Tag Archives: medical

Ronald McDonald House – Another Star Lost

“They never knew how much a broken heart can break the sound and change the seasons. Now the leaves are falling faster, I believe in ever after. You gave me hope through your endeavors, now you will live forever.”

Yesterday was great, spending the day with friends. But then it all comes crashing down when I read the message on my phone this morning, and saw the posts. Now my heart spills out in an agony of tears. One bright star, smiling through the impossible cancer she faced. The star has moved on, but her light would not fade.

This is the second playmate that we have lost in the last year. My daughter, young as she is, won’t remember, and it doesn’t impact her life in any way.

But I remember.

I remember being at the Ronald McDonald House during our time in Seattle, talking with the other moms and sharing treatment stories, hardships, the progress we’d made – sharing in the collective burden of having a child with serious medical needs.

I remember coming together for the communal dinners supplied by volunteer groups, joining in the activities that were always provided. We shared about which group’s cooking we liked better, and about the difficulties in getting our kids to eat. I remember that as we got further into our own chemo treatment, my little girl would only eat chicken nuggets and, toward the end, nothing at all.

We rejoiced when one of our group got the okay to go home, whether it was just for a few days’ leave or they were done with treatment and leaving for good. There was one family who’d spent two years at Ronald McDonald, never even going home once for a visit. They finally got clearance to go home permanently, and we all cried. They were the longest running visitors at the Ron Don house.

There was a park nearby, where I sometimes took my little girl. Technically, because of her immune system, she wasn’t supposed to go to public places like that, but sometimes the little bit of joy it brought her was worth it. She loved the swings. Sometimes, a Ron Don family would join us. A few times, it was a dear little girl, six years old, who was Lanae’s friend.

That same little girl passed away last year – went home after treatment, and was back in Seattle in a month.

We’ve lost others, as well. And with the news of each one, I am reminded of the ferocity of the beast called cancer, and I feel a stir of fury and heartbreak, and I can’t help but feel the burden of the world. I look at my daughter, so strong and healthy, and I feel sad that she won’t remember these friends that she so loved to play with.

But I remember. I remember the laughter they shared, the shared struggles we faced. And I’ll keep that memory in my heart, along with so many others.

Izzy, you were a bright spot in a dark world. I’ll never forget it.

 

Into the world of special needs

Special needs. It’s a little world all in its own. Half in the “normal” world, half in the world of doctors, hospitals, and therapists. It’s a world where the smallest actions have ripples – a single step is progress, a low fever is worry.

It’s been a year since my daughter became “special needs.” Before that, we were the average family just trying to make it by. Then everything changed. And I learned that when you’re special needs, things change so drastically.

These are just a few of the things that come to mind for me. Maybe you can add a few of your own?

You become familiar with medical terms, hospitals, and doctor’s offices. You might have your hospital’s number on speed dial, but more likely, you have it memorized. You know the layout of three different hospitals, but one is more familiar (and more loved) than the rest. You know about medications, diagnoses, clinical terms like “hemiparesis.”

You have a love-hate relationships with therapists. New ones especially. And once you find one you like, you don’t want to move, because you know it’s soooo hard to find one who connects so well. The therapist may know her stuff, but if there’s no connection, nothing’s happening, right? And it’s so hard to watch your little ones struggle so hard to do a simple task.

Therapists have a love-hate relationship with you. New ones especially. You’re so used to accommodating for your child, that inevitably spills over into therapy time. After all, you can’t just flip a switch and be done. You spend your time translating, adapting for language or physical difficulties, knowing your child’s needs and wants and capabilities, that anyone else doing the same is difficult to take.

You’re your child’s own therapist. Therapy doesn’t happen as often as you’d like. There’s insurance, and schedules, and all that goes into it. So inevitably, you find yourself working with her at home, or going places just to challenge her facilities. Most parents take their kids to the park to play; you take yours to the park so she can practice walking up those steps.

You’re a barrier between your child, and the rest of the world. You’re right there when she has difficulty walking across the uneven ground while other kids race by. You’re the interpreter when she wants to go up and say hi to a stranger, or give them an energetic hi-five. You’re the wall between her unsteady balance and the adults rushing past who don’t see the child who has trouble walking.

You become far more anal than you ever were. You never used to care about kids climbing, running, playing on their own. Now, you can’t stand to be more than two feet away. What if she falls? She has that speech impediment – what if the other kids can’t understand her?

You’re not sad about starting preschool, because you’re just happy that she gets to be around other kids. Points if they happen to be kids with difficulties like her own.

You take extra time planning events around your child’s needs. Like birthday parties. The park – too open, and she wouldn’t be able to keep up with the other kids or run around with them. Is there an indoor place where they can all have fun together?

Play time becomes therapy time. You know more about how to make average toys into therapy games than most people even know how to play basic kid’s games.

Clothes shopping becomes a different story for you. It’s not just about finding the right size, it’s finding the right fit. You’d almost rather other people not shop, because it’s difficult finding the right one. You specifically note on Christmas wish lists to please not get certain items like shoes or even slippers.

Your wish list changes in other ways, too. No longer does it include basic interest and likes. You have this insane desire to put together a comprehensive, detailed list of the exact activities and toys that would be “great for therapy work.”

Other parents teach their kids to greet someone with a “hi” and small talk conversation. Your coaching on teaching your child to greet someone includes focusing on specific words or movements.

You love talking about it. When you find that rare person who knows what it’s like (such as the one other special needs mom at the park), you can easily spend hours discussing the topic. You have no problem informing others what you have to deal with, or about the progress she’s making. You love talking about her history, about where you’ve been and where you’re headed.

At the same time, part of you longs for normal. You appreciate those few who treat your difficulties as though it’s totally normal, who simply accept it as is, without even a comment. Not that they ignore it, pretend it isn’t there, but that it’s accepted as normal, as part of life.

Your world certainly changes when you enter the “special needs” arena. Everything revolves around the needs of your child, the difficulties she faces. You don’t avoid life, but when possible, you try to plan for something that will allow for her handicaps. And above all, you love and treat your child the same as any other parent.