United Brachial Plexus Network, Inc.

I am not sure why I am having such a difficult time dealing Emily's upcoming surgery this time. After all this is number 3 and I would think - I'v been here before and I know to expect - but that's not holding true. I don't know if it's that she is older (4yr.) and more aware of what going on, that she is aware of normal and not normal pain, that this will probably make her realize that having an injured arm is not the normal that every kid goes through. Maybe the fact that this the 3rd and I know there are more on the horizon and wonder when will we be able to quit taking our baby to surgery? I picked up a gift bag and card from her class yesterday and fought back an emotional breakdown the entire time I was there. For her, I remain calm and collected on the outside, but the inside is pure turmoil. This is mostly a vent and trying to sort out my emotions, thanks for listening.

Julie Wolfgram

Jallie,

I know what you mean. Kelsey is 5, and this will be her 4th surgery. She is scheduled for caps in April. I was hoping we would bypass this one. The news really hit me hard. We, too, know that Kelsey is up for more surgery. Dr. Nath had planned it out for us. Intercostal or C-7 transfer, and then the gracillis transfer. So when the caps came up, I was floored. I haven't talked to Kelsey about it yet, as I need to be ready, and don't want to give her too much time to think about it. She is a real trooper. We have her TES evaluations closer to home, but still 3 hours away. We were driving there for our last visit and I asked her if she wanted to stop for lunch. She told me that she would wait and have lunch in her bed. She thought she was going for more surgery! She just accepts it as a fact of life, which is really sad to me.

Hang in there! You will get through this one, just as the last 2. Our thoughts are with you.

As much as both of you need support now, I want to tell you that just you posting your feelings has supported me so much. I've always wondered if I take my 'feelings' out of proportion - does everyone else feel like I do or are we just so sensitive.

This is hard. It's hard just getting your child to a surgery. But then to know that it's just another in a series...gosh. And then to fully understand the splinted time and how stressful that time is. And then the transitioning and then the painful rehab. And then we rehash the whole reason why. IT'S HARD IT'S HARD IT'S HARD!!!!!

Keep on talking about it. Keep on sharing your feelings with us and know that there are SO MANY people on here who know exactly what you are feeling and have been through it or are going through it as the same time. When you cry, there are many of us crying at the same time as you.

This is so damn hard and I have no clue why this has happened to all of us and our children!!

I will pray for both of you and your children to get through this time with more ease.

big circle hug!!
francine

Francine,
I don't think anybody here takes their feelings out of proportion because they're honest feelings. I agree that we're very sensitive because it involves our children.

This board is a good place because it makes it a little easier knowing you can come here and there are people who understand and won't down play what you're feeling.

Unfortunately our children are becoming a statistic to show how birthing professionals need to re-evaluate their training.

I think one of the hardest things to accept (for me anyway) was my son's arm was fine before he was born. And now it's a fight for every bit of movement.

Someone had once said "to change history would change the person my child will grow up to be" When I start feeling down about things I keep that in the back of my head. It helps me out a lot.

I am so grateful for this board. I finally feel like someone understands, and we don't pity each other, which seems to be a common reaction from those who we meet on the street or in the malls.

There is another quote that I always think of when I am trying to decide what is right and how far I should go with things. It is by Anias Nin and it states "And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom." We all are pained by our decisions, and saddened that we have to make them. But we all have to do what is best for our children, and sometimes that is taking the risk of surgery or trying a new form of treatment. Francine- I always feel like there is SOME reason in this universe that I was chosen to have a child with OBPI. We are all strong, and see things so much more differently than others whose children don't have to struggle to carry a tray, or get dressed in the morning. As Kelsey (and any of our kids) get older and head off to school, I realize what an impact they have the opportunity to make on other children. I know that Kelsey is amazing in her abilities, and she compensates for what she can't do. I think we were given the chance to celebrate the little things in life the minute our children were born. How many other people do you know that would jump up and down and scream if their child gained 3 degrees of motion or actually crawled (lol, lol)?!

Believe me, we're all hear for support and it's a place where it's safe to let go. I know Michaela will have more surgery and all the emotions I've had with this one really suprised me. Hang in there! We have to keep strong in front of our kids but here we can be heard and understood with our hair down so to speak. Good Luck! LeeAnne