Doing the Best I Can

Every mother remembers that first moment when her baby was placed in her arms. We look at that sweet baby and strive to do the best we can, learning as we go. We all have to make decisions, big and small. Some moms have to make decisions they never imagined, and are thrown into a world of medical decisions and therapists. I never imagined I would approve a treatment plan that might cause heart failure or becoming a "vegetable". I thought children getting cancer was a rare thing and it certainly wasn't something I had to worry about. Yet 46 children get diagnosed every day. There are so many worries. Most of the day is consumed by thoughts of food, diapers, meds and germs. How much he's slept today, if that's too much or too little, because either way could be bad news. I watch how he walks, to make sure he's using both legs equally and isn't limping. When in stores I have to make sure his mask is on and that the cart that I scrubbed down before putting him in it isn't parked close enough for him to be touching the germy shelves. When checking out I look at each register person, to see if any have red noses/cheeks like they have a cold before touching my stuff. I miss the days of just going to a store and not thinking about all this stuff, but we're in survival mode now and I'm determined to do everything I can to keep him safe. Today marks 25 months past diagnosis and it's emotional looking back and thinking of all the things we've been through. It's been quite a long, emotional journey so far, but as I talk to other parents and hear of other stories, I feel very fortunate to still have him with us.
I never thought I'd have to deal with Autism either, outside my chosen profession. It's another one of those scary things that nobody really knows why it happens and there's no easy medical test for it either. People hear Autism and they think of "Rain Man". They don't realize that the spectrum is very broad and that high functioning Autism is often hard to recognize for those unfamiliar with it. It's hard to have people stare at your misbehaving child in the store. I try to ignore them. I've had people say I should just get a sitter to go shopping, or to just strap him into a stroller. That would be convenient for me, but that isn't teaching him anything. Every day I'm amazed at how far Dawson has come with things. We've worked hard and it's good looking back and seeing the progress.

We've seen more professionals than I'd imagined. Neurologist, Psychologist, Psychiatrist, Speech therapist, Occupational Therapist, social workers, teachers, evaluators and more to come. I'm always looking for things that will benefit him. Which is why I googled and emailed every Autism orginization in the twin cities, which was quite a few! I was happy to find out that a full time spot just opened up and is being held for him. We will finally be able to complete his diagnosis process and get him some more therapy to help him deal with transitions, difficult times and social situations better.

People often say they have no idea how I do it all. I just do the best I can. I tend to the child with the most immediate need first. I multi-task, making phone calls, answering emails and doing things online while I nurse. I often cuddle Dawson while I'm nursing Gabriel. Or when I put Gabriel down, Dawson will run over with a big smile and say "cuddle mommy?" because he knows it's his turn. I use the hospital volunteers to help out. So Gabriel doesn't have to sit in a swing or crib all day. So Dawson can take a break and go to the playroom for a while. So Tyler has someone in the room so he can continue to be out of his crib while I'm getting something to eat. It took me quite a while to ask for help in the beginning, but things are so much better with the volunteers around. It's crazy, there really isn't too much down time, especially with Tyler on an IV pole, so I have to follow his every move. Dawson always wants to go play somewhere. If we go out in the hallway, it's often hard to keep them together. Dawson wants to play and Tyelr wants to run the halls and play with nurses. Once the day is over, the kids finally settled into their beds, I get "me" time, to update blogs, watch tv or just go right to bed. It's nice to be able to reflect on the day and think about what worked and what didn't. Mentally making a list of things to do or ask about the next day.

HOPE Run and Family Time

This morning we went to the HOPE Run, organized by Isaac's Foundation to go towards research at the U of M Children's Cancer Center. It was supposed to be very hot, but thankfully it was overcast with a slight breeze. Tyler had been chosen to be 1 of 7 honored children. Some had lost their battle, some still in the hospital. We did meet many cancer families and it was nice to talk and share experiences. There were a couple I'd been following on Caringbridge and hadn't gotten a chance to meet yet. Our stop was 2 miles up the trail. I had posters and a slideshow, plus the granola bars and ice pops to give out. It was great sharing his story and educating people about cancer and how it affects families. I learned quite a bit too.

We had someone come help who is s a Pediatric nurse. It was great talking to her. She has experience with Autisic kids too, so we talked some about that also. She brought her small dog, which Dawson loved. He held the leash and followed it around. He was petting the dog and after about 20 minutes he was leading it around, saying "Dawson's doggie!". It was so cute. I wish we could have a dog, but between me and Dawson's allergies and Tyler's restrictions, I just don't see it happening anytime soon. Dawson did great, he greeted people and opened coolers for them to get drinks. The only issue I had with him was the bikes. When people stopped, especially young children, he wanted to get on their bikes. He went from looking at them, to suddenly hopping on and riding one several feet as I ran to catch up! I hadn't expected that at all, the last time I worked with him on it, in April, he wasn't able to pedal! So exciting, I'll have to get him one once we're out. Everyone thought Gabriel was so adorable all sprawled out taking a nap on a blanket on the grass. He kept smiling in his sleep, I think he was enjoying the fresh air.

After the run we drove back to the park and talked to more families and had some snacks. They had a bouncy house, which Dawson loved. He was good to watch out for the other children. He's really improving on that. He used to not acklowledge them at all, stepping right over people's toys, taking things, etc. Now he'll actually play next to them. There was a big hand water pump there that the kids were playing with. He went and stuck his head right under it! Shocked me, he hates water on his head! He was laughing and looking right at the other kids as they played and stood around the water. I just watched in amazement, not even caring how wet he gets, if he's playing with other kids! I had extra shirts with, thankfully!

We went home and got Dan, went out to eat at Subway. I was probably pushing my luck, but it'd been such a great day with so many break-throughs, I just had to try! Dawson did very good sitting next to me, though he did climb over the booth once. There's rarely anyone else at the subway by our place since we're on the edge of town, so if we're going to try eating out, we go there! Afterward we went to Lake George and walked around the lake. We did that the night before we had to bring Tyler to the hospital after his relapse too, so it brought back some memories, but we had a good time. Dawson liked seeing the ducks. Then we played at the park there and Dawson surprised me once again! He went over to the splash pad, which he's always been very afraid of. He doesn't mind water if it's a standing puddle, but he doesn't like showers or other spraying water. It's just too unpredictable for him or something. So he went over and splashed in the water on the ground, then he went over and let some spray hit him and before we knew it, he was stepping on the water sprays to get them to stop, and standing under the spraying water. He kept saying "owie!" "wet!" I had told him before that the rain was just wet and it's ok to be wet, but he's still a bit confused between the 2, which is a pretty common sensory issue.

We got him a treat at DQ also. He doesn't get much ice cream, there really isn't a point in an air conditioned hospital! So he loved that. He finished the day learning some math on Starfall.com. We discovered new areas on there and he loves the bowling, which works on beginning subtraction.

I got a lot done at home! I got more forms filled out, just to get yet another packet in the mail from Children's Psychology. I got the entire kitchen and dining room cleaned and unpacked, plus a couple boxes in the living room. It's looking so much better! Dan did some work on the car. I was excited to get some emails back from different Autism and therapy places. The one thought our situation was pretty intense and said they had no clue how I would make it to the amount of therapy they suggest. Apparently ABA therapy is usually about 40 hours per week, and they only do clinic hours. Another place said because of our situation, they'd try to get us services ASAP and they'd come to us. YAY! They also do the full Autism diagnosis process, which we've been on the list for quite a while in St. Cloud. So hopefully that will be done so we can move on. With each year that passes, the window of opportunity for re-learning behaviors gets smaller, so I really want to do this soon to give him the best chance possible.