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!
Awwwww, man! Paula, what a great post. I love this so much. So, so much. Happy 18th birthday to your beautiful girl, who has such a lovely name.
Here’s to you, Grace!
❤️ have a great weekend!
Happy Birthday to your daughter!🎈🎁God bless you all!
Thank you, Ryan! God bless you!
Happy, happy, happy birthday Grace. You inspire me, my friend. May the Lord be with you, y friend
Praying for many, many breakthroughs to come, PK!
Happy Birthday Grace! 🙂 God Bless you all!
Thank you ! How are you doing?
Doing well, thank you 🙂 I am working on a post, but you know, life 😉 God Bless!!
Glad to hear it!
Happy Birthday Grace!!! Technology will be entertaining and helpful! Thank you for the reminder to love!
❤ Thank you!
God does help us bear our burdens, albeit sometimes in ways we don’t expect Him to do. When I was born with lactose intolerance, it should have been a warning that there was something seriously wrong, but that was back in the 1950s, when they didn’t know as much as they do now. All my life I’ve been afflicted with a growing number of disorders, which my mother found very difficult to bear, because she lost her faith early. Your trust in God is an example to all parents.
Doctors knew even less back then they do now about metabolic disorders. I hope you have been able to find some help for yourself. While I am thankful for doctors and modern medicine, I also get very frustrated with it. God has been so good to me to lead me to various solutions to my various issues. Thanks for sharing. I see that you are/were a homeschooling mom. Nice to meet you!
Nice to meet you, too!
I’m quite disabled, now, and still fighting to get the care I need, because even at my advanced age, new autoimmune disorders keep cropping up. I’m pretty sure I inherited the problem from my mother’s side, but someday I’ll have a DNA test done, so I can find out which genes are responsible. That also interests me because I’m a retired RN.
Yes, the homeschooling years with my three younger children were the best work I ever did in my life. I thought it ended when I graduated the last one from high school, but then two of them decided to go to college, so it turned out I wasn’t quite “retired” yet! 😉 One son earned two Associate degrees simultaneously at the community college, then went on to university to earn a Bachelor’s, and finally a Master’s (he has a mid-level job in banking). The other son earned a Technical certificate at the community college (he’s a Chef), and then transferred to university, where he earned a Bachelor’s (now and then he wonders if he’s ready to go back for a Master’s, but he’s still very busy building his career in hospitality management, working in long-term care).
I hope you have the time to start writing the creative stories you have inside. Have you found Ali Isaac here at WordPress? One of her children is a severely disabled daughter, but Ali has found ways to finish writing several books, and to collaborate on another. https://aliisaacstoryteller.com/category/life-with-a-special-needs-child/
Does your condition have a name or is it a non-specific AI disease? I have not found Ali, but I will click now. Thank you! Your children sound wonderful. 🙂
I have 3 diagnosed AI diseases (Hashimoto’s thyroiditis, pernicious anemia, autoimmune inner ear disease), and may have at least 3 others for which I have symptoms, but haven’t been worked up for, yet. I was treated for thyroid disease when I was a child, and my growth was stunted because of it. I probably had developed pernicious anemia by the time I was a teen, but it wasn’t diagnosed until it had nearly killed me, when I was 60. The inner ear disease was diagnosed about a year ago. AI diseases like to run in herds. I’ve had cancer, too, which is not autoimmune (as far as anybody knows, now), but I figure my immune system was so busy throwing rocks at its neighbors, it didn’t notice the tumor that was forming.
Good for you for keeping on . My best friend has Hashis and Fibro . I feel for you both . ❤️