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.
April 14, 2012
This past week you started preschool. A kid moved away a few weeks ago and a spot opened up in the 2 year old classroom in the preschool at our church. So now, Tuesday and Thursday mornings, you grab your shoes and your lunchbox (which you are in love with) and walk out the door with Dad. He'll strap you into the car, and off you go to work. Since the preschool is located in the church, Dad drops you off and then walks down the hall to his office. I'm left at home with your little brother from 9 AM til 12:45, when we leave to come pick you up.
It's a big step for you, this transition to school. It's one I wish we could have taken last fall, but you had to be potty trained before you could enroll. So, once we passed that milestone this winter, I was really looking forward to you getting to go next fall. When this spot opened up unexpectedly this spring, I rejoiced!
Now, your Dad admits that on the first day, he teared up a little on the drive in. However, while I feel like I should be whispering this confession-style, I'll admit that I didn't even think about shedding a tear. I know I should have been all choked up, thinking about you growing up and missing your presence throughout the morning. I mean, that's what "good Moms" do, right? I should have been clutching your baby blankets and sobbing in the corner, right?
Well, instead of sobbing, I was praying. All morning. For your teachers. Watching my phone to see if I'd get a call, for when they called to let me know they were going to expel you from preschool for hitting, or throwing things at people's heads, or jumping off the top of the playground equipment, or for having the mother of all temper tantrums.
As we round the bases halfway to your third birthday, my dear firstborn, you are just TOO much. Too much energy, too much will power, too much aggression. Don't get me wrong, you are still adorable, have the best belly laugh of any kid I've ever met, and have finally learned how to give a proper snuggle. But you are a lot to handle, my son. A LOT.
We have moved into this new phase of parenting where we are now having in-depth discussions and brainstorming sessions about how to handle you. We are pretty laid back parents and haven't, up to this point, particularly subscribed to any specific parenting method. We've kind of let you lead the way and learned to set boundaries as you discovered how to cross them. But lately, we've been at a loss as to how to handle you. We've both had days where we just look at one another and say, "I'm done."
You don't seem to mind any of the punishments we've tried. You are hitting constantly these days and we can't figure out how to make you stop. You laugh while you try to beat up the dog, or your little brother, or us. Even as I am typing this, you are randomly trying to kick me as I sit on the floor next to your brother. You seem to take delight in misbehaving and almost nothing seems to deter you from it. Your boundless energy just exhausts me and I'm constantly trying to find new ways to wear you out.
This past week has brought a lot of changes to our schedule, most of which I think are going to be beneficial to you. You have started speech therapy once a week and already I'm already hearing new words in among the jabbering. Mostly, you just love having someone who comes to the house to just see you, instead of your brother. We also went back to swim lessons, where you laughed almost the entire 30 minutes, even while you were under water. As with the Little Gym, I love an activity that makes you work hard physically and helps in my never ending quest to wear you out. So, your little world has gone from having very little structure, to having activities 5 days a week. While it's making my life a little bit more crazy, I think the more structure we give you, the better you will thrive.
So far, when I've gone to pick you up in the afternoons, your preschool is still standing and your teacher has been able to smile at me (...maybe because she knows it means she gets to hand you off for the day). She hasn't been phased by you yet, which makes me think you aren't so bad after all. Maybe all two year olds act like they are possessed. You are my only one, so you are all that I know.
Recently, someone felt compelled to tell me that they thought 4 year olds were worse than the "Terrible Twos. "After thinking about it for a second, I realized that when you are 4, Samuel will be 2.
I may need to taking up drinking that year.
I love you, sweet boy. (Even when you hit me.)
April 8, 2012
Sam slept through the entire thing.
Our Easter morning went off without a hitch, both boys were well behaved during church and cute in their matching outfits, the Easter Egg Hunt was a success, everyone (and I mean EVERYONE, hallejuah) got a good nap this afternoon, and Sam ate entire bowl of oatmeal for dinner in under 10 minutes and didn't push any of it back out (See here why that is an Easter Miracle all on it's own).
I'd say it was a pretty fantastic day. Hope you had as blessed an Easter as we did.
He is Risen, indeed!