It's the not knowing that gets you...

[Mica]

I'm feeling a bit overwhelmed, today. It's the not knowing... I adjust to each new facet of Aria's injury as I learn about it. I feel anger, grieve the limitation, then figure out how to best help her overcome it with a positive attitude.

But some days, it's just overwhelming. Some days I wonder, how do you put your precious child's injury into a healthy perspective, when you don't even really know what the injury is, yet? There are just so many unanswered questions... more, even, because BOTH of her arms are injured.

Will Aria be able to wash her own hair? I don't know. Pull up her own pants? I don't know. Oh, there are just so many unanswered questions.

I know I must be strong for Aria. And, I know she will take her cues about how to feel about her injury from watching me - and I'd cut off my own arm before I made her feel bad about herself. My child will be raised in a supportive, "can-do" environment.

Some days, I just wish I had a crystal ball so I could see what things we really have to worry about, and what things we are simply waiting for.

Had to vent...

[Elissa :)]

I completely understand. I've never stopped to think how difficult it must be for a mother, being that I am the daughter. My parents raised me with a can do attitude. Unfortunately, I never really talked about my injury to any one, I wish I did. Talk to your daughter. I think it's ok to get angry and to get sad. I would get frustrated b/c I couldn't put my hair in a pony tail as a child when my friends could, but I learned that if I knelt down at the sink and used the ledge to make my arms almost equal height, that I could do it. In fact, I still do that today. Has your daughter met anyone with OBPI? I never have and that might help. Honestly, I sometimes still get frustrated that I have to do things "one armed" when everyone else gets two, but whatcha gonna do? My mother told me instead of asking God, why me, ask, why Not me. Your daughter is fortunate to have such a caring mother. Most days, I look at it as a blessing rather than a hindrance. I wish you luck and will keep the both of you in my prayers.

Elissa

[Mica]

Thank you, Elissa! That was a very kind response!!!

Aria just turned 1 on August 12th, but MAN I'm glad she'll have this place when she gets older! (I'm glad I have this place, now!!!)

I'm somewhat comforted knowing she will never remember the time in her life when her injury was the most extensive. But, when I watch her struggle and cry because she can't do something other babies do so easily, the very core of me screams. I'd give up anything for this to have happened to me and not her.

I appreciate your kind words.

[marieke]

Mica,
When Aria is old enough I plan on meeting her and YOU! I want to hug her and cuddle her now!!! She is the cutest thing.. well, her and Stella and all the other babies I consider to be mine too, LOL.

Things are uncertain as she has a bilatelral injury and who knows what she will regain in the end, It is unpredictable and hard to imagine. I know, I am not the mom but the one with BPI, but I see what my mom went through... and still does to some extent.

Love her, support her, tell her she is great (cause she is) and she will show you just how tough and strong she can be. There will be times that are hard, moments that are uncertain, but that will not stop her or you from pushing along and living to the fullest of her capabilities.

Ok, enough from me for now!

HUGS!
Marieke (31, LOBPI)

[hope16_05]

The not knowing does get to you! It still gets me! Like am I going to be able the physically be an OT? Well, I wont know until I try. I just got drilled about that today as I went to vocational rehab to see if I can get help paying for college since I cant get help with medical bills. So many peopke doubt our abilities, it is hard to not be on their side and doubt your abilities too. but it can be done. The guy had be feeling like what am I trying to get myself into rather than excited to get into OT. I know mentally I can be an OT but I still wonder about physically, and again I wont know until I try. I guess if I cant be a good clinical OT then I will just have to teach it instead. The now knowing will always be there. I wish at times we could all have that crystal ball but that would take away some of the great things in life! Those little things that Aria will accomplish that will mean the world to her that many other people dont even think twice about. Things as simple as brushing her teeth and washing her face. When she does these things (especially since she is Bilateral OBPI) she will have the best sense on accomplishment and your job is to embrace that! Let her show you with a glow in her eyes and a smile that goes from ear to ear every single little thing that will mean the world to her. If you had the crystal ball, it would reck the suprise.
"Life is like a box of chocolates, you never know what your gonna get" Thats a great quote that is oh so true! I still dont know what I am going to get, maybe more surgery, maybe not. might be able to lift my arm higher, might not. I dont know but if it happens I will be smiling ear to ear! If I already knew it was going to happen, it wouldnt mean very much to me.

That got kinda long, sorry! But The point is, not knowing is not always a bad thing!

Hope tomorrow is a better day!
Hugs,
Amy 20 years old ROBPI from MN
(another one that cant wait to meet both you and little Aria!)

[Carolyn J]

Dear Mica,
If you aren't coming to Camp this time, please please come to our next one in 2009. It wil be life enhancing, very healing for both you anf Aria to meet other so sucessful individuals, both children, teens and adults.

Just talking openly to Aria and when she is able to tell you where she hurts and always listening atentively will help you both. I never had that luxury, but it made me a stronger independent person who is determined to find a way to do anything I want to do. Aria wil be the same and will surprise you at what she can accomplish.

I want to hug you both too!!

Carolyn J

[Mica]

You guys are so amazingly wonderful...

Thank you!

[brandonsmom]

Mica,
I now exactly what you are going through, but I Can tel you that no matter what your child "CAN and WILL DO" I had the same fears of Brandon, but they were all for nothing. Even if he compensates a little, I don't care. Today, he tried out for the Flag Football team at school, I went shopping, couldn't stand to watch....but all went well. There are things that they said brandon woudn't do, but he proved them all wrong. Enjoy your child, I know I ost two years of Brandon's life dwelling...on what he couldn't do instead of what a pleasure he was and still is, now more than ever. You now, he had taught me so much. When people said to me when he was little, "You know that this happened for a reason" I Wanted to scream at the top of my lungs, but now I know that it did apen for a reason, because I needed someone to teach me how to STOP and smell the roses. GAyle mom of Brandon 9 ROBPI

[bfaithda]

Mica,
I have to say I feel your pain and I too ask my self the same questions. Aria's injury is more severe than Brayden's being in both arms. Brayden's left arm is pretty severe though. I was in a big denial on what I was up against and still am sometimes. Until I found this message board, and read what people go through and what I don't look forward to going through with Brayden.

But, I have learned to take each day one step at a time and enjoy each moment with him. God has blessed me with him for a reason. I can't thank the lord enough for him.

Hang in there things have a away of working thems self out just not when we want them too, it is when we least expect it!!
Bridget Brayden's Mom (LOBPI) 3months
Kentucky

[Carolyn J]

Mica and Gayle,
This topic was popular among all groups at Camp and probably will be forever until YOU get to meet the BPI teens and "20-30 somethings" in person and see how awesome and independent everyone is. Even the 4-5 year olds taught me something about "Can Do".

I sure missed the opportuniy to hug you both and Aria and "My" Brandon. Start saving for Florida Camp 2009!

HUGS,
Carolyn J