Creatively helping to support her family
My husband and I are the proud parents to a tender-hearted, smiley-faced, special needs 3-year-old who has been the center of the happiest and most challenging times in our lives. We were elated, and very nervous, when we found out we were pregnant. During an ultrasound, we discovered that our little guy had Amniotic Band Syndrome (ABS). We were terrified and confused not knowing exactly what to expect; little did we know this was just the beginning of the many “soon-to-be discovered” complications.
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Our son, Jesse, was born two months premature [2] with missing fingers and toes due to Amniotic Band Syndrome. For unknown reasons, he was also born with polymicrogyria (PMG), severely clubbed feet, and bowel obstructions that required immediate and urgent postnatal surgery [3]. Eventually, we were able to bring him home with us from the NICU. When he was 5 months old, he became epileptic (a form of epilepsy [4] known as West Syndrome or Infantile Spasms), and his development regressed dramatically. Currently, he has a seizure [5] at least once a day and we are trying out different seizure medications desperately hoping that he will respond to something soon. Throughout his struggles with seizures, he’s had many other challenges that required multiple surgeries, hospital visits, and extended hospital stays.
On the bright side, the doctors at the Tampa Shriner’s Hospital for Children [6] have done an amazing job at separating his remaining webbed fingers and making them more functional. Weekly therapy is really helping! Jesse is extremely motivated and loves to play and be silly. He inspires us daily. My husband and I are so deeply in love with our little guy. We try to stay positive and encourage him to be confident. He has such a wonderful heart and spirit about him. It’s the hardest and most rewarding experience we’ve ever had.
About Bianca Derocher
I design and create handmade party decorations so I can stay at home and care for Jesse, while supplementing my husband’s income. Sometimes, however, it can still be very hard to make ends meet, so I entered my work in the National Cricut-I Made It! Contest. Much to my surprise, I was chosen as a top 50 finalist. If I win, I would get my own Make It Now project line on Cricut Design Space and a feature on The Design Network. This would help our little business get off the ground, in addition to providing some passive income. Jesse means the world to us, and we want to be able to care and provide for him the best we can.
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Read More: Real Moms Share [8]
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- Early Intervention: First Steps in the Right Direction [9]
- I Do Not like Being a Special Needs Parent and That’s OK [10]
- Coping with the Life You Never Imagined [11]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [12]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [13]
- Family Chat: Improving Lives with Positive Behavior Support (PBS) [14]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [15]
- How to Get Free From Unrealistic Expectations of Motherhood [16]
- Father’s Perspective: Raising a Child with Special Needs [17]
- Daddy Loves You: A Reminder for Daddies of Children with Special Needs [18]
- Being United, Pampering, and Taking Care of Ourselves [19]
- Avoiding the Power Struggles with Your Child [20]