But first, the fun stuff! Maia's birthday party was great. We had a big crowd of family - all the grandparents! - an aunt and cousin, a couple of our best friends, and our neighbors. Sofia led the scavenger hunt for the fairy pieces of clothing, and the little fairy guests were just precious.
We brought the fairy clothes, wings, and hats inside to complete our fairy clothespin dolls, and here is how they turned out...
Then we had cream cheese and jam bagels, strawberries, and of course woodland fairy mushroom cupcakes.
Then came Monday. Luckily Grandma (my mom) had offered to stay and help out with the whole treatment thing and we gladly accepted, not knowing what to expect. I suppose Monday was the hardest. They tried putting the IV in Maia's right arm (she's a leftie) and got it in, but while they were wrapping, taping, etc. it slipped out of the vein. Meanwhile Maia had completely lost it and was trying to crawl up my face to get away from the nurses. So we did it again on the other side. This time, Grandma held her and I put my head against Maia's and sang Twinkle Twinkle Little Star in her ear, over and over, until they were done. I couldn't think of anything else. After that, she was pretty calm. She had expended most of her energy. We held her, watched a video, and finally got to go home.
Thankfully, we managed to keep the IV in and functional for the three days so Tuesday and Wednesday were mainly mellow. At this stage Maia is traumatized by any sort of poke and she needed one more on Wednesday. This will be a weekly shot and they suggested that we give it to her at home. Um, really? Because that wasn't on my list of things to do before I turn 38.
When we first met the rheumatologist a few weeks ago, she spent a lot of time with us, listening to our whole story of how Maia's condition had progressed over the last year, including some of my commentary about all the missteps (in my opinion) by our former doctors. She said to me, "You're in the right place now." At the time it was comforting because I knew that she felt confident that they would be able to help Maia. But this week, I couldn't help but feel like, "What the hell am I doing here?" All the sick kids, all the supporting family, the toy cabinet for the kids when their treatment was done, the nurses coming in to check blood pressure, temperature, etc. - these things were not part of my life. But they are now.
I have a good friend from work who's daughter has an ongoing medical condition that has required similar drugs and various treatments and hospital stays since she was 7 months old. She knew exactly what I meant, which made me feel better. All those people who seem so comfortable there, or seem like they are supposed to be there, feel just like me, they don't feel like they should be there either. And they are going along, just like us, fumbling through, feeling sad and sometimes crappy that their kid has to go through this. I'm sure I'll eventually get over this, and Maia will hopefully get better at all the pokes, but for now we are going to whine and complain about it, just a little.
Here's the little trooper after the first day. Thank goodness for Hello Kitty bandaids.
3 comments:
After my son was born, a good (and wise) friend sent me this email. It's by Emily Perl Kingsley. I really liked it. And boy does it ring true.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I am so sorry hon. I can't even begin to put into words how hard this must be for you and your family. My youngest has had a lot of medical problems and nothing shakes you to the core like seeing your child hurt and go through treatment.
Please know I am here for you. Email me anytime, K. andieedwards@comast.net
So glad the party was a success! The fairy dolls are adorable. Too sweet!!!
Big hugs to you and your family. I know I'm always terrified that Sarah will get sick enough to need IV treatment or worse. I can't imagine facing taking your child to repeated treatments like that. I sincerely hope she responds well to the treatment and that you have better days ahead.
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