Summertime

Things have been tough lately. I go through periods of time when I am so strong... never cry and just go on with life like nothing is wrong - enjoying the kids - living life. Then one day something will happen - nothing major - maybe just something small - and it knocks you right into reality. For instance, I may see a parent taking his or her two chidren up to Rita's to get some water ice. Both kids standing there so patiently waiting to order. And I think - we cant even take our kids up to the water ice stand b/c it is on a busy highway and one of them will try to run in the road or one of them will knock some other kid over or just generally cause a big scene. What people dont realize is it isn't always the big things that you cant do that really hurt but the little things that most people completely take for granite. And why wouldn't they...they dont know any different? I am just at the point now where I just think this all sucks! You can't help but think what the hell did we do to deserve this! Marriage is hard enough with out having to deal with caring for two special needs children and all teh strains that puts on your relationship as well as your relationships with other people as well. You do really find out who your true friends are though. I can say we are blessed to have the supportive friends and famiy we have. Well Ryan has been starting to talk less and less. He still says things from time to time - mostly repeating but I am afraid there isn't much cognition there. Brayden does so well with cognition - he understands way more than Ryan ever did. But, he really has never had much vocabulary. They are the sweetest most lovable boys - they love their family and they love their friends. They both love school which makes working easier knowing they are cared for and happy. As for good stuff, we are heading to the beach for a week which is always fun for the boys. WE are going to Disney in October for Ryan's Make A Wish trip. We are excited for that as well. Ta ta for now...

Difficult

Spring has been a little difficult for me. Everyone is talking about their kids little league games and plans for summer camp and it always hits you like a rock that your kids can't do those things. Sometimes it is just sad to realize that life goes on regardless. Kids will grow up and learn new things and discover new things while our kids lose abilities and forget how to do things they once knew how to do - simple things like counting to 10 or knowing their colors. Also as our kids get older it become more evident that they are "different" from their peers and you feel like you are in a world of your own - and it feels very alone sometimes. I know we are not alone but it still feels like it at times. Despite my little funk, the boys are doing well for the most part. Brayden had an echocardigram and showed some mild thickening but doctor said that was normal for a child with Sanfilippo at this stage and it isn't affecting his health in any way. Ryan still needs to have an echo done and we are concerned because he will likely need to be sedated. Brayden is a very lively child with quite the personality. He unfortunately has very few understandable words. He however seems to have a higher cognition at this age than his brother did (while Ryan had better speech). Brayden often does things that "normal" 3 years olds would do and you think to yourself - maybe the doctors were wrong and got his diagnosis wrong... but we know that is not true. Ryan is doing well. He seems to be getting stiff in his legs at times but he is still very active - running, swinging on the swings, jumping on trampoline so he is doing well. Well - that is my update for now!

It's Me!

I know I have been bad about updating my blog! Life seems extra busy lately! The boys are doing well. We dealt with the normal winter illnesses but besides that they are currently in good health. Ryan is doing great in kindergarten. I can't believe he is almost finished with the school year! Then he will be a first grader :( I am so proud of him - everyone who meets him just loves him.... he has become quite the little celebrity at his elementary school - Brandywood Elementary. The teachers, staff and parents are putting a team together for our 5K in June and are even getting T-shirts made. That means so much to us to know they love Ryan that much! Brayden is doing well also. He is a fiesty one! He keeps us on our toes! For all the challenges we face, and for all the times I am tired or stressed and think "why me?" or "why them?" I turn around and see one of them smiling with those beautiful dimples and I think - man I am lucky to have such wonderful children in my life - so full of innocence and love and wonder. At this point it is hard to imagine my life without them - and I dont even want to think about that so most days, I don't. I prefer to stay active and focused on positive things b/c otherwise I would be in a straight jacket in a home for unstable people. SO, I choose to remain stable (well at least somewhat LOL!)