I didn’t know what I was in for when I heard the words “special needs child.”
I now know—and although I wouldn't change our lives for the world - I do wish things would lighten up a little. Is that a bad thing to hope for?
Our "firecracker," Jac, has autism, epilepsy, hypothyroidism, asthma and severe scoliosis. I was so hoping we would outgrow some of these ailments. Is that too much to ask for?
We live at the doctor's office with constant infections and I think we are their mascot. Some weeks I feel as if I see them more than my husband or my oldest son. Thank goodness those folks are like family and are incredibly supportive or it would make this much harder than it already is.
Living in Midland means we are what I refer to as " out in the sticks." We don't have a ton of pediatric specialists at all, so we must travel to Lubbock, Texas (which is 2 hours away) or Dallas, Texas (6 hours away). As luck would have it, Dallas will probably be our new home away from home as Jac is being referred to other specialists and possible upcoming Scoliosis surgery at Scottish Rite there.
Have our lives gotten easier as he has gotten older, like I hoped? NO!!! Every time we go in for a checkup, they find a new diagnosis. How can this be? I feel like I could be like Dr. Seuss and write a book about “How Can This Be?”
I don't like sickness, no I don't,
I will not give up, No, no I won't.
I want him well, I want it NOW,
I want him happy, but don't know how.
I am not a poet, but you get the idea.
The little things I have learned to make life a little easier in the meantime, keep everything organized, schedule our appointments either first thing in the morning or immediately after lunch to reduce all possible delays. And find time for yourself and your spouse. Receiving help from family members for a few hours at a time has been a saving grace because that allows us time for each other or just time to come home and decompress in a quiet environment for just a short while.
Sometimes the small things can add up to be big things and if those small things can prevent a doctor's appointment and more importantly, prevent an illness for my son, than I am all for it.
But through it all, Jac does know he is loved and you know what, that makes ALL the hard things melt away.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.