Even though it has been over a month since I’ve updated this blog, I have continuously thought about it and tried to archive thoughts and experiences to discuss whenever I got around to it again. It almost seems kind of humorous that our lives have become so mundane that I have trouble finding things to post about. Many of you may think that raising a child with such “disabilities” must be chaotic and never-ending drama therefore the events must be ten fold. And, granted, this was the case for the past 2+ more years. But, I will still say that this life seems normal to me. It doesn’t seem out of the ordinary to discuss surgeries, adaptations, therapies, and such.
Well, maybe it does seem a little out of the ordinary now that Holden is here and I now know what it’s like to have a “normal” child (I hate saying that word: normal. It seems so derogatory to me.) Holden is so easygoing in every aspect of babyhood: never cries, eats well, no reflux or spitting up, no diaper rash, easily pleased, sleeps through the night, even puts himself back to sleep if he does wake in the night. I mean, really, he is the PERFECT baby to have after having Drew. Even as easy as I claim it is to raise Drew, I was a little worried about having another little one around with what it takes to care for Drew (during the surgery period anyway.) But with Holden’s easy and delightful disposition, it really hasn’t interfered much with Drew.
But, I am glad that I had Drew first. In fact, I’m glad that I had all of my babies in the order in which I did. Some of you may know that I had another boy in 2003, but he died, having never left the hospital, when he was almost six weeks old of a very severe heart defect and other complications from a chromosomal imbalance. Obviously, this wrecked my world and I honestly didn’t think I’d be able to go on. Following that terrible loss, I had two miscarriages. So, when Drew came around we were ecstatic and though it was difficult to get the news about Drew’s TAR in the 5th month of pregnancy, once he was born and we knew that he’d be OK, I was just so happy to have a baby to love and hold, to somewhat fulfill that motherly desire gained in my lost baby boy. I didn’t care that Drew had short arms. He is perfect in my eyes and my arms. It may have taken losing a son to truly appreciate and overcome such dire consequences which is my answer to why my earlier son and other lost babies were taken from me. Then, having Holden last, a baby with such a laid back disposition, with little complaints, was a relief!! In this order, I don’t have to silently complain, “this was much easier last time!” and instead I can revel in the thought, “This is so much easier than last time!”
But, I have found some challenges to having Drew and Holden. Ideally, Drew would be 100% self-reliant and independent. He would walk room to room, outside, hop in the truck, walk with me in the store, pull out his own toys, clean his room, take care of his bathroom needs, etc. But, as some of these things may come as he continues his therapy, right now he still relies on us for some things. The main complications occur with running errands and the old conundrum: leaving children in the vehicle. I can’t carry both kids and sometimes when the errands involves me, literally, running in and out of the building I don’t want to have to go through the effort of exiting the truck, removing the gait trainer, unfolding the gait trainer, removing Drew from the truck, strapping him in the gait trainer, guiding him to safe location while I remove Holden and then once my errands is complete I have to guide Drew to safe location while I replace Holden, unstrap Drew from gait trainer, replace him in truck, fold up gait trainer, load gait trainer into truck and then, finally, with heavy panting from the workout I leave. The loading and unloading of the two kids seriously take longer than my errand sometimes. But, it’s taboo to leave kids in the vehicle. But, I admit that at only specific circumstances, I will occasionally let the kids sit in the running truck. The truck must be within my view and in a safe location such as in a designated parking area (as opposed to, for instance, pulled off on the shoulder of a highway.) I always feel like a judged mom when I leave my kids in the truck so if I feel people are watching me, oftentimes I will bite the bullet and just take them both inside (of course, when Daddy is home, it’s much easier since he can keep the kid(s) while I run my errands and I try to plan for outings while Drew is at school otherwise, but a situation always presents itself at one point or another when I must face the truth.)
Then, it never fails that Drew only has to go to the bathroom when I’m nursing Holden. Sometimes, I think that the flow from my milk must subliminally trigger an urge to pee for Drew. It never fails that I must interrupt a perfectly content and successful breastfeeding session at least two times so I can take Drew to the bathroom. Poor Holden, too. He does not like interruptions of his meals. The sibling rivalry begins.
With all of that being said, Drew is continuing to progress in therapy and getting even stronger. He’s walking regularly now and even voluntarily walking with his left leg unlocked. This is a huge accomplishment for him as he has always preferred his left leg brace to be locked and any hint of unlocking it would always upset him. I’m not sure why the drama or attachment to his left leg, but it was a battle to determine who was more hard-headed whenever we or a therapist would recommend it. Perhaps it’s lingering fears of another break, or maybe pain, or maybe he just doesn’t like change. But, he finally started allowing his left leg unlocked, at his request at times and is doing well. He was doing squats at school, he loves obstacle courses complete with obstacles to step over and cones to weave around to perfect balance and turning. Even yesterday during therapy, he was trying to jump for the first time.
Physical therapy is exhausting for all of us (three-fold for Drew, of course) with the five days a week that we truckin’ out there and back after school. But, it’s rewarding when we get to see that his right leg is now bending to a 104 degree angle for the first time since the surgeries began (by comparison, 120 degrees is about the extent to which we bend our knees) and his left leg was measured at a 75 degree angle. It was very exciting to see how much each can bend, but especially his right since the 1-year anniversary of his femur break just passed. That day he got to “90….” something just before the femur fractured and the year following seemed to take so long to get back to the 90 after the correction and ensuing therapy. It was late last year that we even reached 90 something again.
Drew has his good days, more often than not, but at times Drew can be quite stubborn wanting to cheat on exercises or avoid them all-together with defiance and negotiating. But, Drew is quite the patient out there at the Methodist hospital therapy gym. He’s a frequent prankster and always the center of attention. Even Holden is a little star with all of the lovely ladies fighting to flirt with him. In fact, when Drew loudly announces that he has to go pee, meaning I must put Holden down in order to escort Drew to the bathroom, I swear I can hear all of the chairs suddenly jerk with the lunging of any nearby employee dying to cuddle with Holden in my absence. 🙂
Drew is doing so good in therapy and walking so well, that we are going to be retiring his gait trainer and get him a regular pediatric walker (click here to see a video). So, that’ll make things easier when debating whether or not I want to exert myself during my errands. We also ordered him a helmet, which would have come in handy during the times that he’s fallen though he hasn’t sustained any injuries yet, but it’s too big so hopefully he’ll grow into it soon.
I got a chance to hype therapy up when Drew asked for a big trampoline for Christmas. We visited Santa at Yager’s Studios and Drew asked for a big trampoline. I have to admit I was a little sad thinking back on the days before Drew’s surgeries and all of the time we spent out on that trampoline for hours a day jumping and bouncing. I found some old videos of Drew squealing with glee as we bounced and bounced and it brought a tear to my eye. There were days back then, when it was 100 degrees outside, that I was miserable and would just wish he’d tire himself out so we could return inside, but now, I’d almost give anything for just one more day to jump as we did before. So, when Drew asked for a big trampoline, it broke my heart to know that he was missing that too and in his current condition, jumping on a trampoline was out of the question. I had to capitalize on the opportunity to try to motivate him to work hard and play less in therapy and this letter “from Santa” is the result:
So far, I wouldn’t say that he seems more gung-ho than before unfortunately. I need some more ideas to try to reach our goals for graduating physical therapy faster!
Drew continues to do well in school. He now has a personal “assistant” I guess you can say who is specifically assigned to aid Drew with his needs that are too overwhelming for the teacher to address while simultaneously managing 20+ other kids. Drew needs help getting stuff in and out of his book bag, getting in and out of his school seat (though with enough effort, I bet he could do it by himself – I know he’s gotten out of his chair by himself per the surprised teacher. But, still, someone should be close by in case Drew loses his grip), manipulate his papers so he can reach, open his marks and boxes, open his lunch, go to the bathroom, etc….the list goes on and on. It was so much that prior to the assistant, Drew was constantly coming home with wet clothes and half-done work. But, now, Drew is able to do all of his work and keep up with his peers with his lovely assistance helping filling in.
Drew did have a momentary issue on the bus in which an unknown-to-me boy was verbally picking on Drew. It started off with Drew saying that this boy said that he [Drew] wasn’t funny which I assured Drew that 1) he is funny and 2) not everybody will think you’re funny and that’s ok. Drew kept mentioning this boy saying various things, basically neutral statements that weren’t necessarily mean but just better left unsaid and eventually Drew was saying that this boy was calling him stupid and ordering him around. We addressed the situation with the bus monitors and it has since been taken care of, but I’m just astounded that this became an issue. The bus is a special needs bus and I’ve been told that only special needs children are permitted to ride this bus so I’m thinking, “How can you pick on Drew? He’s on your team, man! That’s your comrade.” And, it made me want to just show this boy and every kid Drew encounters pictures of his surgeries and discuss in fine detail what Drew went through. Nobody could possibly look at Drew as being weak if they only knew what he’s been through. He’s had, like, 8-10 pounds of metal impaled in his skin, muscle and bone!! He had his chest cut open and his rib cage split-TWICE! He’s undergone exercise and stretches that made grown men cry and beg! You couldn’t possibly think that Drew is less of a person or a weakling after seeing all of that.
On a final note, Drew has begun questioning his arms. He asked about when my arms grew from short to long and asked when his would grow. I casually explained that I’ve always had long arms and his wouldn’t grow to be as long as ours. I did tell him that if he wants to, we can see about lengthening surgery on his arms if it was important to him. At first he said he liked the idea, but he changed his mind quickly. So, for right now, he’s OK with his arms and that is perfectly OK with me too. I have always loved his little arms and watching him gesture with his fingers and hands makes me so happy. It is so adorable when he tries to play rock, paper, scissors. I’ve made a point to instill the attitude of hard work and determination into him so he knows that he can do anything he wants to do. And, it seems to pay off. His therapist at school wrote the most awesome note in his agenda book detailing how Drew chanted, “I’ll never give up!” while walking and fighting exhaustion. 🙂