Highs and Lows

Well, mostly highs to be honest, and high time to share them too!

Just thought I would give you a glimpse of some of the more fun, normal moments of our last couple of weeks to show that our lives are not totally absorbed by the hospital.

This was Agnes and Caleb playing together one afternoon recently, while Adam was watching--wait for it--Mr Tumble. They are so cute--she is really "talking" now and walking lots and enjoying humour. Caleb is doing well too, and is such a big help around the house. He even helped me decorate our cupcakes, as seen here before the plate accidentally tipped over sideways onto his shirt!!

One major recent step forward with Adam happened during his recent hospital stay when he was tentatively diagnosed with reflux and put on a medicine called Omeprazole. They haven't conclusively determined if he really has true reflux, nor is it clear whether it's him or caused by all the other drugs he's on, but since they started this anti-reflux med he's been sleeping much better and seems a lot calmer. Poor soul, just glad that they found it--there's always a silver lining to everything as they say.

Today as we were leaving the hospital following Adam's routine lumbar puncture he stopped off into the room next door, leaned up to where a lovely Granny was holding a tiny little baby in front of her, facing forward, and gave him a gentle kiss on the mouth, complete with "MWAH!" as Adam does. Truly sweet, as if he's passing on some of his hospital zen to anyone he thinks needs it!

Finally, we've been swimming again! The International School of Aberdeen has opened their pool to families with children with cancer on a Saturday morning and we've gone two weeks in a row now. It's such a great thing, and the high-school kids who volunteer and work with the kids who come are a treat to get to know. I'll try to take and add some photos of their session tomorrow soon.

That's it--hope we brightened your day just a little bit for once!

Apples and Oranges

"Don't compare your child to other children." Cardinal advice from all the baby books, and yet I bet if you surveyed 100 parents out there 99 of them would say that at one time or another they had compared their child to another child (and the 1 who denied it is lying). It's hard not to compare--as humans we are born with a special impulse that makes us look at ourselves and look at others and see how we rate. It is only natural that we would do it with our children too.

When Adam was born I tried to keep up with the baby books for as long as I could. If a range was 6-9 months and he was 10 months, I could always claim that he was three weeks early. If he was meant to do something at one year, I would cite all the kids I knew or had heard of who didn't do it until 18 months, thus buying us 6 more months. Part of this was because we didn't have a diagnosis yet, and there was still a chance that he was "normal." I was holding on to this normal and trying to compete with it--comparing him at every level. Another reason was that I was instinctively defending myself and Adam against all the people who asked how old he was and then looked carefully at him. You could see my answer didn't match their expectations, but I always felt that if I had a reason for the discrepancy that might shield Adam from the inevitable response, thought if not spoken: "What's wrong with that kid?"

After he was diagnosed positively as having Down Syndrome, I felt the pressure lessen. There, you've got your answer: "what's wrong? He has a disability. That should satisfy you." I, of course, was not satisfied, as I didn't feel that anything was wrong with Adam in the first place, or to be more truthful: I didn't want it to be seen that way by the world. However, that was when I began thinking of apples and oranges, as in "you can't compare these two things, they're two different fruits!" I realised that Adam's diagnosis meant that he was an orange, and I could relax and let him be different from the apples.

This was a comfort for a while, but could never actually save me from my own natural human impulse. The trouble was, I also felt that if Adam was an orange, then we had to keep an eye on the other oranges! First we read several books about kids with Down Syndrome, all of whom were already much farther on than Adam. Then we were in a support group for parents of kids with DS who were talking, walking (Adam didn't walk until 27 months!*) and generally progressing in ways that he was and is not. Now he is in school and needs the most help of any child in his class. Any group that we go to, I can guarantee that Adam will be the child playing on his own and the others will be playing together. He is, of oranges, certainly behind in the flanks.

Why did this come up? To be honest, because I read something about another child with DS who it turns out can read and talk. As I read I could feel the old bristles coming up..."what, you mean life is hard with your child? But she can read and talk? What more could you want??" I know, it's pathetic, but getting to the bottom of our pathetic impulses is the only way forward.

I have enough friends in the disability world to know there are many children who have more difficulties than Adam, who will never be "ahead" in the ratings. I know how wobbly it is to compare Adam to another child and feel either discouraged about him or critical of the other child. In a sense it's still apples and oranges, only Adam is the orange and everyone else is an apple!

As I think about it, I know why that happens in my heart. It's about the hopes and dreams I have for Adam, wanting him to be able to interact with his peers, play sports with other kids, laugh and tell jokes with his brother, read and enjoy books with his father, go to work someday and maybe have a relationship. It's also about the fears, that he will never be able to talk or communicate well with others, that he will never experience friendship, or camaraderie, or the feeling of sharing intimacy with another person.

I hope, and I dream, and I fear: therefore I compare. It may not be that simple, but that is the best summary I can think of for it. And what is the way to deal with this, you might ask? Well, it is my husband's ability--and Adam's extraordinary gift, to himself and to me--to stay in the present. Whenever I am tempted to bemoan Adam's lot in life, or mine, to regret the past or to worry about the future, Brian reminds me of the critical element I seem to miss: "But just look at Adam. He's so happy." And it is true, no matter what I think Adam has missed or will miss, no matter how much he is behind the other kids in his class, he is happy. He doesn't worry about the past, or the future. He is like the biblical lilies, just hanging around looking brilliant and being fully who he is supposed to be. And the more I can let him be that, I am allowing him to have the greatest success of all.

By the way, * was supposed to remind me to say that not one day of the 27 months mattered in the end. When Adam walked, we cheered.