A good and sad day
amajane
member
Yesterday we had our first visit to Seattle Children's Hospital for an appointment with cardio and audiology. I won't bore you with the details (they're in my blog) but I will say that I was very impressed by the hospital and the care that Marley received.
And is it weird that I feel strangely comfortable in a hospital surrounded by other kids with health issues? It felt like such a safe place and I saw kids who had everything from a ?twisted ankle to a bald child with an NG tube down it's nose. It was one of the few public places I felt okay to have a SNC in. No one stared, judged or bothered us.
I felt pretty good until I walked out of the hospital and found myself walking behind a young woman who was clearly mentally retarded. My heart sank. I don't know what it is, but it is so painful for me to see mentally retarded adults. It's like putting up a mirror in front of Marley and flash fowarding 18 years into the future.
I know Marley will have some degree of retardation. I recognize it already in her developmental delays. But since she's a baby I can even pretend it doesn't exist. Hey, she's just a cute, little baby. But when I see mentally retarded adults I feel like I'm violently shaken back to reality. And then I start stressing about what life will be like for her when she's grown and I begin to grieve all over again.
Anyway, that's where I am right now. Good day but kind of sad too.
Re: A good and sad day
It is only natural to look forward and worry about the future for your daughter. I can only imagine how hard that must be to have that constant reality check. Although easier said than done, I think you have to continue doing as you are = living for the day, cherishing your dd, doing amazing things for her, getting the help she needs with therapy and drs etc... You obviously work a lot with her and are a proud attentive parent. That will help your daughter so much! You will help her to reach her very best- whereever that may be. And in time you will be ok with that- because you will be filled with such pride and amazement at what your dd will accomplish and overcome in her life!!!
My childhood neighbor, who is now 28 is moderately retarded. But, he has a great life!! He has a job, he is picked up every day by easter seals and they take him there which gives him independence from mom and dad. He loves his job and is great at it. He is very friendly and has many friends and gets together with friends weekly. He is very involved in the community as well (through various organizations) - I think he has more of a social life than me!! He is where he is bc his parents didn't give up on him, they pushed him, they challenged him, and believed in him- just as you do you daughter! More than anything- he is the happiest person I have ever met in my entire life. He may have certain limitations but he has compensated in so many wonderful ways.
Your dd is so lucky to have such a dedicated mommy- that wil help her in so so many ways!! Its normal to have sad days and grief filled days-- yoiu have a lot on your plate! I wish you the best of luck!!!
a friend of mine takes her daughter to the seattle children's hospital and loves it too!
i feel the same way about ryan. ?i just realized why stress about stuff like that when you really don't know what your child is going to be like in 20 years. ?honestly, i feel like i'm going to just be so proud of my son and all his accomplishments that i'm not going to feel sorry for him what-so-ever. ?i think as a parent all i wish for in ryan is for him to be happy and that's all that matters. hope you have a better day tomorrow!
BFP 3/9/12 Natural M/C 4/11/12
I'm glad the hospital turned out great!
I find it hard not to be crippled by fear of the future too. I even try to tell myself that Isaac won't be the typical kid with his diagnosis, that he won't have any retardation. But I just have to keep thinking that no matter what its going to be just fine. no matter what.
I'm sorry you have to go through all of this. I'm sorry it has to be so hard.