Monday, November 30, 2009


The phone rang earlier today, and the woman on the other end told me she was from the "Make a Wish" foundation.  I was silent for a minute, and she had to repeat herself. Kaleigh sent in an application for Pipo sometime last Spring, and I hadn't given it much thought  then. We had gotten a brief phone call saying they had received the application, and that they would have to verify with Pipo's doctor and then get back to us. At the time, Pipo was doing well and I thought this program was meant more for kids who were terminally ill.

Today, I was told that Pipo is being granted a wish... that they will assign two volunteers to come to our house and try to make that wish come true. I was stunned enough, silent enough that the woman told me she would let me think about it, and call next week to set up an appointment. I told her that would be fine, and hung up the phone and was silent again. It wasn't until about 10 minutes later that I burst into tears.

I've written before about the reality checks we've had in the past regarding Pipo's FSGS. It is so easy to get lulled into thinking the disease isn't there. Since last December, Pipo has been relapsing regularly. Not bad relapses... we have caught it quickly each time, adjusted his meds and pulled him out of it. In the back of my head, I knew the frequent relapses weren't good. I had spoken with his doctor at the end of the summer about his current immunosuppressant having run it's course. I was afraid it wasn't working and that we would need to look for something else.

This last hospitalization was the biggest reality check yet. People have been constantly asking how Pipo is, ever since we got home. And I tell them he's fine... it's part of our life, just a small stumbling block. That's true for the most part. Fitz and I have talked about how hard it would be to have a healthy child and suddenly get an FSGS diagnosis, how hard that would be. We've talked about how in a way, the FSGS is almost a good thing... it's how we found out about Pipo, it's why he is here today. Without the FSGS I don't know if we would have this funny, loud, exuberant, smart, brave son. But none of this changes the reality. FSGS sucks. It's totally unfair that he has to check his urine every morning, that he has to swallow handfuls of pills twice a day, that he has to have blood drawn regularly and stay in the hospital sometimes. I know things could be worse, I know other kids who go into renal failure, need transplants. But it's is still so unfair to be a kid and have to put up with all that.

And this is where the tears came from today. We tell everyone everything is fine... that he is doing well. And he is. We tell ourselves it could be worse. And it could. But someone is here, acknowledging that it still is so unfair, and they want to do something for him to make up for that unfairness.  I wish I could grant every wish for my son. I am so incredibly thankful that he will now have one granted.


mayhem said...

Wow, that's awesome that he'll get a wish granted. I'm interested to see what he'll choose! But yeah, the FSGS part pretty much sucks, huh?

Mama of 5 said...

Great news! MAW is so fantastic. I cannot believe how awesome the experience has been so far and we haven't even left on the wish trip yet! So excited to hear what Pipo wishes for:) The volunteers are great at helping kids with their wish.

Chapter Two Manmi said...

I've been so sporadic about checking in...and had lots of wonderful posts to catch up on today. What a blessing to get this wish, and I understand the tears too. It seems bittersweet in some ways, and super sweet in others. I love how you love your family--each and every one.