This is frustrating. Whether a disability is known, rare, seen in x number of births,etc,etc. Doctors, specialists,etc. should have a system, a booklet, ANYTHING to give parents when they tell them the news that their child will forever be different. Doctors should not just deliver awful, painful, shocking news and then walk out of the room. Someone in their staff should help you through the process. Someone should tell you where to go....without you having to ask. Someone should say something like "Here are four websites, two support groups, eight families,etc.etc." Why do they assume that you know what to do? They went to med school to help people. Then help...in every way!
Lilah is 6 months old and no one has told us where to go to get our answers, feel understood, feel....normal. My only REAL team that understands has come from the two women I have met through this blog. They are not in the same city, town, or state. They cannot come to my house wrap their arms around me, cry with me, BUT they cry with me via the Internet. AND they get it...without asking all the why questions! (Thank God for Lisa and Kristen)
I have had to research and research... and I am still getting information. I am appalled at this. Does anyone understand how lonely this is? When you don't know who to ask questions? Does anyone understand that I am not a mind reader? I am new to this! Having a child with a disability doesn't come with a handbook, BUT it should. It should be offered. It should be given without someone having to pour their soul out and not get answers.
The past six months has been a roller coaster of emotions. I have cried more in the past six months than I have EVER cried! I have felt more lonely, more isolated, more sad than I thought I ever would. I would have LOVED to have had someone here...in my own town or at least a drive away...that I could sit with, be with, learn from, help, encourage, share, grow,etc.
So...after months of not knowing where to go or what to do....I am finally getting more information. I am getting more help. I am going to find some answers. I am going to help Lilah....anyway I can.
Lilah has her first PT (physical therapy) appointment this Monday. "Why PT?" (Someone has already asked...I am SO tired of ALL of the questions...this is why I write the blog...so I do not have to repeat myself and reopen the same wound 15 times a day. (Please do not ask me why why why about Lilah....I will tell you if I want to. If I do not explain it...I don't want to talk about it!) Because Lilah cannot see like a "normal" baby, she isn't moving as much as a "normal" baby. So, PT will help her with her physical milestones. I am waiting on the vision therapist to call. She is suppose to come...once a week. THAT will be incredible...if it happens. (I pray that they are not as slow to get in touch and stay in touch as I have been told they are.)
I wrote this not just to vent. I wrote this because I hope to help someone else. I pray that some MD is reading this and realizes that the way in which news is delivered can greatly alter the course of treatment. There is a way to make this process easier!! I pray I can help. I pray that Lilah will be an inspiration.
My baby is different......and I love her just the way she is!
5 comments:
You do it... you CAN do it. You can make sure the next mother with a child with a rare condition born in our area does not feel like you did.
You have an amazing heart Katie. I know that by helping others your heart could start to heal!
I agree with MSB....you CAN do it. You can make a change for the better. You can be the one to reach out to those who are feeling lost and confused.
When I found out about Elisabeth's hydrocephalus I discovered that there wasn't much information to be found (just as you are finding with Lilah's condition) When I happened upon little Owen's website
it changed my WHOLE world. I suddenly knew what to expect and what to do. I will FOREVER be grateful to Owen's family. When their son was diagnosed with hydrocephalus they were discouraged at the lack of info and support available. And that is why they started a website. They didn't want future parents of hydro kids to be lost like they were. Like you, they wanted to make a difference.
I look at all the many, MANY contacts I have made across the country with other parents of hydro kids....and it's all because of Owens website. Because of ONE family we all were able to find eathother and conect with one another. It's a miracle, really. And a blessing.
So now you get to reach out and find those parents searching for answers as you were (are). And think of all the people you will touch! Think of all the people that will find comfort and peace when they find YOUR blog and realize that they are not alone.
I just know that you will touch many people in your quest to make sure that people are informed and guided through the process of raising a disabled child. What an amazing woman you are :)
That lonely feeling is tough to bear. I completely understand the urge and emotion of desiring another woman right in your own home town to talk with, cry with, and just completely understand.
I think it's wonderful that you started a blog to chronicle your process of raising your sweet Lilah. I think of the many women I have met through their blogs, doing the same thing. They have become my very dear friends, and even though I still wish at times these ladies lived right in my own town, I feel very content to have found them.
I love to read and found it disturbing that the Parenting section of a bookstore was never useful to me in my situation. The people that were the most useful were the Early Intervention case workers and the other women through their blogs, like Lisa. I realized, doctors and nurses might not even understand how to be helpful in such ways because truly the people that have been the most helpful have been the ones to experience it first-hand. Do you have Lilah enrolled in an Early Intervention program? Each state calls it something different. I think I remember reading somewhere Lilah was evaluated for it. Cayman's case worker through the program was so helpful and supportive. She even had numbers and names of other parents in and near my home town that I could connect with if I desired to. I moved before I had the chance to though, but still, it was comforting to have that source of information to turn to.
Again I have to say how thrilling it is you started this blog. I believe it will help so many others.
Katie,
I found your blog either through Kristen or Lisa's. I have enjoyed reading through some of it and getting to know your family. I, like Lisa and Kristen, am a blessed parent of a sweet baby who just happens to have hydrocephalus. And I too, met them, through Owen's website. And, I, like you, now have 4 children, the last of ours being a very unexpected gift from God as we thought that three was our number :)
And I know how important it is to have connections. Vital, really. I agree, doctors do not give us much information. I, had to find out most everything I know about special needs on the internet and from a fellow friend who happens to have a developmentaly disabled child. And I am in the health care field. It really is frustrating, isn't it? When we recieved our diagnosis, I spent hours reseaching it on the internet.
I agree with Kristen, have you hooked up with your early intervention in your area?? Our services coordinater through early intervention has been a GODSEND for us. She has opened up so many doors for us.
I, too, understand the question, why PT???? Matthew's vision is also poor, however not because of his eyes, but because his brain is unable to interpret what he sees. He, too, has little desire to move. Why would you want to move, roll or reach if you had no motivater to move(you can't see it to be curious about it)??? That's what we think anyway. It makes perfect sense. So in order for him to meet these milestones, we have to work with him EVERY day. I never thought about it like I do now, until we had Matthew. It's frustrating all the same. Our services coordinator through early intervention marvels with the community of support I've recieved through our blog. I truly think it's saved my sanity. No one I knew before I met all these wonderful friends on-line knew how I felt. I just feel blessed. And I'm so glad you've met Kristen and Lisa. I'm glad I've "met" you too.
I hope that as you search, you meet lots of great people along the way. And who knows who will stumble upon your blog and be inspired by you!!
I want to leave my encouragement, too, for trying to organize something for physicians (from your comment left on my blog). There are spotty efforts to do the same thing you want to do. If I can find any online references, I will send them.
Physicians are so very imperfect. I do believe most of them do the best they can and have good intentions.
Now up to the top post...where I will NOT take it personally! Barbara, an old PT
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