Evan is five years old! I can hardly believe it’s been that long since the midwife cut the cord and handed a baby to my husband to hold and said, “And I believe he’s slightly Down’s.” Instantly alert, I finally really looked at the baby and saw a beautiful gorgeous baby! He looked like all my other babies, maybe cuter. I didn’t see Down’s, yet I knew it had to be true or she would have never said such a thing. The baby looked at me unconcerned about the diagnosis as if to say, “That’s no big deal.” And in that instant I became a better person. I fell hard in love with him and didn’t care what was wrong. I felt a compassion I didn’t know I had and I felt a need to do all I could to help him have a wonderful useful life and to make it as easy as I could for him. To quote someone else I heard once, “He touched a place in my heart I didn’t know was there.”
I nursed him and everything was pretty good till they were about to take him to the nursery 30-45 minutes later and they noticed a spot on his back as they took him. “Spina bifida,” they said. “Well at least his legs are moving. That’s good.”
You mean . . .?
“Yes they are sometimes paralyzed from that spot down.”
Oh my! Then they noticed a club foot. As I left the delivery room my thoughts were, “Why God, why three major birth defects? Wouldn’t one of them have been enough?” And it seemed a voice said to me, “My strength is made perfect in weakness,” and, “My grace is sufficient,” (from 2 Corinthians 12:9). It had to be God. I wasn’t thinking along those lines. I was barely thinking much at all. That gave me something to cling to though, and it gave me an attitude.
We then went to our room and heard what seemed like the worst news yet. They were doing a blood transfusion of artificial platelets. He had thick red blood cells, and they were transferring hime to Children’s Hospital!! When I said goodbye to him, I cried for the first time, and I cry every time I think about it. I felt like I might never see him again and felt like I was letting them take him into the cruel world by himself! That was about 3 a.m. and by 3 p.m. I was up at Children’s Hospital with him where I cried for the second time because he had an IV in his head and cords and wires all over him.
The pediatrician told me his chances were good and we wouldn’t know anything about cognitive abilities till he was four or so. That’s not really true though; I could tell those first couple months he was smart and had lots of personality and guts and determination and everything he needed to do whatever it was God wanted him to do.
He stayed two weeks while they tested and evaluated. They found three holes in his heart (an ASD, VSD, and a PDA) which is why he needed oxygen, but they thought he might not have to have heart surgery. He had back surgery at one month old and came home in five days. When we went to get the stitches removed, the back was infected and we stayed six long long weeks in the hospital. He had pneumonia, congestive heart failure, etc., etc., and very nearly died several times. I didn’t want to beg or bargain with God but I did keep telling Him, “I really want to keep this baby. I want him. I can tell he’s neat and I admire him already for being such a courageous, determined little fighter. I just want him. I don’t care what’s wrong with him.”
At one point the cardiology team told me, “We don’t know what we are doing and we wanted you to know we don’t know. He turned a corner during the night so we’re going to keep on doing what we’re doing in the hopes it is helping but we can’t look him up in any books and we don’t know what we’re doing.” I sure didn’t depend on them after that! I was glad for their honesty but I then knew it depended on Someone higher than them. Another incident—the nurse gave him 40 cc’s of lasix (a heart diuretic) accidently instead of 4.0 cc’s and it was then I realized I could not look out for him all the time—I mean I was in the room asleep when it happened! And I did have to sleep! After that, my thoughts were at peace with, “God if you want this child to live, they can’t kill him. No one can.” That’s the highlights. There’s lots more but suffice it to say he spent three months of his first six months in the hospital.
Oh yes—he had open heart surgery at five months old. He didn’t do real great and they kept him in an induced coma for 8 long long days. But even in that coma, he knew me when I came in the room and talked to him. He would start thrashing around and trying to open his eyes and they would see him and give him more meds to put him in a deeper coma. They even made me stay away all night and all day when they finally woke him up so they could do it ever so gradually. They said he got too excited with me around—and that was in a coma!! At five months old! Yes, he was smart.
He often would not settle down at night those first few months unless I was holding him or laying beside him and then he was asleep within minutes. He still will go to sleep in minutes if I lay him down beside me—when he’s tired that is.
And now, five years later—I can’t describe what joy he has brought—what sunshine. There is a little girl with Down syndrome with the very appropriate name of Kaya Sunshine. I think of Sunshine every time I see Evan’s big smile. We have been thru hundreds (maybe thousands) of appointments, made gobs of insurance calls, tons of paperwork, bills, eight surgeries, etc. etc. etc. but it’s been worth every second when we see Evan’s progress.
To see him walking all over has been absolutely one of the greatest joys in my life. They said he might never walk and when they tell you that and then he does walk, the feeling is indescribable.
I sometimes laugh during his OT, PT and ST therapies till my face hurts. It is so fun to watch Evan get his own way and do his own thing and outsmart them at times and tease them and just work his way into their hearts. He’s a favorite there. His health now blows me away. He’s hardly ever sick, and when he is he doesn’t get as sick as his siblings. What a change! Used to be when he got sick it was like we were visiting death’s door. In fact once a child died a couple of doors from us and I shivered that the death angel had been so close to us.
You know when I had my first baby 22 years ago I thought she was absolutely the most gorgeous wonderful great little bundle and wondered if I could love another when she so filled my heart. Then three years later we had another beautiful girl and I knew my heart was totally full of love. Then a couple years later we had a boy and I wasn’t sure about having boys ’cause I’d had four brothers but this little boy was different—he was perfect even for a boy, and then another boy, my big profound thinker and then another boy—my singer—has a beautiful voice and has been singing since he was born almost. I thought God couldn’t make em any better than what I already had and then came an absolutely beautiful girl with black curls! Yes, born with ‘em and me with straight fine thin hair and I thought this was tops. People called her Shirley Temple for a long time. And then God really topped it off next with bea-yoo-ti-ful identical twin girls. They are absolutely a delight. I took pride in the twin club statement that this is the only club where God chooses the members! I knew God couldn’t top that unless He sent triplets or something!
But He topped it all off. With Evan. Evan is the most special of them all. He has more personality and love of life and happiness and joy and determination and good attitude and guts and compassion and lots of other good qualities than any of my other kids and they’re all pretty good kids. He is just the absolute topping or icing on the cake! God couldn’t have done any better as far as I’m concerned. He’s the star of our family. The crowning star, and I tell the kids he’s liable to be king over them up in heaven. Who knows? And I want us all to meet in that little cafe up there if we don’t ever make it down here. (We have a little joke on the Einstein Down syndrome email list about us all getting together at a cafe somewhere and finally meeting each other. It sounds great, dosen’t it?)
Yes, there’s still some hard stuff to deal with. I make it a point to not know kids ages that are around Evan’s age. I don’t want to compare. The other kids reminded me that the twins are only 18 months older than Evan, a fact which I just don’t dwell on. But wouldn’t you know it, yesterday, on Evan’s fifth birthday, I was in line at the bread store and there was a little boy and his mom behind me. I guess the little boy was trying to show the cashier his age and his mom said, “He’s five years old today and he just can’t get used to putting that thumb up when he holds up his fingers for his age.” I took a quick glance at the boy, realized I didn’t want to see or hear another thing about him, hurriedly paid and got out! I didn’t want to compare that exact-same-age little boy with Evan. I tried not to think of how glad I had been that maybe Evan would be able to hold up five fingers pretty easily. I tried not to feel that twinge but it’s there.
Then there was the lady who saw Evan in a cast and wanted to know what happened and I told her he had been born with a club foot and she said, with much sympathy in her voice, “Oh that must have been really hard to take!” I wanted to say, “Lady if you only knew! That is the least of Evan’s problems.” But I didn’t. We just never appreciate health and the “normal” kids till we have a special kid. Makes us all better people I think. That is, if we’ll let it.
When Evan was born, my vision for him was that someday he would stand up and tell people, “I have Down Syndrome and Spina Bifida both but my life is worth living.” I plan to make sure he can make that statement and that he can show people how true it is. Until he can do that, I’ll do it for him.
Priscilla Kendrick is the mother of nine children, including Evan, five years old, born with Down Syndrome and Spina Bifida. Copyright Priscilla Kendrick, 2001.