If there is one thing I can say (but then you know I always have more to say then one thing :) then it is that we had a very busy last three days.
On Thursday, after Connor had his Solumedrol and Methrotrexate Infusion, the boys and I thought we go for a little ride on the 4-Wheeler so Apple and Tasha could get some exercise. We ended up at our DG (Decomposed Granite) Pit and the boys had fun playing in the dirt and playing with the Girls. It is amazing to think that Apple and Tasha and one year of age are out weighing the boys now by over 20 lbs. I can promise you however that this does not intimidate Connor or Alexander who handle the dogs without a care in the world :)
So and yesterday, Connor and Alexander had their first official Play-Date in 6 months! We spend almost all day outside and it went really well. Alexander was so happy and excited to have friends here who he could run with, Jump on the Trampoline with and go on a Hike with. Connor tried to keep up as good as he could but of course had the handicap of not being allowed on the Trampoline. There was this split second of consideration for me to make the Trampoline off limits for all the kids but as I said that thought lasted for less then a second. This was a time that I wanted Alexander to enjoy and so many sacrifices have been made by him in order to accommodate Connor. Connor of course was sad a few times until Papa came home and then his day got another huge lift because he clued himself to Ron who then took the time to take him for a long ride on the 4-Wheeler while the 5 of us went for a small hike. So I am very grateful to Caroline, my wonderful friend, for bringing over her boys and also giving me a wonderful Girl Time. I think we talked almost non-stop for about 4 hours... :)
Well if you are a Mom you also know that this day yesterday paid of extremely well because our boys were asleep in a heartbeat when we put them to bed at 8 PM :)
I have to mention also a simple gift you can give one of your children if you have twins or multiples. When you have Multiples most of the time you put your children to bed at the same time and two days ago Connor was so tired from his infusions and being out in the fresh air afterwards that he fell asleep on the sofa around 7:45 PM. Ron carried him to bed and when Alexander got himself ready to go to bed Ron told him that he could stay up late. The face he made and the 'Thank You's' and Kisses we got afterwards were absolutely priceless!!! I actually went to bed at 8:30 PM :) so Ron stayed up with Alexander until Alexander laid down on the sofa to go to sleep. Before he closed his eyes he said to Ron if he could please sleep on the sofa all night. Ron said 'yes' and our son fell asleep with a smile on his face 10 min later. What a peaceful night this was for us and we made our youngest happy at no cost to us at all :)
So and today Connor's little JDM Mentor and Inspiration, Emma, was participating at a 5 K Fun Run Fundraiser at her Elementary School. Emma is 8 years old and has fought a brave battle with JDM since she was 5 years old. I wish I could explain what the last 2 to 3 years were like for our friends but just to put it into perspective that at one point Emma was not walking at all and today she finished a 5 K and then decided to also run the 1 K in which she got second place for the girls ... This is more then amazing!!!! So Emma if you read this or your Mom and Dad please know how proud we are of you!!!!
I also have to mention that Emma is NOT in remission, not in a long haul and she is still on daily medications like Connor. Methrotrxate Injections once a week and gets IVIG once a month.
I wonder at times if those around us that do not have much experience with JDM ever wonder if we as parents are overly dramatic or if they think we try to get attention for us and our child because when you look at our kids and they start to do better then it seems what is the worry?
On the outside, Emma, might look almost as healthy as the next child BUT this is where it is sometimes hard to explain what it takes to get our kids to move and to try to be a part of a 'normal' life. Everyday is a mystery from when your child wakes up to how they will feel, what mood are they in and what will their little bodies be able to do that day. Unless your child is in remission we all start our day with a big collections of Medications. You always have the worry in you mind what might be able to cause another flare up. Before your child leaves the house you make sure they are covered up and are wearing sunscreen (the sun can cause a flare up just like that ... one sunburn and you might be back to zero....
So as always I got sidetracked :) We spend almost the whole day with our friends and we arrived at Emma's school at 9 AM to see the 5 K runners take of at 9:15 AM. While waiting their return we got to spend some time at the playground, which I think shocked Emma's Mom, Dawn, a bit because she was not prepared to see Connor climbing and running :)
We then went to the finish line and got the most beautiful view of Emma running at full speed to the end and then withing about 5 minutes it was decided that not only would Emma run the 1 K as well but now Connor was begging me to run in the 1 K. Alexander of course wanted to run it and I gave in because I figured if I take Connor in his Wheelchair then it would still count for something.
This then taught me once again to never underestimate my boys. We started out the 1 K and while Alexander ran a bit ahead of us I pushed Connor in his wheelchair. All went well until we were about 200 meters out from the Finish Line and it was all in Grass. I told Connor he would have to walk because there was no way I could push the wheelchair and his weight in this grassy area. He walked really well with Alexander on his side until about 30 meters out when they got a clear view of the end. All we had to say was 'run' and they both took off. I am so grateful to Dawn and Kent who ran ahead to take a picture of the finish line :) I of course was a bit behind pushing an empty wheelchair through the grass :)
After the race we all went to our friends house for some yummy Pizza, and treats. The boys thought they hit the jackpot with Popsicles AND Cup Cakes for Dessert :)
I will finish today's Blog on a note of Gratitude. Connor received a package yesterday from a very precious friend of mine, Brenda. Brenda and I met almost 17 years ago in the small town of Rhinelander, Wisconsin. She became my first family away from my own in Germany. She was and is a sister to me. Anyway, to give a bit of background, Brenda has a Brother who is just a bit older then her and they were extremely close as children. When Brian got older he choose to join the Army. He went to fight in Desert Storm and to Brenda and her Families heartbreak he was killed in Iraq. I only know Brian by her telling me about him but she truly brings him alive each time she does so that I feel I know him very well. Yesterday the package arrived and inside was a Star Wars Book that looked well loved. I opened the cover and inside with a child's writing was the name 'Brian Scott'. The following note was attached and I truly hope Brenda won't mind me sharing parts of it:
To Connor,
many Years ago my Parents gave this book to my brother. It got lots of attention because both of us loved Star Wars. I have seen on your Mom's Blog that you love Star Wars, too. So I was thinking there is no one else I would rather give this book to then you, but there is one condition.... You share with your brother like my big brother shared with me. With all my Love, Brenda Scott
Brenda, I know you read my Blog and I hope you realize you had me in tears. Not an easy thing to do!!!! Talk about a gift from the heart ... Love You so much!!! and 'yes' I will keep trying to reach you by phone :)
Hugs,
R A C A
No comments:
Post a Comment