Drew has done phenomenal post-heart surgery. He hasn’t had any pain, little complaints and his incision has healed nicely leaving a slightly raised scar that I’m sure will fade more over time. He has proudly announced on multiple occasions how delighted he is that his “line” as he calls it is all healed up as well as the excitement that he only has ooooooone more surgery and he’s all done!
Hearing him go on about his excitement at the conclusion of all of his surgeries kind of makes me sad for him. His experiences are so extreme. He should have never had to go through so much pain and labor. He should have had it easy like his peers. As excited as we are about Drew’s new straight legs and as necessary as it was to go through it, I kind of feel like his childhood has been tainted. We lost a year and a half of normal memory making: visiting water and amusement parks, the playground, physical activities, and we were in Florida a mere 10 miles from the beach for pete’s sake and didn’t get to enjoy that. Even birthday parties were complicated trying to accommodate Drew into all of the activities. Now that Drew’s in school, while the other kids run to the playground, enjoy the slides and swings, and play dodgeball or basketball, Drew just whips around on his wheelchair on the outside. It pains me to see Drew on the sidelines watching and no doubt disappointed that he can’t join in on the fun.
Or, maybe Drew doesn’t think anything about it. Drew plays with our neighbors frequently and his favorite game is playing chase with the kids on their bikes. Drew follows them and races them around our driveway. Occasionally, when they are playing on the slip and slide or playing basketball, Drew watches and gives them instructions, encouragement, laughs at their comics. Drew doesn’t ever say to me how sad he may be about only watching. Maybe it’s just me that is sad? I’m sure Drew has to have some feeling about it. Hopefully, he understands that this is just temporary for him.
But, I’m starting to lose my confidence again. I know it’s only been a few months (not even), but truthfully, we are no closer to walking than we were in January. Drew’s had so many setbacks. It’s almost as if every time he starts to get ahead, he’s knocked back down. In January, he stood up for the first time ever and an hour later, it was gone with the snap of a bone. We lost all progress made and had to start over a month later. Then, just as we started to make some headway, it was time to remove a fixator and another month wait while he was confined to a spica cast. Again, we start to get into a routine and he has heart surgery. Now, we’ve had to remove standing and walking from his routine to avoid stress on his chest for six weeks. Drew’s just now gotten his right leg, the leg that experienced the fracture in January, back to where it was prior to the fracture. It’s been seven months and he’s right back where he started. His left leg seems to be slow-moving. It’s still sensitive from the fixator removal (seems to be taking a little longer than I expected.)
I look at Drew in his braces, which must remained locked at the knee at all times, and wonder how in the world he will walk in these braces. I’m not sure if he’ll be able to go from a sitting position to a standing position by himself. And, then, I just wonder if he’ll have the strength to walk. His legs look so weak right now. And, his surgeon has stated to me that his knees are likely to buckle thus the need for the braces. I know I’m saying this all so early in the process, but it is so frustrating not knowing what things are going to be like three months from now. Six months. Two years. Are we STILL going to be going though daily therapy? Will Drew EVER be 100%
I am struggling to recall how relieved I was when Drew walked in his gait trainer for the first time. I can’t remember that that “light at the end of the tunnel” was ever there. The fact is, I don’t want him to have to walk in a gait trainer forever and despite how happy we were at the time, it’s not a solution that I’ll be happy about permanently. Great, he can walk. But he can’t put himself in or take himself out of the gait trainer. He’s not able to reach anything due to the design of the gait trainer. He can’t enjoy a playground in it. Have my expectations been too high this whole time? Now, writing this all down, I wonder if all of the surgeries were even worth doing? If he can’t enjoy anything because of his lack of mobility, in fact he was able to more BEFORE the surgeries, then I will regret putting Drew through all of this.
I know what you are thinking. You are thinking that the surgeries are a great thing because he’ll be able to walk. Well, great. He’ll be able to walk. But will he enjoy life? Or will he be able to walk to the sidelines and simply watch everybody else go on as if nothing is wrong? It will tear me apart to see Drew defeated and especially to resent us for these surgeries. My goal in doing these surgeries was to give him opportunities he wouldn’t have otherwise had. But, now I’m not sure if we have or will achieve that. To think that we went through 14 months of living hell for nothing is too unbearable of a thought. I had to watch Drew experience some of the worst pain known to man. He would look at me, imploring me with his teary, frantic eyes and beg to stop. And, I’m not talking the “I just hurt my elbow” type of cry, I’m talking the begging for his life and I can’t take it anymore type of cry. In fact, he would tell me that (actually scream it): “I can’t take any more pain, Mom!! Please stop!! Why are you doing this to me?!?” It brings tears to my eyes even now thinking about having to go through all of that, not once but TWICE and THREE times a day during his adjustments, therapy and showers. He would hit our hands away and try to escape. There were days, when Nathan was at work, that I just couldn’t handle it. I would have to go outside by myself and I would uncontrollably cry. Just remembering our struggles during these trying times gets me upset even now.
Obviously, I should have not started a post while I’m in an anxious frame of mind. What can I say. I’ve never been the most patient person and I’ve just been waiting a very long time for things to turn around. As strong as everybody thinks that I am, obviously I am not. I’m embarrassed to have lost confidence. I’m sitting here questioning how strong Drew is and not bragging about how well he’s doing in therapy. He is getting stronger and he’s just as happy as I’ve ever seen him. He hardly complains. You’re probably thinking that I’m entitled to have bad days and get upset. But I say to that: well, here I am making this whole thing about me. (I’ve also always been my worst critic.)
Ok. Ready to change subjects now.
I’m so very excited for Drew going back to school. Starting school this year is twice the milestone it was when Drew started preschool since Drew has returned a completely different kid. Gone is that baby-ish looking boy hopping on his butt (*sniff sniff!) and in wheels the grown-up, tall Drew [who will soon walk.] (*proud beaming smile).
We visited the school for open house and I was nearly in tears the whole time hearing all of the kids’ cheers, “Drew’s back!!” So many kids rushed to Drew to say hi and talk to him, obviously missing him this whole time, and I was so happy for Drew who I knew, more than even me, was ready for things to get back to normal again.
Drew got to start school on time despite a momentary fear that he’d miss those critical first days due to his heart surgery. But, his surgeon said he’d be OK to start school on time. So, we’ve taken extra precautions to ensure his health and success. I’m giving him vast amount of vitamin C to boost his immunity, I obsessively wash his hands, and even had intentions of covering his chest with sterile gauze (but it actually healed completely scab-free before school started.) We visited the school and met with all of the major officials to discuss Drew’s needs regarding eating, bathroom, physical activities, etc. I gave them an orientation on the wheelchair and discussed some ideas how to help Drew in the classroom.
Drew loves school. I can’t tell you how excited I am throughout the day waiting to hear what he did as school that day. So far, he’s made a lot of friends though he can never seem to remember the names of half of them. I’ve learned a little bit about a behavior system they have in the classroom: a “clip” that is moved from green to yellow to orange to red depending on their behavior. Apparently, Drew went on yellow once which he sheepishly explained, “I was monkeying around too much.” Even though I should probably get on to him for misbehaving in the classroom, I couldn’t but giggle at remembering Drew’s shy smirk telling me about it. I’ll give him a pass this time!
And, you never believe how excited I am to see Drew’s schoolwork and homework assignments. It’s almost like, “Janel, you should get out more.” Drew has a list of words to learn to spell and read and I can’t wait to go over his homework each night. Now that Drew’s in school, I really do feel like one of those super-organized stay-at-home moms. I have a routine established that is so rigid that I’m anxious about it getting thrown off when Nathan comes home! And, the crazy thing is: I LOVE it. I’m so excited about it that I’m actually rearranging a few items in his room and getting my DIY thing on to create Drew a little study nook complete with an old school desk and bulletin board for displaying schoolwork, calendar, etc. Maybe it’s just because it’s still new, but I love all of the rushing around, the tasks at hand, the goals. You know, now I know what it is: it’s because it’s like having a job and I do miss working! Now, I have a defined set of tasks to complete instead of a series of random events to deal with. This is my day:
6:00 am: wake and feed Holden (if he didn’t wake prior to this already)
- 6:30 am: wake Drew and immediately serve Cheerios.
- 6:40 am: give medicines and brush teeth.
- 6:50 am: Dress Drew
- 7:10 am: wait for bus
- 7:15 am: load on bus
- 7:15-2:30 pm: me time!! (although I thought that I’d have more time to do fun stuff like drink margaritas, tan, paint my nails, Facebook (todays an exception)…but nobody warned me that this time isn’t still work time. I mean, seriously, how much laundry/dishes/dirt can one adult and two small children create?!? Not to mention I have to breastfeed 2-4 times before Drew gets home.)
- 2:40 pm: get Drew off of bus and RUSH to physical therapy.
- 3:00 pm-4:00 pm: Physical therapy
- 4:00 pm-6:00 pm: Anything Drew wants to do. (don’t forget to charge wheelchair!)
- 6:00 pm: dinner
- 6:30 pm: Homework
- 7:00 pm: Bath (put out clothes for school next day.)
- 8:00 pm: Bedtime including story
- 8:15 pm: Whew!!! I’m exhausted!
- 9:00 pm: Struggle to keep eyes open in order to catch up on all of my shows recorded on the DVR while feeding Holden.
- 10:00 pm: Janel, why do you punish yourself? Just go to bed! Just one more show!!
- 10:30 pm: Lights out!
- Rinse and repeat!
But I enjoy it. I like the routine. It makes the day go by faster. And, I feel like I got a lot accomplished. The best part of this schedule is this only leaves him two hours a day to watch TV. I always said that Drew would never be one of those kids that stays indoors and watch TV, but with the limitations of his fixator, it was kind of hard to avoid that. Sorry Supernanny!