i've been struggling a bit lately. times are getting tough, and it's been a long 19 months of putting on a happy face on days i feel really low. i have been emailing a very supportive friend and this is part of what i had written to him.
"so, i'm not sure if i ever told you about justin's medical issues, and if i have, i'm not sure if you know what exactly they are. he has spina bifida - he had a hole in his back at birth. with spina bifida comes a few other medical issues... it's a real pain. he's got the obvious muscular/nerve issues. he cannot walk yet. he can crawl on all fours, he can pull himself up to stand, but we're still waiting for some cruising and then hopefully walking with a walker. spina bifida also causes a chiari ii malformation. basically, his brain is more in his neck than what yours or mine would be.. think of a funnel. the neck is the funnel. the brain is the liquid down in that tiny little stem. this malformation can cause balance issues, pressure on the brain, which can cause vision problems, and there are a ton of other things that can be related to this ridiculous malformation. then we have hydrocephalus - water on the brain. if not treated, it could cause brain damage and/or mental retardation. luckily, justin has a shunt (basically a catheter that drains the fluid off of his brain into his stomach), to prevent these issues. because of the surgery to close his back, his nerves were kinda screwy. most kids have bowel/urination problems. we have the urination problems. he can pee on his own, but we cath him to make sure he is emptying his bladder all the way. so far, we have no bowel issues, but potty training will be tough because he doesn't have much feeling down there, and we don't know if he'll be able to feel a poo or a pee coming. but, we'll deal with that when it's time for potty training. on top of these issues, there are some other issues, too. we have 3 days a week that we meet with a physical therapist for gross motor skills. every other week, we see an occupational therapist that works more on his finger skills, like feeding, threading beads onto a string, that kinda stuff (he is AWESOME when it comes to OT), and we have a speech therapist that we see weekly who works with him on his oral motor skills (he has some swallowing issues), low muscle tone in his mouth, and of course, he doesn't talk yet. he can say a few words - "dad, eat, this, that, and hat." only dad, eat, and that are consistent. he knows sign language. we're learning it too. he can sign "more, bubbles, milk, eat, drink, please, block, and ball."
i don't know what's the hardest part for me in all of that. it's a lot to take on. i know life could be a lot worse. and i know we could be much more unfortunate when it comes to his health. did you know they offered to terminate my pregnancy at 30 weeks when we found out he had it? if i had gone into labor the same day we found out, he would've been a preemie, but he could've lived on his own. this baffles me that they'd even offer that. i could never do it, regardless. i can't live with that guilt. but, every day i look at my little miracle, even with all of his struggles and difficulties and i cannot imagine my life without him.
when we found out about his spina bifida we googled... a terrible idea, but i came across a website (babycenter.com) and they had a board on there called spina bifida kids. basically, it's a bunch of moms that come there for support, questions, issues, bragging, whatever. and this website is my lifeline. recently, i feel like every baby but my baby is walking. my heart is breaking. not for justin, but for me. i want that SO bad. i feel so much guilt because i know i should just be happy with the things he CAN do. there are kids his age with SB that still can't sit up independently, that can't crawl, that can't pull to stand.. and justin doesn't know any different. he's going to work his body to the best of his ability and he doesn't know any different. he doesn't know he "should" be walking by now. he doesn't even realize it's an option, it seems.
i feel like my life, as of lately, has been nothing but "when will he walk?" i am tired of carrying him. he's almost 35 pounds. because he has low muscle tone, he can't even wrap his legs around me to help me when i carry him, so it's like carrying a 40 pound bag of sugar. every day. all day. i hate that i feel "tired" of holding him and carrying him and lifting him. and driving for him. and having his bitchy PT come to my house. i can't help it, but it's been a long 19 months and it's wearing me down in every aspect of my life. i feel SO MUCH GUILT because of his spina bifida. they say it's due to a lack of folic acid and/or genetics. while we have never had any genetics testing done, i can't help but feel guilty because i'm not as healthy as i was while i was pregnant with madi. i got fat (and of course that's hard enough on a woman), but being fat means i wasn't being healthy, which means i wasn't eating the proper foods that are high enough in folic acid. and i wasn't taking prenatal vitamins before getting pregnant. i feel like all the factors are because of me. but the point is, justin's got spina bifida. it doesn't matter. spina bifida doesn't go away. it's here to stay.
i can only make the most of this crappy situation, but it's hard. i have to look at every day as a blessing. like, i always should have, but now i have to or i will break. i am so thankful for my children and what they can do, but my god, it is the hardest job i've ever had. i am so lucky to know that i can even have kids. i have always wanted to be a mom and i would go crazy if i couldn't have kids. even after this, i still want at least one more. it will be awhile, but i know this is my "path" in life."
"I admit that when you first told me that Justin had SB, I didn't even know what it was. I had to ask. I was shocked; I suppose I knew such things happened, but I had never known anyone who had had to deal directly with them. I'm so sorry that this burden -- for lack of a better word, and which I do not in any way mean to imply that Justin is a burden -- has been put upon you. That's what dealing with something like this in real is: A burden. In a religious story, it's a test; In a movie, it's an obstacle to be overcome; in a spot on the evening news, it's a "human interest" story that makes viewers feel good by demonstrating "one family's struggle against the odds." But those are all narratives. And this is your life, not a story. You actually live this day to day. And I wish you didn't have to. I wish that you had the pleasure of caring for a healthy child, not because a healthy child is in any way "better" than one with SB, but because it would be easier on you. I'd like you to have an easy, joyful life. Instead, you'll have a tough life from which you'll have to wring whatever joy you can. I know you're up to that task. I just wish you didn't have to be.
I don't want you to blame yourself for Justin's condition. I know you will anyway. I know that, as a mom, as an awesome mom, you'll take that responsibility upon yourself. But it isn't your fault and it isn't Zac's, either. Maybe it was the folic acid. Maybe it was the genetics. Maybe it was God's will. It doesn't matter. What matters is that, when you're tired and cranky and you'd rather be taking a nap, you continue to carry your potato sack of a boy around. You demonstrate on a daily basis, through all of your actions, that Justin is by far better off with you than he would be with most other moms. He was fortunate to have been born to you.
When you're weary, you can lay your head on my shoulder, and I'll tell you how great you are, and after you've rested a bit, you can get back up and get on with being a mom again. A damned good one, too."
that is SO what i needed.
anyway, we had our first spina bifida clinic at AI Dupont last tuesday . we had been followed by CHOP since justin's birth and just had repeated horrible experiences there. we finally got to the point that justin was suffering from CHOP's crappy treatment, and we had to make the move.
first, we met with neurosurgery. justin had a swallow study done last month that showed he was aspirating on thin liquids (water, juice, some milk), so now we have to add a commercial thickener to his drinks. this helps with the aspirating, but of course, why is his swallowing not 100% is the question. so, we will have an MRI done to show us his spine and his brain to make sure there are no issues with his shunt and/or to rule out a decompression surgery to treat the chiari malformation. as much as i don't like the thought of him having ANY surgery, i'd rather treat these issues than see him suffer in other ways. so, we have an MRI scheduled for next wednesday and we will meet with neurosurgery after to discuss what they've found. hopefully nothing!
second, we met with rehab medicine. this doctor is like magic. the first day we met with her, we came home that night and justin began to crawl on all fours. today, she wanted to see him "stand" in his afo's, and he stood with the least amount of support he's ever had. it was like christmas or something. i was thrilled to see his determination to show the 3 doctors in the room that he's well on his way to conquering this disability. justin's left leg kinda turns out a bit, so we need to try to facilitate his leg/foot to come back to a straight position. there are a few medical options to treat it, and from what i understand, he may not need surgery. but, again, once the MRI is done, we will decide which treatment we will use to help his leg stay better in place.
and our last appointment of the day was with urology. this was my biggest stressor. justin has been cathed since birth. the frequency has fluctuated a bit, but at this point, zac and i are pros at getting the job done. my fear was that we'd have to increase the frequency rather than reduce it. even if we had to just continue what we were doing, that was fine, but judge is a squirmer and it's hard to hold a 19 month old down and cath him. i don't want to do it any more than i really have to. so we met with the doctor and of course, they didn't have his records from CHOP (they were still in another department), so we were telling him as much as we could with little medical knowledge of our own. finally, the nurse had located his paperwork and he saw that justin had NO REFLUX and NO PRESSURE in his bladder. this is GREAT. granted, it's a test from about 6 months ago, but he was so pleased with the results from his last study/ultrasound, that he said we could continue to cath him as we do (BUT LESS!), until he has a new study done at Dupont in about 4-6 weeks. what a relief that was.
it was a long day, but a good day. i hate the whole "wait and see" part of it, but that's been spina bifida all along. my entire pregnancy were no definite answers, because every case is different and just because he looked one way in my belly didn't mean he'd actually be that way once he was born. and now, we wait for the MRI results to see what our next step is. despite hating that we have to put him through all of this, CHOP never suggested any treatment. none at all, other than his basic SB related surgeries. they never did any baseline studies or suggested more therapies. they just suck compared to dupont. it's incredible, the difference between the two.