Well, some of you might have read my earlier post and I am happy to say that today was a really good day in our Home!
Both, Connor & Alexander, had a wonderful time playing together and we even got some school time in today. One of the many wonderful things about having my parents here is that it is easy getting some German Language skills back into the boys. Connor was feeling great most of the day and I knew when his mood was dropping that it was time for his Tylenol but the funniest part today was Connor reminding me when it was time for all his 'big' meds as he calls it.
So really we had a fun and relaxing day at home playing games and coloring. We did have one scheduled event today however and this was about meeting Connor's PT for the first time and her assessing Connor. My luck really turned when I knew she was kind and Connor right away felt comfortable with her. Gosh how much we needed this is hard to put into words :)
Another huge highlight for Connor was getting this sweet card and box from our ultimate Angel, Miss Olga Byrnes, the one that gave us the biggest gift ever five years ago to the date. Five years ago we were in Khabarovsk, Russia, on our second trip seeing our boys, but this time we were officially granted parenting rights by the Russian Courts. How can I put into words what this day meant for us? Connor and Alexander were our babies from the first time we laid eyes on them six month earlier and I never been happier since then. They are my life, they mean the world to me and if I ever did something right in my life then it was being rewarded with the privilege to be their Mom and to be a part of their life's. I know every parent must feel this way but there is no question that they are beautiful, smart, funny, handsome and just the most amazing boys I ever met. They did not have an easy start in life from the get go. Connor and Alexander were born between the 33rd and 34th week at 3.2 lbs each. They spend the first four months in the hospital before they were moved to the Baby Home #2 in Khabarovsk. How grateful we will always be to this Baby Home for giving them a most wonderful start in life. Maybe they did not have much money and resources but this Home was filled with Love and Caring people. It was a happy place to enter and all the children we met looked happy and well taken care of.
Connor and Alexander always had some medical handicaps from the get go. They both have tethered Spinal Cords, for which they had surgeries at the Children's Hospital in Dallas once we got home. We loved the Children's Hospital in Dallas and will always be grateful to Dr. Angela Price, the Neurosurgeon who performed the surgery first on Alexander and then almost a year later on Connor.
Both of our boys have just one kidney, which is not an issue if it works right but of course now has us worried at times knowing how many medications Connor gets and about the possible side effects.
Connor has been such a trooper through all of this because he is not new to challenges and this is why I got so heart broken when he was first diagnosed with JDM. I kept asking why him? How much do our boys have to deal with in their young life? I truly mean it from my heart that for both Connor and Alexander I would give my life in a heart beat if I knew it would secure and safe theirs. I wish at nights that it was me that had been diagnosed with JDM, but those are the cards we are dealt with and we will fight for them as we have from the first time we laid eyes on them.
I know I am not alone asking for the best for my boys. All of you parents are doing the same for your children. We are the only true Advocates they have and I will make myself heard in every instance when I know I can change a bad outcome and I will not be discouraged ever to ask for only the best and never accept anything but the best.....
Love to all of you!
R A C A
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