April 19, 2012

The Land of What-Ifs

Yesterday was one of those days where I questioned whether I had any idea at all what it meant to take care of a special needs child. Specifically, a special medical needs child.

Since our little bout with pneumonia and metapneumovirus that landed us in the hospital for a week, Sam has been very healthy. His small amount of constant congestion had disappeared and he was kicking butt in both physical and feeding therapies. He's been working on sitting by himself for whole minutes at a time now and even did his first complete barrel roll this past week. He has continued to have good days with feeding and has eaten entire bowls of cereal without most of it ending up on his bib. Progress, people. We've been making real, honest-to-goodness progress.

We are still limiting Samuel's exposure to the outside world to just a few trips out of the house a week. Mainly, we hit church on Sunday mornings and we just started taking him to swim class. I try to keep people from touching him at church, although I admit that I always feel funny asking people not to. I see them reaching for him and just I want to scream: "Your little squeeze of his foot (or hand or cheek) could land him in the hospital again!" But mostly, I just smile, cuddle him close so there isn't much exposed and then wipe him down with anti-bacterial gel once we get in the car seat. I know it's okay to tell people hands off...but I think maybe my Southern upbringing has made me feel like I don't have that right. But I do. I know it. I just need to empower myself to do it! So, you've been warned! Hands off, people!

Anyway, that was a nice tangent. Moving on.

Yesterday morning, Sam got up about an hour earlier than normal. Travis feed him a bottle and then he went back down. About 15 minutes before we had to leave for swim class, he woke up again ready for the day. He was happy as I changed his diaper and clothes, and while he refused his bottle, he seemed perfectly content....And the appropriate temperature.

30 minutes later, when I pulled him out of the stroller at the swim school, he felt warm to me. However, that's not unusual after spending that much time in his car seat. He had fallen asleep while we traveled, so I chalked his sleepy cuddles up to that and got him dressed for class. It wasn't until we'd been in the water for about 10 minutes that I realized he wasn't cooling down. He wouldn't pick his head up off my shoulder and seemed utterly miserable. Since this behavior was eerily similar to how he acted the day before we landed in the hospital last time, I immediately hopped out of class, warmed him up in the shower, and got him dry. His color improved and he fell asleep while it was Luke's turn in class.

The whole time I was swimming with Luke, I just knew I had made a bad call in making Sam go to class when he was acting clingy. I spent a good hour hating myself for the 10 minutes it took for me to take it seriously that something was wrong. I got out of the water with Luke as soon as class was over, determined to get them home quickly. After Sam coughed up some yucky looking stuff on our babysitter, I was officially worried. I was on the phone with the pediatrician before I even left the parking lot. By the time I got him home and was able to check his temperature, it had reached 103.8. I spent another couple of hours hating myself after that, too.

I was completely baffled. And worried. So worried. The hour I waited for our appointment with the doctor and for his Tylenol to kick in was a long one. He honestly had been fine up until that car ride into Charlotte. He seemed to have a little bit of a stuffy nose, but hadn't been coughing or wheezing and hadn't needed a breathing treatment since we left the hospital. Until the fever popped up, everything was completely normal.

Sam and I spent a good 5 hours in the doctor's office while they ran every test I think they could. They drew blood twice and spent forever trying to get him to pee for a urine sample. They sent us out to get a chest x-ray to see if the pneumonia was back. And while the pediatrician thought he saw something on the x-ray, the official radiology report disagreed and said he was fine. We haven't heard back about the other cultures, but the quick screening of his urine showed some infection. We got him started on antibiotics, and beyond the scary high fevers, he's been fine the last 24 hours.

It's so hard to know how to feel about this kind of stuff. On the one hand, all kids get sick. Luke's had a high fever before and we survived that just fine. On the other hand, Luke's had one ear infection in his entire life and never been to the doctor for anything else but well check ups. He didn't have to have two heart surgeries, a pacemaker, a week in the hospital for pneumonia, and a genetic disorder that can continue to throw us medical curve balls for the rest of his life.

Just re-reading that last sentence makes my heart ache and my eyes fill up with tears.

I know I spent a good deal of March talking about Down Syndrome and what it has brought to our lives, good and bad. But, I don't think I ever really fully expressed this gut-wrenching pain that it can cause. How the medical issues that we've already faced and the potential ones that lie ahead are just so overwhelming some times. While there are all sorts of statistics about the medical issues that people with DS commonly encounter, there isn't a single one they can tell me for certain. No two people with DS are the same. That extra chromosome affects them all in different ways and to different degrees. It is so incredibly frustrating and so damn unfair. If you could just take all that data and tell me for sure what to expect, I think it would be easier to deal with little things like unexplained fevers without spiraling off untethered into the Land of What-Ifs.

Sam is sleeping peacefully with a full belly, easy breathing, and a dose of Tylenol on board that's giving him a cool forehead. He's not hooked up to any monitors or oxygen and all my boys are under the same roof tonight. Antibiotics are coursing through his little system, hopefully kicking butts and taking names.

It's just one of those nights where I am completely humbled before God, asking for the courage and the stamina to be this little boy's Momma. He deserves the best.


  1. And he's got the best! You and Travis rock!

  2. Oh, Victoria. I can SO relate to this. The fear and the what-ifs. The difficulty telling people they have to treat your child with extra caution that you know is necessary, but fear they won't understand. The comparisons between healthy child and special needs child. The guilt every time they end up in the ER or the Dr.'s office because of something you feel you were supposed to be able to prevent. Check, check, check, double check. Just keep doing what you're doing and it will get easier. The guilt will probably never go away, but that's just part of being a Mom, I think.

    Check out the section at the bottom of this blog. It was my first blog ever and I talked about fear and guilt. I think you will find it all too familiar.

  3. You have educated me and so many other people on the complications of DS. Your honesty is so refreshing, especially when describing the way you and Travis deal with the emotional roller coaster of raising a special needs child. We all have many purposes for being on this Earth and many of us spend our entire lives wondering what those purposes are. One of your most important purposes is to be the mother to this precious boy. I know that your time is so very limited but if you haven't already read it, find a copy of The Memory Keeper's Daughter by Kim Edwards. It's one of the best books on DS I've ever read. Never doubt yourself. You're wonderful. -- Jan Morrow

  4. You are an AMAZING woman and an AMAZING mommy!!! Don't you ever doubt yourself. God will give you all the answers you need to take care of that precious baby that HE gave you. You are doing a wonerful job!! I am the same way about people touching my little boy and he is healthy, so I know I would act much worse about the situation if he were sick often. I will be praying for you and your family. Keep your head up!! You are an awesome mom!!--Mandy