her diagnosis. Most recently it was suggested to us that she may, in fact, have a form of primordial dwarfism -- Seckel Syndrome. When our insurance changes, we are thinking of pursuing genetic testing. But even if we never know for sure her scientific diagnosis, it's plain obvious that she is plagued with love, determination, and the purest most beautiful spirit. She's just my sweet little girl -- our lil' samsquatch.


Miracles Happen said...

She is SO cute!! I browsed your blog a bit. I think you have an amazing attitude. it is Hard no matter what. Keep your chin up... SHE IS GORGEOUS!!

PS.. who did your craniosynostosis stuff. We had ours done at PCMC with Dr. walker.

Jenny said...

Thank you. We certainly feel blessed. She's an amazing little girl. and...I LOVE Dr. Walker. In fact, our neurologist didn't want to do the surgery because of her microcephaly...but it was Dr. Walker that said he thought she would benefit from it. He was very professional and so all his years, he said he's never seen a brain as small as Samantha's, but he's never seen such progress with someone with a small brain. He said some very comforting and hopeful words that I cling to. Dr. Siddiqi was our plastic surgeon for the surgery...he actually did most of the work. Both of them are incredible doctors and I feel so blessed to have been put in their care.

Shannon said...

I think your daughter is beautiful! I have a special place in my heart for little tiny heads and cranio kids!

Dr. Kestle was our Neurosurgeon but Walker did it because Kestle couldn't come in that day. For us it was Dr. Siddiqui who didn't want to do it because of my daughter's diagnosis and Dr. Kestle went to bat for her. I think Dr. Siddiqui has since changed his tune. ;)

Thanks for sharing the story of you baby girl and some of the feelings you had when you initially realized that she wasn't exactly what you expected. Every special needs parent needs to hear just how normal those feelings really are.

Shannon said...

One more thing... I LOVE that your husband said this: "One day, we'll look back and will say 'we wouldn't have it any other way.'" isn't that the truth!?

Miracles Happen said...

We had Dr. Saddiqi do ours too!! His work is amazing. I LOVE Dr. Walker. I was so sad when we had to leave him but SOO glad to be back where I feel like someone listens.

Katherine said...

It is so good to hear your story. Even though my son's trials are different than Sammy's I think we can all learn from each other and support each other.

I am glad to see how upbeat you are. I think it is one thing other parents can't understand sometimes. We are so blessed to have these children. They enhance our lives and make us better people.

Sammy looks so happy and beautiful. Thanks for your story.

Luke and Erin said...

Those are some beautiful blue peepers she's got!
Your story had me in tears, it sound so much like mine.
I too hated questions, but after a while I think teaching takes the scary of out for some. So I am (almost) more than happy to answer!
Welcome to Thru the Tulips!

Melissa said...

Welcome Jenny! Sam is certainly an amazing inspiration and I am glad you found this blog. I hope it's a good help to you like it has been to me. My son was diagnosed with mild microcephaly almost 2 years ago. I know we are in different boats, but it's always nice to find someone who gets it. I look forward to getting to know you and Sam. She is beautiful!!

bbrhuft said...

Have they checked for Williams-Beuren syndrome, her features are suggestive of the condition.

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Pediatric Wheelchair

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Karma Ergo Wheelchair

Keep Posting:)