Cerebral Palsy Is So Limited

Cerebral Palsy Is So Limited

A few years ago, I had been feeling overwhelmed and victimized by Chloe’s special needs. I was feeling a little bit like Chloe’s diagnosis had stolen the life I had planned and completely taken over everything. I felt like everything I had ever wanted had been indefinitely delayed because of Chloe’s developmental delays and I did not like feeling as though I had no control in my own life. Well, I learned long ago that when I start to feel like a victim, I have to dig deep and find a way to become the victor instead. In this case, I was stumped…. I felt defeated. But I didn’t stop trying. I kept seeking a way to overcome these feelings. My answer finally came when I was looking for something to uplift a friend who is battling cancer. I found this print: What Cancer Cannot Do. Its message spoke to me. Please don’t misunderstand. I’m not trying to compare Cerebral Palsy to cancer. Cancer is undoubtedly a much different battle. But I believe the underlying message of that inspirational print works with many diagnoses. When I read it, the victim within me was quickly diminished by a new sense of empowerment. Yes, Cerebral Palsy has changed things, but it has not won and it will not win. It has given Chloe disabilities that have affected our lives, but it has not and will not disable our ability to live a happy and fulfilling life. It has not and cannot take away anything that really matters! In honor of this new-found sense of empowerment, I created this word art. The words are very similar to...
Talking to My Special Needs Child About Her Special Needs

Talking to My Special Needs Child About Her Special Needs

A few years ago, I got thinking about how Chloe is unable to move or communicate like she’d like to and all the frustration and behavioral issues that go along with that. I got thinking it might be nice for her to know why she’s unable to do those things. I realized that when other severe challenges come up in life, i.e. abuse, death, etc, the recommendation is for a person to go to counseling and talk about it. Shouldn’t that same principle apply with Chloe? So I sat her down and told her “the story.” I had told her pieces of the story before then and I always explained what was going on in the moment, but I had never sat down and explained everything. This time, she got the full scoop. I told her how sorry I was that this happened to her, but how grateful I am that she is so strong and brave through it all, that I am grateful to be her mom, and that she is an inspiration to me and many others. It was a very tender time. I didn’t just tell the story, I told parts, then asked her to talk to me about it. Even though she is “non-verbal,” she is very expressive and communicates in her own special way. And talk she did, in her own little Chloe babble language. Although I don’t know exactly what she said, I’m sure she was just getting out some feelings, and I’m sure that felt good for her. After all, we all need to vent now and then, right? Even with non-verbal...
Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

Diagnosis Highlight: FPIES, Food Intolerance — Guest Post

[title size=”2″]Meet Wyatt[/title] Wyatt was born on a beautiful June day, 3 years ago. He has been a fighter from his very first seconds. In the womb, he fought to stay alive and grow. In his first moments of life, he fought to live and to breathe. Wyatt was born without surfactant in his lungs to help them expand and spent some time in the NICU getting help breathing. After a scary week in the hospital, we brought our miracle baby home. From day one, he was a screamer. He screamed all.the.time. You may think that I am exaggerating here, but I can promise you I am not. We rocked him, we swung him, and he spent hours in front of the dryer in a vibrating swing because it was the only thing that helped calm him, even a little bit. I would wear him all day and rock and swing and bounce constantly to help him settle. If I did the dishes, I would put him in the bouncer and bounce with one leg as I did the dishes so that he would just cry, instead of scream, until he passed out. When I tell you that he never slept, I mean never. The doctor told me that he was colicky and to give him gas drops and rub his tummy. He would projectile vomit everything that went into his mouth. I was used to that, because his sister did that too, so I didn’t think anything of it. When he would fall asleep, he was propped on my shoulder in a certain way and he would moan...
Diagnosis Highlight: HPE – Guest Post

Diagnosis Highlight: HPE – Guest Post

Umm… I am sorry, could you spell that for me please? We said this for the first time on November 1st, 2007, about a week and a half after my daughter Dylan was born at just under 31 weeks at a whopping 2 lbs 8 ounces. We were asking the nurse because when we asked the doctor a few days prior he said, “It’s just a big word that’s used to describe a lot of things.” (Yeah, I can’t believe we took that as an answer either, but I am not sure we were ready anyway, a blessing in disguise?) Subsequently, we have been asked to spell ‘it’ approximately a hundred million times. The answer: Holoprosencephaly. Wait! Don’t Google, don’t ever Google…. Not yet anyway. Let me go first. Holoprosencephaly (HPE for short) is a brain malformation where the brain fails to split into four hemispheres. Usually there is no midline separation between hemispheres. It happens within the first weeks of gestation (just as you are finding out you are pregnant) and can be very mild to severe and incompatible with life. There are certain midline facial features associated with it, eyes are closely set, nose not formed properly, cleft lip and pallet. Completely adorable (if I do say so myself…). HPE is often diagnosed in utero; there is an online forum and new mothers come in all the time with so many questions. The main thing you hear the ‘been there done that’ parents say, over and over, is that no two kids with HPE are alike. They all write their own books. The brain is such an incredible organ...