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.

Tuesday, November 17, 2009

Sibling bond

One of the toughest thing with older child adoption in a large family has got to be that expectation you get that this child will quickly develop a loving bond with a big group of strangers. I knew this was unrealistic, and we had tried to prepare ourselves for issues. Pipo immediately hit it off with Margaret, who he started school with, he worshipped big sister Kaleigh, and adored Tommy and Emma who were still little at that point in time. We expected issues between he and E.J. as he was replacing his new brother as the oldest boy in the house. With time and patience, we worked through that one, and they quickly became best buds.

The hardest relationship of all, though, was that between Pipo and Charlie. I have a bit of a soft spot for Charlie, and couldn't imagine anyone not loving him. He's a sensitive little marshmallow of a kid, and sees the good in everyone, which makes him particularly vulnerable. So it broke my heart to hear Pipo tell him he "didn't like him", and that he "wasn't his real brother." Charlie looked up to Pipo so much, and desperately wanted Pipo to like him. We had many conversations with Pipo, many firm sit-downs, where we told him he had to be nice. Nothing seemed to get through to him.

I had to step back at one point and really look at it all from a distance. I realized then that to someone new in our house, I could see how Charlie could be annoying. Especially when he was trying so, so so hard to get Pipo to notice him. The other kids have all grown up with Charlie. They 'get' him. They know that he gets revved up easily, and that he can't always help it. If they are all riled up playing a game, the others can 'turn it off' and walk away, but Charlie can't always do that so easily... just the nature of ADHD. He has a harder time finding his "off" button. Pipo had not grown up with this. All he knew is that this little kid was following him everywhere, talking a mile a minute and constantly touching him.

I sat Pipo down at one point and just laid it on the line for him. I explained ADHD as best as I could, telling him that it was a bit like his kidney disease, that Charlie was born that way and couldn't help it. That we all worked together to help him overcome it, and that Pipo would have to help too, because that's what we do in a family. It took some time, and more conversations like this, but it slowly started to sink in.

Little by little, Pipo started to realize how much he and Charlie have in common. He saw how great Charlie's sense of humor was, and how funny he could be. We started to notice them hanging out a little more, doing things together here and there. I celebrated each small moment I saw.

Time has passed since then, and it's easy to forget that there was ever an issue between the two. But every once in a while, something reminds me, and it makes me melt to see how close they are now. Tonight, we all sat down to grace before dinner... the first dinner we've shared since Pipo went into the hospital last week. As we finished grace, Charlie piped up with "and thank you God, that Pipo is back home with us." I glanced down at Pipo and saw the grin on his face. After dinner, I went downstairs to throw a load of laundry in, and saw the two of them curled up together, sharing a beanbag and watching a movie. The bond may have taken time, taken work, but it's there in full force. They are 'real' brothers... no blood required.

Sunday, November 15, 2009

The answer my friend...

Pipo and I have been cooped up in a hospital room in Boston for a few days now. His kidney disease has relapsed, and he needed some IV fluids to get him back on par. He is doing well, but bored and awfully tired of hospital food and diet restrictions.

Last night, I had left my phone out in the van to recharge, as the battery was dying. I went out to the garage to retrieve it, not realizing it was almost 10pm by then. Almost realizing that the hospital practically goes into lockdown at that time of night. I could not get back into the building. I wasnt worried at first, figuring I could find someone on security to let me in. But I couldnt find anyone, and then I got lost, as this hospital has multiple buildings on both sides of the street that are connected.

My saving grace turned out to be Bob Dylan. Turns out he was doing a show right around the corner, and it was letting out just around the same time. At first I was a little thrown by the sudden hoards of people sharing the sidewalks with me... an incredibly eclectic group with a broad age range. I was on my cell phone with Fitz, who told me about the concert. I relaxed instantly, knowing that if these were all Dylan fans, they were bound to help me!

Sure enough, everyone I asked was more than understanding and helpful, and I was soon directed into the right part of the building to get back in.

So thanks Bob... “On a night like this, I‘m glad you came around.“

Tuesday, November 10, 2009

Cartwheel boy, revisited - an in depth look at ADHD

A couple of things lately have spurred on this post. One is that I recently commented to Fitz that Charlie seemed to have grown out of his cartwheel phase. Fitz quickly informed me that the cartwheels are alive and well at school. Charlie started at Fitz's school this year, which is a campus rather than one building. There is some moving around from classes, and apparently Charlie takes full advantage of this to get the cartwheels out of his system. I think we don't see them at home so much because he has the trampoline now to let out that excess energy.

The other thing was the recent progress letter from Charlie's teacher. It was glowing, but it did mention his distractibility, and lack of focus at times. I love his teacher, and it sounds like Charlie is having a great year so far, but this was that reminder that the ADHD is alive and well.

I have mentioned ADHD on here in the past, but never spoken in depth about it. This post may end up way longer than you would like :)

Charlie was not quite 2 when we were first made aware of his attentional issues. Yes, that's right... not quite 2. He had had some hearing/ear issues and we were having him evaluated by Early Intervention for speech. He ended up not qualifying for speech, but they told us they were concerned with his attentional issues, and we were given an educator 3 days a week at our house to work with him.

I was shocked to say the least. Pre-kids, I was (am) a special educator who worked primarily with ADHD kids. But these were school aged kids. I had never known of this being picked up so early, and I never would have seen it in my son at that age. Sure he was a busy active (okay, crazy!) toddler, but aren't most little boys? But I will tell you this... years after this, I can say that it was the best thing that ever happened to Charlie. I don't think he will ever need meds, and he is forever coming up with new coping strategies just like that long ago teacher taught him to.

When I was teaching, I often encountered regular ed. teachers who were frustrated by the active kids in their class, and at a loss of how to handle them. I came up with an easy layman's explanation that seemed to help. It goes like this...

Everyone has filters in their brain... filters coming in and filters going out. As you read this, you might hear a television in the background, kids running around, the washer running, and that’s just the auditory stimulation. But we filter all this out so that we can concentrate on the task at hand. For ADD and ADHD kids, this is often much harder. All that excess noise may be coming in at the same level. I once had a student describe it to me like this... you are in the TV department at sears, with 20 screens on the wall, but they are all on different stations, all equally entertaining. Its a big effort to focus in on the right one.

Those are the filters for things coming in. There are filters for things coming out too. If I was talking to you about this, you might be thinking, "this is a load of crock" or "who the heck is this lady" but the filters in your brain would keep you from saying something inappropriate.  All kids are impulsive at heart, but the truly ADHD kids have a hard time filtering those impulses.

This is not to say that it's impossible. It's just something they have to consciously work at, something that comes much easier to most kids.  One myth that drives me crazy is that ADHD are "bad" kids. People are always shocked when they find out Charlie is ADHD. Some people even question the diagnosis. "But he's so good, so well behaved," they say. And he is. He is a great kid with a great heart, but he works very hard at this. And the impulsivity still comes into play (especially at home with siblings!)

He holds it together well in school. He comes home with a lot of pent up energy. He'll go immediately to the trampoline and let out some steam, and sometimes he'll ask to take a shower in the middle of the day. He's learned that the enclosed shower stall, the white noise of the water, and the pressure on his head, all help him to pull it back together. 

There are no showers in the classroom however. And sometimes, when the stimulation in the room gets to be too much, he may get caught looking out the window, at the fields, and the wide blue sky, because there are less distractions out there.

He is our dreamer, our thinker, our crazy cartwheel boy, and I wouldn't have him any other way.