Tag Archives: Special needs families

All I want for Christmas

Does anyone else dread being asked what their kids want for Christmas?

The answer, in regards to my four year old girl, is easy. EVERYTHING. If there has been a commercial for it, she’s all about it. It doesn’t matter if she knows what it is – it’s on TV, and therefore she must have it.

With Katie, it just isn’t simple. Most ten year old girls want all sorts of things – makeup, nail polish, sparkly anything. Katie still loves to watch the TV shows she watched when she was two and three years old. I try to give her a chance to watch the latest Disney shows and boy bands, but her response is usually to start screaming. Smart kid.

Anyway, people ask me what they should get for her. I have to say, I hate this question. I hate it. I hate that I don’t have many good answers. I can tell people her clothing sizes. I can direct them to the baby toy aisle – anything requiring fine motor skills is out of the question. I can confirm that she still watches Sesame Street, and what videos she has.

I want more for her than this. I know there must be more out there that she would love. I hate that I can’t get it for her, but even more, I hate that I can’t even figure out what it is.

People mean well when they ask this question, but I’ve pretty much stopped answering it. I don’t have answers. This has actually led to a good thing. Now more people are brainstorming about what Katie might like. More people willing to take a chance on this or that toy. And that has resulted in Katie getting a few things I never would have considered picking up for her.

One year, her teacher gave her a singing dog. Like, LOUD. This cheesy critter dances in place and howls to the music. It has been adapted so that she can use a big switch to make it go. I never would have pegged this for something she would want.

She loves it.

So, this is what Katie wants for Christmas. She wants you to think of her, and to use your imagination. Maybe you’ll hit on something really great.

Life’s full of tough choices, idn’t it?

Katie got her gastrostomy (feeding tube) a month before she turned three. Her pediatrician had been nudging us in that direction for the better part of two years, with Katie clinging by her fingernails to the third percentile all the while. She didn’t drop into that failure to thrive range, but the summer she was two I was able to pull the clothes back out from the previous year and put them on her again.

Why did it take so long to make that decision? Well, it’s complicated. I was a stay at home mom at the time, and we didn’t have any family nearby. So, I was pretty much completely immersed in my first child and her care. We spent years in feeding therapy, and it wasn’t uncommon for me to spend 8-10 hours a day feeding her one little bite at a time.

At the time, I had reservations that had more to do with me than with Katie or a procedure or anything else. I was pouring myself into her care. When it came down to really needing to take the surgical step, I felt like such a failure. I felt like if I had done things differently, better, whatever, she wouldn’t be in this position. I cried a lot the day we decided to go ahead with the g-tube.

I was also worried about becoming complacent. Working on feeding, going to feeding therapy, trying different equipment, trying a therapist someone else said was really good, searching for the magic food that would make everything work – it was exhausting. I was afraid that if we had the tube in place, I would give up. I wouldn’t do my best for my daughter anymore. I was so tired.

In hindsight, it was all pretty stupid. We were spending all of our waking hours on this, trying to keep the stress out of the equation, but of course that was impossible. Katie got her button, and we got the hang of using it. Prior to surgery, we had to give any meds precariously by mouth. If she needed Tylenol, I would take it and put a few drops on a little bite of bread, and feed it to her bit by bit. We called them Tylenol sandwiches.

We did back off on feeding therapy, and realistically, that was also the right thing to do. What kid wants to spend their life working on therapy? What mom wants to spend all their time with their baby pretending to be a therapist?

Katie learned to eat but she never did master drinking. She was nursed initially, and never would take a bottle. She also has a delayed swallow reflex, so liquids and anything thin or light is really hard for her to control. For the longest time, I felt terribly guilty. If only I’d just bottle fed her, maybe… Well, maybe lots of things. Maybe she would have been able to bridge that gap by continuing on a bottle into her toddler years, and who knows, maybe even to this day. Or, maybe she would have aspirated and died.

I’m done beating myself up over it.

We kept up feeding therapy for awhile, but eventually let it drop altogether. Katie hated it. I hated it. She enjoys eating, and does well with that. She still doesn’t like anything remotely smooth – no Jello or ice cream for this kid. She gets the rest of what she needs through her tube. She doesn’t mind this arrangement, and I have reached a point where I am at peace with it.

Every once in a while, a doctor will ask about this, and whether we are pursuing feeding therapy. I just smile, and let them know that we have what we need. It isn’t conventional, but what part of our life is? Different isn’t bad. It’s just different.

Well, angelfish, the solution to your problem is simple.
Well, angelfish, the solution to your problem is simple.

iHusband

How often do you take your child to the doctor/therapist/orthotist/DME person etc etc? How often does your spouse come along? I’m curious about how many moms take this on by themselves.

I see a lot of waiting rooms, with lots of people waiting. There are usually more moms than anyone, by my rough guess. But I also see dads, grammas, whole families in significant numbers.

My husband has been to relatively few of Katie’s appointments. In the early days, it was because I was at home with her, and his employer wasn’t very flexible about getting away. Now, he has his own business, so… well, his employer isn’t very flexible about his getting away.

We have been doing some long distance doctoring lately – about a six hour drive when I make the accommodations that Kate needs for a road trip. My husband hasn’t been able to get away for these trips very often – it’s just more time than he can spare as a one-person business. Normally, I brief him afterwards. This isn’t terribly satisfying for either of us, but it’s what we have.

Katie has some bigger care items coming up on her schedule. She and I took a road trip earlier this week. We met with a neurosurgeon, who had more to say than I would be able to relay back home in a five to ten minute call. Fortunately, this time I was able to bring my husband with me.

In my pocket.

I haven’t played with FaceTime much. If you aren’t familiar with it, it’s like the videophone of the future we imagined as kids. I see you. You see me. We talk. Mostly, I’ve used it to say goodnight to my babies when I was away. My husband is more savvy, so really, he should have been on the doctor end, but oh well. He set aside the time, and was able to be at the appointment, meet the doctor, and give his input. I was able to avoid giving Cliff notes by pointing my phone at the doctor.

My arm got tired pretty quickly, so I just set my phone on the chair next to me. I thought I had him angled pretty well, but later discovered he mostly just saw the ceiling at that point. I kept looking over at the chair next to me to say things to my husband, only to rediscover he was stuck in a five inch tall phone.

Overall, it was good. It isn’t a perfect solution, but it is a definite improvement over not having everyone there. I think we’ll be able to fine tune the process into something good.

Mine is the not-green one.
Mine is the not-green one.