Today is a day for looking on the bright side of things. It has been a very rough week for me in many aspects, so instead of a post specifically about autism or CF or any of my girls ‘problems’….I decided to focus on the good.
M is extremely intelligent. Her cognitive functions are off the charts. You can lay out ten wooden puzzles and give her one piece and she can put it in the proper space within thirty seconds.
K has a smile for everyone. She could be screaming and crying in discomfort during PT…and turn on a smile for her therapist in no time flat once the ‘work’ is over.
M has made leaps and bounds in her skills. She amazes us every day.
K’s language is developing so fast I can hardly keep up!
M’s first two days of preschool went so well, all my fears are relieved!!
K’s lungs have sounded perfect at her last two CF clinics.
M’s hair is growing in (finally) and she LOVES for me to put it up (I love to do it :D)
K has the funkiest dance moves ever.
That is it for now…I do have tons more…but I felt like being positive for a bit.
Coming this week, as I’ve focused so much on autism/PDD, I’ll be making some mention of Cystic Fibrosis and Hypotonia and how those have affected our lives.
Every parent whose child has special needs worries about insurance for their children. We “have” health insurance…but my husband works for a small company…and because of “rising costs” and “bottom line” the insurance they offer…well, it SUCKS. We are required to take part now in their HSA insurance…there is no longer the 80/20 of standard insurance. We have the “Benefit” of a low-premium, high deductible insurance package. For a single man in his 20’s…this is a GREAT plan…you hardly ever get sick, what difference does it make?
For a family of five on a very limited income, with two children that require special services…this is a horrible plan. Our deductible is $6000. Considering one visit to a specialist costs anywhere from $500 to $900, how can a family on a limited income live with such a thing? So…we apply for medicaid to help cover medical costs…but since we have “qualifying insurance coverage” on the girls…even though our income meets their levels…we still can’t get medicaid. We’d have to drop our insurance coverage on them for 3 months before we could get coverage for the girls. They don’t qualify for an income waiver, and even if they did the wait list is ENORMOUS.
The nations insurance on all children needs to be re-examined. With these HSA’s becoming increasingly popular in even the larger companies children are losing even more health care because a parent has to decide if they can afford the doctor bill to take their child to a specialist, or for that MRI…or the $1200 genetic screen that will finally answer questions.
I chose the name of this blog for a reason. One of the things I’ve found my struggling with the most is a very selfish thought…how do I redefine my vision of my children’s “perfect” lives.
When we’re pregnant we all dream of our children’s future. We imagine what they’ll look like. Who they’ll look like. The sports they’ll play, the life they’ll lead. Perfect visions of a perfect future.
Our logical brains tell us not to expect all of our dreams to come true, but it’s fun to imagine.
I, myself, pictured my girls as gymnasts and dancers. I was a dancer, a singer, and I hated sports. I thought my daughter would always be the same. She’d have long hair like I did to play with and do up. I’d be altering her dance costumes as my mother did for me. It would be perfect.
They were born still in the image of perfect. Donna, my older daughter, had a nuchal cord and was blue, but screamed right off the bat and pinked up fast. She was gorgeous. Downy white hair, bright blue eyes, the image of her dad. Kacie was tiny, four weeks early, my smallest baby yet…but perfect pink and smooth skin. Dark brown hair and deep dark eyes, the image of me. There was no hint of the challenges they would face, and our dreams remained intact.
As they grew and the small differences between Donna’s development and my oldest child’s started becoming prominent. She was frighteningly skinny, and she was not talking…at all. Then she was, but still so few words. We fought it, but eventually gave in to realize there was something different and we had to deal with it. It was our first, and we thought last, foray into the world of special needs. Speech Therapy, Occupational Therapy, Nutritionists. Our head was spinning. Today we face a future of a mild form of autism for her. It will affect her future, no matter how much therapy we do now. She will face challenges unique to her, and will struggle to join her world with ours. We will help her with this…but it’s not an easy road.
Our youngest Kacie’s first symptoms appeared at a young age, but we easily dismissed them. She had torticollis, but managed to overcome it when she started belly time and with some exercises with us. After that, we thought we were in the clear. Then the ‘airplane’ reflex in her arms persisted…and so we began therapy with her. But she wasn’t done there. She started coughing in February, continued for two months straight with intermittent fevers. We finally ended up with a diagnosis of CF, and then were referred to a neurologist because of her severe hypotonia. We’ve also detected a leg-length discrepancy. Her left side is also weaker than her right. She has been in the hospital seeing more specialists and having more tests then I ever thought my children would face.
So now I struggle with redefining perfect futures for my children. Do I think their limitations will restrict them in the long run? Maybe. Sometimes. I know that with determination they can overcome anything…but I have to face that none of these goals will come without bigger struggles just to attain ‘normal’, much less get beyond. That’s the part that pains me. Knowing that their struggles are greater. That their search is for ‘normal’ first, then beyond.
I will still have dreams for my children. I still believe that they each have the fire to achieve whatever they dream. But I’ve redefined perfect…and dream solely of them being happy, strong, patient, and kind…and hope that I can give them those important virtues.
Welcome to ‘Redefining Perfect’. This is my journal tracing the story of parenting two special needs parents. I hope to post relevant topics for all special needs parents, as well as my own tales of procedures and tests. If you have a special needs child, I hope you’ll participate, or at least find someone that understands. With my first ‘official’ post I will tell the story of how my families journey in the realm of special needs began and how it has become an ever-expanding world for us with it. I will also, in the next few days, explain the title of this blog “Redefining Perfect”. While somewhat self-explanatory, I would like to go further into it.
