Pirate Booty

No it is not a porn video. But yes, that would make a good title for one. It is a food that is something like a cheeto. It can almost melt in your mouth and it is the one food that Daniel can eat and we don't need to worry about him choking on. It is also the one food that we have been trying to get him to use his pincer grip to pick it up and put it in his mouth. Well, today that is just what he did. Ladies and gentleman I give to you our little boy who has discovered how to feed himself!

The Present

It has been a while since we have talked about Daniel's progress and what he is doing these days. I believe that Daniel makes progress everyday and it is possible to see if you just keep your eyes open for it.

He is very proficient at getting to a sitting position from laying down. He continues to get up on hands and knees and rock back and forth in a starting position for crawling. Daniel has become VERY good at standing and will even stand almost unassisted at times. He continues to babble like crazy and I swear he has a whole lot to say and is trying to tell us but we just don't understand. He continues to say Mama and Dada and Papa but when Grandma and Papa were away for a week a few weeks ago he started to say "Granma." He always seems to say the names for the people who aren't there. He has also become very much the jokester making up his own way to amuse us while playing patycake. He has a wonderful sense of humor, a wonderful smile and a wonderful laugh. He is at the stage where he wants the people in his life to not leave him, even for a second and he expresses that very well. He is very attached to his mama too which makes it difficult for mama to leave for work every day.

These few things sum up Daniel but in no way is it everything. I love that Daniel continues to progress. Though I may feel sorry for myself and my fears and worries, Daniel pushes on and I am so proud of him for doing that.

The Future

I used to think that I wanted to know everything about the future. I wanted to know exactly what was going to happen and how and when. No surprises.

Faced with an uncertain future, I now question why I want to know such things. How will it make my life different or will it make it any different?

I thought that it would be nice to know what is going to happen. To be able to prepare for it, but what if it isn't even something that I can prepare for? What if I were to learn about the future but have no way of knowing what to do with that information?

I have a need to control things and the fact that I have no control over the future is very difficult for me.

Daniel's prognosis is a mystery. Will he walk, will he go to school, will he progress at all beyond today? Will he have seizures? Will he require a wheelchair and 24 hr care?

Jason is always quick to point out though that we could even ask those questions about Alison. A happy and healthy child but what do we know?

I worry unnecessarily sometimes. Or, shall I say, I worry when I cannot do anything for what I am worrying about and so I waste time (precious time) worrying about the future and not paying attention to the present.

I have learned a lot since Daniel's diagnosis. I have learned about what is important in life. I have learned to treasure the small things. But the one thing that is taking me a while to learn is how not to worry and look into the future. I have wanted a crystal ball for so many things in the past. I wanted to know. I was always scared to know but thought all along that I would be better off.

I have to learn, am learning that the crystal ball would not give me any pleasure no matter what it told me about the future, it would only make me lose what I have now.

Two Very Different Worlds

This past week I took Alison to get her registered for Kindergarten. I am not sure why this was such a hard thing for me. It could be just the realization that she is growing up, that she is not the little toddler she was not too long ago. I am having a hard time with it all.

This week I also called about initiating Daniel into the school system too, but in a very different way. He remains in early intervention until he is 3 years old however, we have the option of exploring what the school system has to offer in the way of special education for him. It is a whole other world.

In the first world there is normal lingo of registration, kindergarten readiness, reading, school bus, first day of school and in the other world there is this language that I am not used to using. Things like evaluations, therapist--words that don't belong in an almost 2 year olds life.

It is still raw, it still hits me sometimes the way it did 9 months ago, that feeling of having your whole world taken and put upside down. I am still trying to catch my breath, still trying to make sense of it all. On the outside it may seem that I am okay but it is very much there close by the surface and I don't know when or if it will ever go away.

Family vacation

We just got back from Disney World and had a terrific time. I was just looking over the photos from the visit, reliving some of the highlights, and certainly this trip was mostly about Alison. At five years old, the Disney magic is real to her. Ask her, and she'll tell you that she met and spoke with actual Princesses.

But the photos also reminded me of the quick thoughts and momentary observations that raced through my head throughout the trip -- thoughts and observations about Daniel.

Early in the trip -- I think it might have even been on our first day -- Lara remarked that it was difficult for her to see all the other kids who were Danny's age. It was hard for me too. Under normal conditions, Danny should be a toddler by now. Kids his age should be mobile, whether crawling, walking or scooting. Kids his age are eating solid foods. Kids his age are talking. At Disney World, kids his age were running and playing in the pool.

Certainly, we are aware of Daniel's deficiencies when we're at home, living our everyday lives. Having just been surrounded by loads of other families for nearly a week, though, Daniel's delays seem more pronounced. Not to oversimplify his condition or discount his progress, but in general Daniel exemplifies the abilities of an infant in the body of a toddler -- a tall and heavy toddler.

Even a toddler Danny's size still fits into a baby stroller, so Danny's limitations probably aren't immediately apparent to most. For this reason, we obtained at Disney World a sticker to adhere to Daniel's stroller, a sticker that identified to theme park employees that our stroller was to be treated the same as a wheelchair. This situation allowed Daniel to remain in his stroller in areas where strollers were usually prohibited. We didn't have to park the stroller or fold it up as other families did, for example, before queuing up for many rides or entering certain attractions.

While this was a convenience for us, it was also a sore reminder of Daniel's condition. I looked around and saw older kids and adults in wheelchairs and so-called ECVs, those little motorized carts, and thought that this might be what Danny needs in a few years.

Make no mistake, I had a wonderful time on this vacation. Even though there were some tantrums and crankiness, and not all of them exclusive to the kids, I almost wish that we could have stayed longer. I always find it hard to go back to work on Mondays because I miss my children terribly. Today, I'm going back to work after more than a week of being with them. It's enough to make me want to put my career on hold to be a stay-at-home dad. (Which, by the way, is something that I have often said that I would do if we could financially swing it.)

If I did stay home with the kids, I would make Daniel's therapy my job. As good as his therapists are, I don't feel that they provide nearly enough attention. One hour every week or two just isn't cutting it. I don't blame the therapists necessarily. They are in high demand in a part of the state where there just aren't very many such therapists to go around.

This post is a bit all over the place, I know. But I suppose the haphazardness of my writing is an indication of my mixed emotions in the wee hours before I have to go back to work. I'm not sure if this vacation has helped me to put things in perspective or has hampered my take on my boy and his lissencephaly.

My Boy

It is so much fun to watch your children develop a personality.

I have loved watching Alison's personality develop over the years. Even when she was born, I could see what kind of person she was going to become. The child did not want to sit still from day one. She wanted things her way or else. Guess what she is like today?

Daniel is different from his sister though and it makes for an interesting mix. Daniel is a bit more mild mannered and laid back. He takes it all in and then decides if he is not happy with something. You can tell by watching him that he knows more than he is letting on. It is almost as if he is taking notes on what life is like.

By contrast his sister tackles life and asks questions later. Not that either one of these personality traits is better, just different.

In Daniels case though there is a lot more mystery behind his personality. Sometimes it is difficult to tell whether it is him or his disability that is coming through. Sometimes I wonder how much his disability shapes him and his personality. Would he be a different child altogether if he were normal? Would he be bold and daring and loud and unafraid or would he still be the sweet sweet boy that he is only with more mobility?

I know that inherently we have a built in personality, but then there is that nature vs. nurture argument that worries me. Will Daniel grow to be angry, quiet, withdrawn due to his condition? Will his sister? What affects Daniel certainly does not affect him alone.

The ripple effect began long before he was born and really there is no telling how it will end. I am enjoying watching to see what happens, stepping cautiously and wanting very much for time to stand still.

He Moves

Last night Daniel got on all fours, for the first time by himself, and rocked back and fourth for a few seconds. Then while he was on his stomach a short while later he was trying to reach his daddy and sister and couldn't quite get to them so he scooted forward a tiny bit.

I know it seems very small but to us, it is truly wonderful. We cannot wait to see what he will do next and where he will go...