13 October 2008

Betsy's Story


The whole reason I think I am blogging is to connect with other mother's like me. I am in a dark place lately, and am only slowly seeing the light. In August of 2004, I gave birth to my third baby. A beautiful girl, our first girl. She came via c-section (another first for me) because of her breech presentation. She weighed a healthy 7 lbs. 7 oz. She had great apgar scores, all in all, a normal Cesarean delivery. We named our sweet girl, Betsy Jane. I felt high on life. Each and ever birthing experience is quite spiritual, and this was certainly no exception. I was relieved to put an end to a pregnancy riddled with severe morning sickness, complete with iv fluids because I could stomach nothing else. But it was all worth it, at that moment in August, when they placed her healthy, little butt in my arms.

The following months were a blur of nursing, two active toddler boys, nursing some more, and reflux, yet another first for us. When Betsy was not quite 4 months old, I started noticing little things that bothered me. She made no attempts to move; no head movements or rolling attempts. She also didn't appear to have reflexes that many new babies have. She would smile, but did not visually attend to anything. I said something to my husband. "Don't worry, all babies are different." I didn't buy it. Next, I approached my mom. "Well, I was going to mention something about her eyes. I think you should talk to the doctor." Ah, the Eternal Pessimist, she's always good for a spoonful of reality.

At the 4 month check-up, my fears were not put to rest, but rather I was told the DOCTOR would make Betsy an appointment with a pediatric neurologist. The doctor left, after handling me with the utmost care, and when he returned I was told the neurologist would see us in 2 weeks. Fast forward through the second worst wait of my life (more on the very worst later), the neurologist confirms there is a significant delay. "I propose some initial tests that I would like done as soon as possible. Can you drive down to Children's Hospital this evening to get started?" Whoa, slow down!

What followed was months of diagnostic tests and questions about my pregnancy (including about 3,678,878,293 people asking me if I drank or used drugs while pregnant. Uh, no and no). We saw geneticists, eye doctors, orthopedic surgeons, the neurologist. It was a whirlwind to say the least. Every procedure included anesthesia because of her low tone, even her MRI. And at the end of those months of testing, Betsy had no diagnosis.

Betsy is now 5, and still has no diagnosis. (Well, technically, it is static encephalopathy. This is a catch-all term, much like, cerebral palsy. Click here to learn more.) The good news for us is that she is healthy as a horse. She attends special school 4 mornings a week, and receives occupational and physical therapy (OT and PT), speech therapy, and individualized classroom instruction. More importantly, she has her family. We love her and support her, and celebrate every accomplishment, no matter how small, with her. She is special, no doubt, and we rally around her in a way that is normal to us now. She IS the odd girl out, but in the very best sense.

11 comments:

  1. I JUST NOTICED YOUR WEBSITE...its rosie mundwiller from facebook...im glad i added ya and you excepted me, your are a beutiful great mother and your writings are witty and punctuation and spelling is so not like mine, lol... but i do enjoy reading your status.. im thinking that we are not related envn though i have lottsa family in the stl area.. just wanted to tell ya i have a grandson with downs, hunter, ya might have seen him on my pic.. hunter is special in so many ways.. my biggest concern is when he gets older, he gets alotta attention now because he is so funny..your lil girl is a doll, and i can see ya in her even though i dont know you..you look like a very happy "together " family and God gives these special kids to the ones most suited to take care of them.. i love your website and im glad i noticed it...take care and will catch ya on facebook..rosie

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  2. Hi, i just read your story of your beautiful daughter Betsy Jane!! An angel and gift from God for sure! I know as God has blessed me with two Special Needs children! Mine are older, 29 and 21. My son(21) is autistic but I say he's awesome. With mine being older it does make a difference. My son is living in a group home. My daughter(29) is still at home she is high functioning but still needs help with certain things. She is in a workshop. Her needs came from a seizure disorder at the age of 2 1/2. She seizured up to 50-60 times a day! But as time has gone by I realize God picked me special for them! and them for me!! They make you look at life in a much different way! Better! I now have a bladder disease that keeps me in alot of pain daily, and that is why my son is living away! I love your banner it shows your family love! That pic of you and your husband rocks! If I could give you one bit of advice it would be to make sure you go out on dates with your hubby! Take time for the two of you! It helps so much! And don't forget to take care of YOU! If you ever need anything just e-mail. In Gods love, Fran. XOXO

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  3. Hi. I just read the story of your remarkable baby girl...now, not a baby anymore. I stumbled upon your website and I'm glad I did. I have a similar story, however, mine is just beginning. My daughter is 17 months and has "hypotonia" and they are tossing around a CP or SE diagnosis as well...Of course we won't know for a while. Thanks for sharing your heart. I look forward to reading more and hope to find more answers out there until we know the truth!

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  4. Just discovered your blog, and I am in love. My job, my career is centered around kids affected by Fetal Alcohol Spectrum Disorder, another form of Static Encephalopathy. I am really enjoying reading your antics! It takes a wonderful mom to go through the days of a child with brain dysfunction! Love it!

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  5. A friend of mine emailed me a link to your blog...she thought I needed to gve it a look. Glad she did. I'm a mom of 3. My baby Lake, 3 months, Jude, 2.5 yrs, and River. River is 5 years old and has similar charecteristics to your daughter. He too is undiagnosed. If you ever want to talk to another momma of a uniquely perfect baby you can find my email at caringbridge.com/visit/river
    Off to explore your blog :-)
    Jessica

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  6. I followed a link for your fabulous kitchen remodel. Have just read this and am touched. I have a son with Asperger's Syndrome. Having a diagnosis broke my heart, it made it real, but had the benefit of actually knowing what it was and moving forward and helping him. Can't imagine what you all must have been through. Betsy looks like a beautiful, happy girl. Well done xx

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  7. what a touching story and written with so much love.
    malia
    www.yesterdayontuesday.com

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  8. great to find you - my story seems soo similar in many ways - my second baby - Charlotte - is now 16 mo.-assessed to be 10+ months behind at this point. She has feeding problems, vision problems, very low tone, speech delays. i noticed she wasn't like my first child by 4-5 weeks. we are working hard with OT/PT, speech, etc - and when they aren't around - we are at a specialist's office ordering more random testing. static encephalopathy is the best anyone can tell me. i feel so sad about it all - it has been so hard on my husband too (he is a stay at home dad)
    will keep tabs on your blog...thanks for sharing your story

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  9. Just came across your lovely blog. My heart goes out to all the commenters above. My daughter just had her 2nd birthday. She has DSydrome. She has had a rough go. We are very lucky here in British Columbia with our health care. She is adorable. Your video regarding the Siberian institutions is beyond what I can imagine. I have so much to say but need to get to bed. I will check back with you. Wish there was something I could say to shed light on the darkness so many are experiencing. Your daughter is lovely. I do know that I just take one day at a time and sometimes just one moment at a time. Somehow you find the strength. I discovered blogland when I was at Children's Hospital. I found so much inspiration in this. Thank you so much and my best, Sheryl from www.daisyexpress.blogspot.com

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  10. I just came across your blog from reading about your kitchen reno on Young House Love. I knew there was something about you that I really resonated with. We have three boys, and our second son has Prader-Willi syndrome. While he does have a diagnosis, a lot of what we face with him sounds similar to what y'all have been through with your sweet Betsy (who is adorable, by the way, in case you didn't know ;)). Thanks for putting her story out there.

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  11. Glad I found you. These experiences are so foreign to other families.

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