Thursday, May 31, 2007

That feeling of isolation

Sometimes, it just hits you, that feeling that no one listens or understands. While I know that's not true, sometimes it feels like it. It's when it's the people you think are closest to you, seem the most distant.

Yesterday, I had a conversation with my sister, and I exited the conversation feeling so slighted. During the hospital stays in January and February I felt very alone. I was two hours away from everybody, and their lives went on while I cared for a crying, in pain baby who endured more pokes and stabs than I would have been able to. It was hard.

My sister, I thought, had some insight into that. We've discussed it, I've tried to convey some of the stuff that went on and how I felt. I got off the phone yesterday feeling like I've never been heard. As if I've been talking to myself.

It's not all about me and how I feel. She and I have conversations about her and her frustrations, feelings, etc.

Yesterday, though, she was talking about her youngest and being concerned he might have adenoid problems. She said she couldn't put him through a surgery for his tonsils because she did that with her oldest, and it was so hard. I responded that my view on surgery is a bit skewed (I certainly don't advocate surgery unless it is needed, but the Big Dealness of it hasn't lessened exactly, but certain surgeries seem like bigger deals than others, if that makes sense), and that's all the further I got. She responded, "Just IMAGINE seeing your baby in pain! Imagine yourself having the sorest throat ever and imagine seeing your baby go through that."

I could not even respond to that. It's not like she's just some person of the street who heard our story for the first time and perhaps forgot some of the details. It's not like she's even an acquaintance who knows us and of our story. She's my SISTER. I talk to her almost every day.

Can I possibly imagine, can I, what it's like to see my baby go through pain? Can I? He had four neurosurgeries in the span of one month, and my sense of normal is a bit skewed. I held my poor little baby down for I.V. lines to be placed, for blood to be drawn, for shunt taps to be done, and I watched him go off to surgery after being informed of all the risks time after time.

Having tonsils removed is scary. I don't want my nephews to go through that either, but if they have to, they have to, right? I tend to be pragmatic about our situation and not fly into a tither every time he's had surgery, so I'm not going to be overwhelmingly dramatic at the thought of a "potential" surgery that may or may not occur. It doesn't mean I don't care, it doesn't mean it isn't a big deal, but when your son's brain has been tampered with as much as mine has your perception tends to be a bit different.

I wasn't trying to minimalize her situation, and honestly, I didn't say a whole lot. I pretty much kept my mouth shut other than to say as far as surgeries go, her older son's did go really well, with no complications, and that if she did have to go through it again, she would know what to expect.

I'm not sure exactly why she thinks I can't imagine what it would be like to see my child recover from surgery. Am I being overly sensitive or was she insensitive?

*sigh* It's just one of those days. I'll move on and get over it.

Friday, May 25, 2007

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.

Thursday, May 24, 2007

Two years ago

Two years ago I was pregnant with G. I had seen my midwife once as I was planning a homebirth, but my ob/gyn I normally saw wouldn't see me. I was very sick at 11-13 weeks. I remember calling and asking to be seen, and they said they couldn't see me for over a month. I knew at that moment I wouldn't be dealing with them.

Being I was going to have a homebirth, I wasn't going to have an ultrasound unless medically indicated. This was going to be a hands-off kind of birth. I felt very strongly that I needed to have an u/s, though, because I felt like something was not right, and I talked to my husband's cousin who is an u/s tech. She agreed to do the u/s, but it wouldn't be an official one. I was okay with that.

I remember being late for the appointment. "Marilyn" was waiting for me at the entrance of the hospital (a very small, rural hospital), and we went back. She asked me if it was okay if someone observed, and I said that was fine. She did the u/s, showing the other girl, and explaining things. She didn't take very long, though, and she kind of rushed through it, I thought. Afterward, as we were talking in the parking lot and saying goodbye, Marilyn said she had to mention something.

I felt this sense of, "Okay, here it comes, I KNEW it." She told me the ventricles were enlarged. Ventricles? What was she talking about? I noted the words in my head as she continued talking. I was around 19-20 weeks at the time, and she said that sometimes they resolve in a couple of weeks. Her recommendation was to have an official ultrasound in a couple of weeks by a different tech and read by the radiologist. She told me not to worry, but she definitely recommended I be seen again. I thanked her and told her I appreciated her taking the time to do this for me.

At home, I researched on the internet. At first, I didn't type in ventricles, but vesicles. When I did type in ventricles and got more information as to what it might entail, I prayed. Things mentioned were hydrocephalus, spina bifida, other problems that resulted in death, and many even mentioned it could signify nothing.

I found a different doctor, since my ob/gyn wasn't receptive to working with me. I was still clinging to the hope that I would be having a homebirth. I met with Dr. A, and I really, really liked her. She was perfect, and if I ended up having to deliver at the hospital, the facilities were acceptable and comfortable. She also felt the enlarged ventricles could resolve on their own, and we scheduled an ultrasound that would be about three weeks from the first one. Dr. A also mentioned she'd be on vacation at that time, but she wanted to know if it would be alright if I didn't get the results until later. I was fine with that. I left that day, feeling calm and reassured. I was leaving my fears in God's hands, and if something was wrong, there was nothing that I could do about it. I didn't stress or worry those two weeks. I really didn't. I did my initial homework, but I let all of it go. I trusted in God, but I knew, I just knew, that something was not right.

It's weird to think that it was two years ago. It truly seems like it was a few months ago we were dealing with the knowledge. I don't remember the date of that u/s, but I remember it was in May. I do remember when we got the results of the second u/s. That was June 15.

Wednesday, May 23, 2007


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.

Monday, May 21, 2007


This weekend we went to a park for a party, and G and siblings had a blast playing. G was determined to crawl up the steps over and over, and he did it. I was so proud and amazed at the strength his upper body has. He even went down the slide with my brother's help and me at he end. The first time he looked scared, but after that, it was belly laughs.

Other kids were there, and about four to five of them were his age, and it is always a little jolting to see where they're at as opposed to where he's at. It's impossible to not notice.

He's my incredible G, and he is who he is. I love him, I support him, I encourage him, I embrace him, I accept him, and I am truly blessed.

Thursday, May 17, 2007


Things have been quiet around here. I find myself worrying in the too quietness of it all! We've had doctor appointment after doctor appointment week after week, and May has been so quiet. G had his orthopedic appointment on the 2nd, and that's been it this month. I don't feel safe, I feel something looming in the future, and I hate that feeling. I want to just appreciate things for what they are rather than feeling watchful for every little thing. How does one work past that? I feel paranoid, and I don't care much for feeling that way.

The shunt has been THE issue this year, and I am having a hard time relaxing about it. Is it even possible for it to go an entire year without malfunctioning?? I know it's not only possible, but it happens for many people on a regular basis. Little things have been bugging me, though. A little head growth, bulging soft spot (intermittent), some "different" breathing that's hard to explain but there, a large bruise on his forehead from smacking it on the floor, veins seem darker (in my head, though?), and the other night he cried "owie" off and on for about an hour. He slept fine last night, though. This is why I feel paranoid. They are such little, subtle signs, probably easily explained away. I've been obsessively measuring his head again, and when I get like this, when this feeling doesn't go away, I hate to say it, but I haven't been wrong yet. The intuition with this kid is so strong!! I think he's teething to cloud the issue.

On a positive note, though, this kid is doing some exceptional things lately. Progress has been phenomonal, I think, and his PT has been happy with what he's doing. It's amazing when something clicks. He's been "dancing", and it is just adorable. I HAVE to capture it. He's also been becoming much more verbal and entertaining us with babble stories.

I have to let go of that worry. Even writing that, in my head, I hear, "but this...", "but that...", "you can't..." Worry doesn't want to let me go.

Thursday, May 10, 2007

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.