A part of it

Before even becoming pregnant with baby #4, I had visions of my kids playing all together. Running, playing ball, laughing, all that good stuff. I have two girls and two boys. I found out G was a boy the same day I found out he was going to have spina bifida. No, wait, I actually found out he was a boy when we were told he had no chance to live. The next day we found out it was just spina bifida when we saw the perinatologist.

Those dreams of siblings and brothers seemed to crash around me. My overloaded, worrying brain couldn't conjure up happy images. I saw a little boy in a wheelchair watching from the sidelines, left out and unable to do anything. Fortunately, this dismal picture was so far from the truth. The reality.

I had such a narrow view of what disabilities really, truly entail. Oh, yes, my dream is still different than it was when I became pregnant, but it's not doom and gloom. I have a new understanding of what disabled means, how it works.

G is such a part of our family. I remember when I had a difficult time imagining what life was going to be like with him, and now I can't imagine life without him. He fits in so perfectly. He's that fourth child I dreamed about, but an even better reality.

Musings on doctors

I've been attempting to write a post for several days now, but with four kids at home I have CONSTANT interruptions and lose my train of thought. I compose coherent essays while going to sleep at night, but when I sit down to write them during time at the computer, things sound fragmented.

I have several posts mulling in my head about doctors, challenges, perceptions, accomplishments, you know, things like that.

I will attempt to post something today despite the interruptions that frequently occur.

For us, since G was born, we have encountered quite a few doctors. Even before G was born, I guess. Once we found out about the spina bifida, we were sent to a group of perinatologists, and they thought it was brilliant if you saw each and every one of them. I hated that. How do you get comfortable with who is attending your birth? You don't. You don't know who will be there, and they think if you meet each of their doctor's at least once, somehow they'll remember you at your birth. Or you'll be more comfortable since you met this doctor. Or something. It's beside the point, really. My intention for this isn't about that.

At each visit, I had a lot of questions, and I wrote them down in this small notebook I purchased. I referred to it as my Brain because it contained names, addresses, pertinent questions, important answers, and it did the work for me to remember everything I couldn't at that time. Once G was born, I continued using this notebook and bought a new one in January. It's been invaluable.

One of the main questions I had at this time was "What can I expect?" Initially, when we were given a diagnosis, it wasn't correct. It was believed he would die due to his brain malformation. When we saw the perinatologist after an agonizing ultrasound, he said, "Oh no, it's just spina bifida." We were given a pamphlet and some other reading material, and we went home with our minds swirling. I read the handouts, I read stories online, and heard some stories from others about someone they knew with spina bifida.

What I wanted to know, though, what can I expect from this baby, my baby? What will he be able to do? How long will he live? Will he be able to walk? What about his bladder and bowels? What about the shunt? Will he be brain-damaged? How much? Will I be able to breastfeed? What is he going to be like? Will he look funny? Scary? I mostly focused on the birth plan after awhile because contemplating these questions and the possible answers were tough to deal with.

I remember we spoke to the neonatologist before G was born, and the answers he gave were vague and didn't really answer much. Basically, it came down to each baby with spina bifida is individual. The severity is different for each one. My baby's lesion was lumbar 4ish, and it was probable he'd walk, but it wasn't promised. He could have severe hydro and be mentally handicapped, or he could not have hydro at all. The range is wide for spina bifida babies.

It was tough to accept that we wouldn't have definite answers, but I decided I had to. After he was born, the doctors we've seen, the neurosurgeon, urologist, orthopedic, haven't given us false hope. They haven't given us devastation either. They've presented us with information and caring, of which I'm much appreciative. They haven't once said, "Oh, he won't be able to do this or do that." or "He'll have nothing wrong! He'll be able to walk!" They've told us clearly, They Don't Know.

In some ways, it was hard to accept this answer of I Don't Know, but as time has gone on, it's been okay. They were right. They don't know what my son will or won't be able to do. They have an idea, I'm sure, but as one told us, he didn't offer that kind of speculation anymore because he's been proven wrong more than once. I appreciate that. There's the knowledge of what he can potentially do/cannot do in regards to his lesion level, but nobody's stuck him in that box.

I feel that we've had very positive experiences with G's doctors so far, and I'm very thankful. This isn't to say we haven't had negative experiences because we have, but his main team has been excellent.

Comments

It's been very hot and muggy here recently. I thrive in it, but G is on medication that inhibits his ability to sweat and puts him in danger of overheating, so to speak. He flushes up even when it's not this hot.



On Thursday, my mom, sister, nephew, G and I went to town. We ended up going to a few garage sales, but sis and I didn't feel like taking the toddlers in and out of their carseats, so we chatted in the car. Afterward, we went to a bakery to get cookies (can I say YUMMY?? I'm all about making my own, but these were delicious), and as we walk in the clerk commented on my G's "sunburn." I didn't correct him that he was flushed, but he went on about it a little.



We ordered our cookies, and he brought it up again, saying something about keeping little ones out of the sun. I made a comment about him being flushed by the heat, but I didn't feel like an explanation was necessary at this point. While we were paying and saying goodbye, he said, "Keep the little one out of the sun!"



I finally said, "He doesn't have sunburn. He's on medication that causes him to flush."



"Oh."

I'm not sure what's the correct thing to do in these circumstances. Sometimes I feel like I overshare and sometimes I don't feel like giving all the information. The clerk wasn't rude, and I appreciate his concern.

He's not Spina Bifida

In one of my groups, we had a new parent join, and another parent gave her the advice that this isn't spina bifida you are expecting, it's a baby. She told her to enjoy the pregnancy and focus on the fact she has a baby coming.

I remember receiving that advice myself not too long ago. Well, almost two years ago! At the time, I yelled at the monitor, "HOW???", but it was the best piece of advice I received. At first, I was consumed with finding out information, uncertainties, concerns, all that good stuff when you get a diagnosis such as it's "just spina bifida."

But then it shifted. I decided to enjoy the pregnancy, I decided to embrace the baby, and come what may. Sure, each doctor's appointment brought issues to the forefront, but I resolved to have my moment and move forward.

I did have a good pregnancy. I was pregnant in the summer, he wasn't due until the end of September, and I loved it. I loved the clothes I was able to wear (sooooooo cute), I loved that I wasn't itchy (winter pregnancy gave me dry skin), and despite being diagnosed with gestational diabetes, I felt great.

When we were given the diagnosis that he had spina bifida at around 24-25 weeks, I hadn't felt him move much. He started going crazy then. At first, I was upset. It was bittersweet, but it eventually became reassuring.

When people would ask the normal pregnancy questions, it was difficult to not answer, "My baby has spina bifida." There was this sense of that was what he was, if that makes sense. He became different with that diagnosis, and I had to work past it. Even when he was a newborn, I still associated him with spina bifida. He's not spina bifida, though, he's a baby, a toddler, a person. I think he'll get this tag a lot as he gets older. He'll be "that kid with spina bifida", but to his mother, he'll be her son.

Getting around

This isn't his most efficient way of getting places, but he likes to use it when he welcomes daddy home or he just has a short distance to go. Those little power arms are so wonderful to see again. After his surgeries in January and February, his arms looked so frail.

I also am so happy with his feet. We've gone through a lot of casting for those feet, and I'm so pleased they are looking so good. When he came out of his casts after all his shunt surgeries, his legs looked so limp and his feet so floppy. They seemed to want to immediately turn back in. Once he regained his strength and then starting bearing some weight, I've noticed a big difference.

I'll be so pleased and happy if he walks, but if he doesn't I don't think I'll be disappointed. One doctor made the comment that if you can't walk, you can still run a boardroom, and that's really stuck with me. I'll do my best to support G on his journey. If he walks, I will be thrilled. If he wheels, I'll be thrilled.

So many people put such an emphasis on his walking, and it's kind of weird to me that it's such a big deal to them. I've said many times the likelihood that he'll probably do both walking/wheeling is very high, but they are so dismissive of the wheeling aspect. I don't think they understand how weak his legs are and how much effort he has to put into using them.

I really think he probably will walk. And that's a great thing. I think, though, that he'll also use a wheelchair. That doesn't make me faithless. It doesn't make me a pessimist. It doesn't even make me a realist. I'm not accepting a negative reality because, really, what's so wrong with him having to use a wheelchair? I'll encourage the kid as much as I can. But I sense, I feel, this judgment when I say he'll probably do both. As if I'm somehow giving him limitations. I honestly believe he'll be limited if my focus is on just getting him to walk.

Shoes

There were so many things I looked forward to with my last baby. I couldn't wait to buy him/her baby shoes. With my older kids I hadn't heard about Robeez or Bobux, and I couldn't wait to purchase some. I looked forward to enjoying and relishing so many different things. Homebirth, slings, being that ultra-relaxed fourth time mom and enjoying every minute with my last baby.

I don't mourn often the things that changed when we received his diagnosis, but the shoes are the one that cuts the most for some reason. My nephew was born the same time as G, and he has some of the cutest shoes ever. I missed out on shoes with my oldest, who also had clubfoot. At least, when she turned a year, her shoes could go straight on her feet. With G, we're always having to figure something out that will go over the AFOs. The robeez did fit at one point, but they don't anymore.

It's one of those things. Just one of those tiny losses that cut deeper than they should.

My sister has helped find some cool footwear for my kid, and I love them (and her), but I would so love to just buy the shoes I want to.

So many people comment on the cuteness of the AFOs, but I have a hard time with the appearance sometimes. We've gotten the buses and trucks, or whatever the design is, but they mostly seem awkward and hot-looking to me. I don't mind them in the winter, but in the summer I want to leave them off and let his toes be bare. He needs the AFOs for stability and maintaining correction for his clubfeet. I don't want to lose that correction (we went through 21 casts, two tenotomies, and 7 hour trips one way for the last five), and I don't want him to fracture his leg again. So, they aren't optional.

I miss bare toes, I miss cute socks, I miss adorable shoes. It's just one of the little things that seems big sometimes.

One day at a time

When G was born my sisters both had babies. My niece turned two yesterday, and my nephew is 11 days older than G. I also have two cousins who had babies, one in July before G was born and one in January after he was born.

There's a large group of kids the same age. And here's my little boy. Everybody says how good he is doing and how good he looks, and it's true. He's pretty amazing.

But what he's starting to do, they've all been doing for a long time. What is so wonderful to me, is these parents. They share in my excitement of his achievements. He's 19 months old, and he's just learned to stand. All of their toddlers are running around, but they are SO excited to see him achieve something that came with ease to their little ones. That means a lot to me.

I'm thankful he's my last baby rather than my first. I find I'm pretty relaxed, and I'm actually happy he's kinda staying a "baby". He's definitely a toddler in attitude, but he doesn't get into near as much stuff as my nephew. LOL But it also saddens me. That little ache in my heart when I see my nephew trying to get G to stand up. Or seeing these other little toddlers running while my toddler looks longingly after them. He can't crawl fast enough to keep up. My heart hurts when his little fingers get stepped on or he hurts his hand on something sharp on the ground.

Recently, a few other people I know have had babies that are very early (around 25 weeks gestation). I feel so deeply for them. For the struggles they are facing, for the fears they are facing, for the realities they are facing, for the future they are worrying about, and for all those things that hit you when you bring a child into the world. It's hard enough worrying about a "normal" child, but when you have one with challenges you don't know what to think. You hear "Take one day at a time..." an awful lot, and it is truly one of the best pieces of advice to recieve, but to actually put into practice... Easier said than done.

Before G was born, and we found out he had spina bifida, hydrocephalus, bilateral clubfeet, and he would have bowel/bladder issues, the future seemed to collapse. It was impossible to not feel like my entire future was changed. It was hard to not think about those changes and how my life would forever be affected. It was a Big Deal. I thought and felt ways I never imagined I'd feel. I wished things that now make me sad. But it all had to be done. It was part of a process. It was grief over losing my future that I envisioned. It was grief as expectations were pronounced dead. It was grief as dreams were lost. And then that process shifted. Perspective changed. Acceptance, dealing with it, joy returned.

One day at a time. It is valuable advice. Sometimes, though, it's impossible to do. Sometimes it's the only thing that'll get you from one day to the next.

I do now take one day at a time. I worry about G's future now and then, but it's not an overwhelming worry. When we're going through a crisis, the only way I can survive without dissolving into a helpless mass of tears is to resolutely take it One Day at a Time. Sometimes it is one hour at a time. If I look too far ahead, if I allow those fears and worries to creep in, I become overwhelmed and incapable of facing the situation.

As he's gotten older, as we've faced some major, scary surgeries, and made it through, the future doesn't seem so frightening. I made it through some heavy stuff, and I can do it again.

Shunt revisions

Tomorrow it will be a year ago that G had his second shunt revision. I've been working out in the garden the last couple days, and I was wondering why it kept popping into my thoughts. A year ago I was feeling so hopeful with promise and thoughts of getting gardening done. Life felt good. And concerns started creeping in. I ended up going in on a Friday with him and spending the weekend. His revision was on Monday, and we took him home on Wednesday. It seems so weird that it was only a year ago.

Thankfully, this year I don't feel as if anything shunt related is going on. Well, I still worry, and I check the signs, but he seems okay. His burr hole "soft spot" has been fuller but not tense.

It took a lot out of me, and I ended up not doing any gardening when I got home. I think I did a few annuals around the yard, but I didn't do anything special.

There is such a love/hate relationship with that thing. I love it because it's the reason he's still alive, but I hate it because of its frailty. Not even frailty really, but it is flawed. Shunts are as dependent on the person in some sense as the person is on them. G has had 7 operations on his brain, and he's not even two years old. It really freaks me out sometimes!! Most of the time, though, we go on our merry way. :) His shunt failures/malfunctions have occured due to tissue blockage and the gel incident.

Well, I am going to try and not worry about the shunt this week. It'll probably me more on my mind, though, I think.

Gone and home again

One of the things about a hospital stay is life goes on for other people, but it halts and shifts for me. I come home, my house is still the way I left it, my kids are missing me, and life resumes, but I'm behind. I've missed something. I feel so alienated after a hospital stay.

G was in the hospital Monday and Tuesday night. He is still not himself, and today I'm getting worried. Monday he had these diarrhea diapers that were just water, and he had about 6 of them on the way home. I was cloth diapering, and it went surprisingly well and smoothly, but I can't say it was the most ideal circumstances in a five hour car trip with four kids. Fortunately, they didn't stink, the diapers that is. We got home, and he had two more diapers full, and then he vomited all over me. Oh joy. So, then I went into "I think we have to call about this" mode, cleaned up the floor, took my clothes off, put on some fresh clothes, helped get the kids ready for bed, as G laid on the couch without moving. He looked lifeless, and I was really worried he was dehydrating fast.

After we got the other three kids to bed, hubby and I took G to our the ER. MIL stayed with the sleeping beauties. Long story short, G got an IV, some blood draws, and an overnight stay. The next day, he seemed to be doing better until the afternoon, and then he became lethargic, hard to waken, and he had a low-grade fever. We stayed another night, with another dose of antibiotics, and Wednesday we took him to Children's for a CT and to see the neurosurgeon. It looked good, so we left very relieved.

The diarrhea has continued, though, and yesterday and today, he just passes out. Today, he was sitting in the high chair, and fell asleep. I know this happens with kids after a long day, but it isn't sitting right with me. So, worry, worry. And, OF COURSE, it's the weekend!! It's always the weekend. I remember the days when I used to think TGIF, and now I'm praying we make it through the weekend.

Coming out of the hospital, and getting back to Life is just a surreal experience.

What exactly?

I've had a struggle figuring out what I want this blog to be about. I have so many "things" to write about, so then I choose not to write about them at all because I don't know where to start. I don't think I'm a great writer, but I like to write.

So, anyway, as I'm not getting off to a great start here trying to say what I want to say, I'm going to try and be coherent.

I've been reading blogs recently of micropreemies, kids with cerebral palsy, and other things. I have a caringbridge page for my son with spina bifida, and at first, I wasn't sure that was what I wanted to write about here. I think I present a "nice" version and more of an update thing over there, and I think I could write more here about the reality of dealing with spina bifida and the stuff that goes with it. I also have a livejournal that I write about stuff with him frequently, but I'm thinking now, this would be a good forum to write an account of the stuff we're dealing with.

I also have three other kids, and I might be sharing things about them here, also. This is their story, also.

So, I dunno. I don't know if I'm interesting enough to do this, and I feel a little awkward about baring my soul. We'll see where this goes, I guess.

better

Things have been settling down. No neurological stuff seems to be presenting itself recently, thank goodness. In fact, he seems to be thriving, growing and learning. January and February were so incredibly stressful, I'm not sure what to think about them. March and April have been busy but mundane.