A fellow mom at therapy whose daughter is diagnosed with Angelman’s syndrome once said, “The things that used to matter just don’t anymore.” That one line in the midst of our conversation just stuck with me. “The things that used to matter just don’t anymore.” Of course I am not as far along in the process as she is because her daughter is going on eight years old and Abigail is only two but already in these two years I have seen differences in myself because of Abigail.
The biggest thing I have noticed is that I have found my voice. I have always been opinionated and stubborn but I am also very quiet and reserved, so while I have lots of opinions and comments I would never voice them. But with having Abigail (and being married for three years to a man who is also opinionated) has helped me step out of my bubble a lot! I have learned to have a voice. With a child who sees as many doctors, specialists and therapists as Abigail does you have to be adamant along the way about what your child does or does not need.
I have had many phone conversations while setting up appointments and confirming Abigail’s test results where I have to be firm with the person on the other end of the line. It can get so frustrating trying to connect so many doctors together, making one appointment after another, or dealing with insurance companies. Just this week I have been in the phone multiple times making phone calls to many people in the genetics lab trying to find out what is going on with Abigail’s testing. But the line I use so often is, ‘the squeaky wheel is the one that gets fixed.’ It is a headache and I hate being rude, but we have learned that if you do not keep on top of things you get lost in the system quickly. You have to make yourself known to get what you need done and I am learning to be braver and make sure we get what we need.
Things that used to matter just do not anymore. I see this is true as I know our life is different than most. I deal with things that should be simple but having a baby who does not move makes life more interesting sometimes. To go to the library just to drop off books and get new ones is a workout. We went the other day in the pouring rain (not sure what I was thinking). But I had to run around get the umbrella, get out the stroller and try to keep it dry all while getting Abigail out of her car seat. Then I had to buckle her into the stroller, grab the books and make a mad dash into the library all while trying to keep us all dry. It was a sight I am sure, but life for us. My favorite is when we go to a new doctor or we have a different nurse and they ask me to stand Abigail on the scale to get her weight. I just start nodding my head and say that will not work. They seem so confused, but thankfully right now we just use the baby scale. It is just the tiny things that make life a little different for us. We cannot do things the same ways a normal family with a toddler could.
It makes me wonder what things in life will not matter, or what will be our normal as Abigail grows and gets bigger. Will we be stared at from across the restaurant because of our daughter in her wheelchair, or the ten year old who cannot feed herself? What questions will people ask us as we are out and about with our family? What matters to me right now, and will those things matter five years from now? As a parent of a child with special needs you learn a new normal to life. Any other children we may have in the future will be brought into our normal. I want all my children to know what really matters in this world. It is not how popular you are, how much money sits in a bank, or how you compare to the people down the road. What matters, and what will always matter, is what is eternal. The things of this world will fade. But your relationship with God and how you choose to live for Him will be eternal. I want my children to be servants who love God and love people. I want them to have fun and be innocent as long as possible. I want them to respect others and find joy in the small things. Oh, there are so many dreams for my children, but I want them to understand no matter what our normal may be they are loved, not only by Mommy and Daddy, but by God, their Father. What things do you want to matter to your children as they grow older?