taking our mind of things

taking our mind of things

Tuesday, February 10, 2015

Good bye 5's

Tonight is the last night my little man will be 5. Tomorrow is HIS day!



A year ago I had so many hopes and dreams for his day! So many things to look forward to in the year to come! He was going to get to start school in the year to come, make friends, and so much more!

Little did I know. At the time, it was just another birthday. A big one, true, but a birthday just the same. We had a small family thing at the bowling ally. It was exciting, and he loved it, but I happily celebrated just another year.

 But the last year showed me so much more in that little man.

I saw courage, as he entered an already established Pre-K program in February and excelled!! I saw compassion as he entered his Kindergarten class and he saw his good friend struggling, and he reached out to help. And I saw courage!! A courage I could only hope to have an ounce of!

Last October there was a point where I honestly cried and thought the worst. I was losing my baby boy! My miracle! My super hero! As I watched his body shutting down and stop responding to his commands. As I sat hopeless as doctor's told me, "We don't know." I didn't know if I'd see my big man blow out his candles on his cake to celebrate turning SIX!!

But you know what, we are here!!

Not only are we here, but he has overcome so many obstacles and showed me so much more.

My little man, MY six year old, has more strength, courage, compassion and persistence than I have ever seen in anyone!

I am certain that he will not look back so fondly on his 5's! Honestly, I could not blame him. I can only hope that when he does, he also remembers all the awesome things he did and accomplished!

* He started a new school with new people! - twice!
* He suffered with a debilitating illness that left him hospitalized and paralyzed.
* He lost the ability to eat
* He retrained his body to walk and hold up his own head.
* He retrained his body to swallow.

He has come so far in just a short period! He may only have been FIVE...but he is a superhero beyond any superhero I have ever read about or watched! And I am proud. Proud to say that that superhero is my baby. No. he is not a baby. He is one tough little man!!

A tough little man who will not let anything keep him down!!

Goodbye 5's. I can't say we'll miss you. Parts we'll look back on fondly, but you were not our favorite year!

Hello 6's!! I can't wait to see what more you bring for my baby! How much further is he going to grow! I don't know if I can get much prouder, but I'm sure I can!

Sunday, February 8, 2015

Looking back

It's funny what stands out when you look back at things. Things that happened prior to this. Before our new normal. Before a mystery illness took my son's life and turned it on his head.

He was an adventurous and smart little boy. Though he had many social-emotional issues, he was a pretty happy boy. He loved to laugh and smile. He loved to just be happy. He found his own happy!

But not only that. He was compassionate. Which is hard for a person suffering from social-emotional problems. He loved helping. But he could tell when someone was struggling like him. Maybe not in the same way, but still struggling.

The first day of school he showed that! I took him to school scared at how it would go. He doesn't do change well. He likes his routine, so how would the switch from our routine to the new routine go. I also worried about him being gone all day. How would he do with the expectations, the social situations and so forth. We walked into his class and he stood in the back with me. I watched him out of the corner of my eye. He took it all in. He watched. He learned what the expectations were going to be. How to "fit" in.

You see, one of John-Douglas's things is that he monitors things and then fits into the mold, so he doesn't stand out. At this time, he could see what the kids were doing and adjusted into the role of being a kid. When we were in the hospital, he saw mainly adults and doctors, so he quickly became a mini-doctor/adult and used words that no 5 year old should know or use. But that was what his environment was teaching him.

But back to that day in September 2014. (Yes, a short month before!) Watching JD, he saw what other kids were doing. But he also noticed the little boy hugging his mother's leg. He looked at me and looked back. He knew the little boy from his Pre-K class the year before. He was puzzled for a minute.

"Mommy, Anthony is upset? I think he's scared?"
"You are probably right baby. This is scary for many kids. It's different."

He let that set in!

"Mommy, I'm going to go talk to him!"

I didn't stop him. I watched! My little boy that has his own internal turmoils on these situations saw an instant that someone was having a harder time then he was.

But what happened next, I see over and over. That little boy, let go of his mother's leg.

Her eyes met mine.

Relief!

She had been just as scared as I had been about sending her little boy to school! She was just as timid and unsure of how her son would do in this new setting, new classroom, and new exception. Both boys came from a class of 6, to a class of 20. A whole new world.

I smiled realizing what my little big boy had done! He had taken away his own issues and put another's needs first!

In the end, that little boy let his mom and dad leave. While parents started filing out of the classroom, I heard in that oh so familiar voice. "Why don't you sit next to me Anthony?" And I ducked out of the classroom before he could see the tears. Not tears because I was scared for him. Not tears because he was struggling. No. These were tears of pride! Tears at how much my baby had grown!

I think the best part of this came on the day that JD got to visit with his class for about 20 minutes prior to returning to school. This same boy scooted right up next to JD to talk books. It was like they never had been separated. And that same look of relief that JD's presence had installed in that boy so long ago, was there again. But this time, JD took this opportunity to not focus on his own faults, but to be the same little boy he had been before! His friend he had helped before, was returning the favor to help him!

Another time that comes to mind and seems to replay often. Almost as if someone was trying to tell me something was going to happen, before we knew it. A little over a week before JD got sick, we were heading to one of the local stores. I noticed a woman and her service dog from a distance. She was standing near the doors to go in. I crossed the parking lot thinking of how best to explain to the kids about this. I spent a lot of time up to this point, explaining that we don't rush dogs, we ask permission to pet and talk, and so forth. But something told me to talk to them a bit more.

So once we crossed over to the sidewalk, to the side of the building. I stopped the 3 of them from going further. I asked if they noticed anything, and JD mentioned the dog wearing a vest. So I got down to their level and explained this dog's importance. I told them that some people have limitations that require them to use the help of others or animals, and that this dog was a service dog. You could tell by the vest. That was to alert people that it was working, and not to approach it. As I don't let them approach other dogs, these dogs are even more important to not disturb. I made it an important conversation, but didn't over do it for the age of the kids. I finished by saying that this was the time where it was important to not ask the owner to pet, but to slowly walk around and get to the door and continue on our day.

So as we headed for the door, the woman stopped us.

"Thank you!"

I was taken aback. She explained that she was very impressed with how I approached the subject, and that she was thankful. Many people don't take the time to explain such things to kids, especially at my little ones ages. She was also impressed at how well they had listened, and how they had done just what I had explained. To give room, and go on, without making eye contact with the dog and make it lose it's focus. It turned out that the dog was actually in training still. So she asked the kids, as long as I was ok, to come on over and see the dog. She explained that something had happened to here to make it harder to use her legs and to constantly get up and get things. So the dog was being trained for support and for getting items she might need of shelves. The kids learned a lot that day, and I saw JD take it all in.

Now as we are looking and reaching out to figure out what is best in terms of a Service Dog for JD, that interaction stands out. It was a very important event in our timeline, that at the time seemed so trivial. I thought I was teaching my kids an important lesson on how to accept differences in others, but now they are that step closer to understanding the use of a dog that is now needed.

Simple events that have made such a huge impact, without seeming so big at its time. I know there are many, and when the time is ready, they too will present themselves. Life's lessons are ever ongoing!


Thursday, February 5, 2015

*minor rant*

Can I just say I really hate this, whatever it is!!

JD used to love being an active kid outdoors. We used to hike all the time, go to zoos and so much more. A few weeks before JD got sick, we went on a 6 mile hike up a 3700 foot mountain. He loved every second of it. Pulling himself up rocks, checking out salamanders, birds and other animals. Now he's becoming a hermit! Because it hurts after a limited time of doing anything that requires him to hold his head up, he doesn't want to really go out and do much. He rarely wants to leave his bedroom. He's becoming addicted to video games, and I hate it! I try to pull him out, but finding the "pushing him" and "pushing him too far", is a hard line.

Add to it, he hates the light!! He used to love playing in the sun. Sunny winter days were his favorite. You know the kind, where the ground is covered in so much white it makes the light even brighter! He could spend hours playing out in the snow. I'd be a frozen popsicle. Summers at the beach were his next favorite. Now if the sun is out he cries that it's hurting his eyes! He refuses to open the curtains in his room. He wants to go out and do things only if it's dark. The museum is cool to him, because it's dim and the light isn't bright. But the zoo is getting to be too much.

Not to mention that the poor boy has such a limited diet. Anything that can get pureed is ok, and any drink thickened. But you know what. Not all food is ok to puree, so we have learned! He just wants a cheeseburger, with pickles, tomatoes, lettuce, mustard and ketchup! So he keeps telling me how to make it. And pizza. A real pizza! Things a normal kid should want! But no! His birthday party is this weekend. His awesome snacks for it... PUDDING. Thinking of some for everyone else to also enjoy, but that's why I planned it at non-meal time. He can't even have a real cake, can't have ice cream! He gets pudding and frosting. I do plan on mashing up some of his cake in pudding, but still. You get my point!

 It's not fair! Why should my kid have to change what he loves for this. I know JD doesn't have it the worst and I shouldn't complain, but I am upset today. Ok. Rant over. I just need to get that out! Now to go find him a cool pair of shades and hope that helps a little bit! Followed by looking up a few new ideas of cool foods to puree!

Wednesday, February 4, 2015

uneventful update

School seems to be going really well. JD is excited every morning to get going!

After having to miss last Wednesday and Thursday due to his rash, and then Monday this week due to the weather; JD was jumping all in to get back to school for Tuesday and this morning!

The rash battled it's way through, and by the end of the weekend he was back to good. Don't get me wrong, I was scoured his little body when he came home Tuesday night to see if he had shown any signs of a reaction. Since we don't know what caused it to begin with. It's so frustrating to say that.

But back to school So he's had a total of 4 days at school since returning. He's loving being with his friends. He tells me what he's covered when he's been in class. Yesterday was ground hog and Ground Hog Day information. Today was about healthy living. Now he's going around the house telling me what I should and shouldn't do to stay healthy. I just hope he didn't take anything specific and form his own hypothesis for why he got sick. Such as he told me today that we should get rid of the tv as watching it can make you sick. I told him he was right it was wrong to watch too much, but that didn't make him sick! That we have always been a very active family. Before getting sick, we would spend every weekend, regardless of season, hiking up in the mountains. A month before onset, we actually completed a 6 mile 3744ft submit of one of the mountains. The kids enjoy LOVE it! We get to see so many animals and spend so much time in nature. So for JD to concern himself with this, I don't want it to become his new focus. He doesn't need to struggle and wonder why he got sick. No one knows. Not even the specialists. So let's not make him deal with it.

His aide tells me that he is doing really well, and she can see him stretching out and trying to do more for himself. They are not seeing many of the behaviors at school, so that is a positive for this mommy. He hasn't had any OT, however. I'm hoping that gets started soon. I'll know more about all of that at our next meeting on Monday.

However, when we get home he is so exhausted that he breaks down. At the store tonight, I mentioned I wasn't going to look at one thing and he just had a melt down. The problem is that when he does that, he stops focusing on his support and collapses. I'm thinking that he is just getting overwhelmed. But he loves it, and I won't be stopping the supporting push from behind.

Not the most eventful update, but that's what is going on in our little world! Better than the steps backward we've been seeing as of late!