In the summer of 2001 , when Grace was diagnosed, the world was a little different than it is now. Home computers were large, heavy, slow and relatively expensive. There was no Facebook, Instagram, Youtube or Netflix! Gasp! How did people entertain themselves?? I had only had a cell phone for a couple of years and it was a big one with no features. I only had 4 children, my dad was still alive, and there had been no earth-shattering attack on the World Trade Center Twin Towers.
In our little family, our biggest concerns were paying the bills, getting a babysitter for the weekend so we could go somewhere, what was for dinner and how hot would it be tomorrow? We were also starting to be a little worried about Grace who was not meeting milestones, was starting to cry a lot when she had previously not done so, and was showing some signs that she might have vision problems.
I remember sitting in the genetics department at Baylor with my husband being given the unfathomable news that our daughter had a severe brain condition. The doctor was very kind but also told us that we could expect severe developmental delays, seizures, and a lifespan of two to three years. At that time, we had not had an MRI of her brain but she showed us a photo of what it would probably look like, smooth with no grooves. And later this was confirmed by MRI.
From that day, 2 – 3 years became like a deadline for us, a fearful age at which we expected to lose our daughter. I’ve talked to other parents and they live with this same feeling of impending grief. Grace’s seizures started not long after that and of course we were terrified, knowing nothing about epilepsy, seeing our baby girl jerking and turning blue and stopping breathing. We didn’t know then if seizures could kill her, actually they can, but usually they do not unless they last too long. We began a new life of taking care of our daughter’s health, talking to many doctors, worrying, praying, and trying to be good parents to our three boys. Early childhood therapists came to work with Grace at our home which was good, but also an intrusion into our routine. Finding a seizure medicine combination to control her frequent and very debilitating seizures was the highest priority.
Grace was 2 years old when we move to the country. When she reached her third birthday and did not immediately die, we rejoiced ! She made it! She’s still alive! She beat the odds! We were and are so thankful that she is still with us. Other children I’ve met in the years since diagnosis were not so lucky. Some have barely made it to one year, having more severe heart and lung conditions along with seizures. Others have made it 4, 5, 10 years. I’ve had to say the words “I’m so sorry for your loss.” over and over since Grace was born. It never gets easier saying goodbye to a friend’s child.
After Grace turned 12 or so, and we put her on a different seizure medication, her health seemed to stabilize and our hospital visits were much less frequent. We began to relax a bit. I started running and being able to leave her with other caregivers more often without worrying. One day I realized that the doctors were wrong. They based her prognosis on very limited information that was available at that time. Now, with better medical care, children like Grace are living longer! Not all of them, but many more than in the past. Some people might question whether this is a good thing. I think the parents know when it’s time to stop intervening.
Fast forward to yesterday! Grace is now an adult! 18 years old, with the developmental skills of an infant, but the beauty of an angel. She sometimes has the attitude of a teenager! I love it when she acts fussy like a normal girl. She has normal hormones like a regular young woman, so she will at times act grouchy and it cracks me up! She was happy yesterday, I think. She can’t talk, but she makes sounds and if you know her you can tell how she’s feeling.
I was feeling very depressed and anxious all week, but I was in such denial that I had no idea why. But finally God opened my eyes and I saw that I was feeling sad about her birthday, like I do every year, not because it’s her birthday, but because it’s so hard to celebrate with a non-verbal, tube fed child who cannot use her hands or express her wants. I was at a loss. But while driving to town to get birthday cake ingredients, I started thinking about gift ideas. At the store I looked at the comforters and sheets, thinking I might change up her bedroom decor. But she has a special bed and I don’t think the comforter would work well, so I just keep walking around. Then I thought I’d look at a Bluetooth speaker for her room, something to hook up an old iPhone to so she could listen to streaming music instead of radio music. Then LIGHTBULB moment! I will look at the tablets! A lot of people seem to have those for their special kids. So that is what I bought, just a cheap RCA one, but it works fine. My mood changed instantly! I had a gift for my daughter! I can’t tell you how happy this made me. I just had no idea how sad I was about this until the sadness was lifted. I am very thankful for God helping me with this and showing that He cares about even the small things.
I went home and made a delicious gluten free cake,a gluten free pasta alfredo dinner and celebrated my daughter’s 18th birthday with her and my family. To God be the glory!