United Brachial Plexus Network, Inc.

I was just wonder how many other parents of a BPI child are having as hard of a time as I. I know that all of you sound so strong and confident. I have major anxiety and have to take meds. now for it. I also can hardly read about BPI's. I want so badly to learn as much as possible but I can hardly stomach most of it. I know that I am not alone. Just wondering how others deal with it, and does it get easier? My daughter is 15 mo. she has had primary and Mod Quad. 3rd surgery coming up in March. Thanks for listening.

Ashley - it's been like a rollercoaster. Some days are really great and some days are really bad. I think the really tough time is when they are so little and all the surgical decisions have to be made and the post rehab stuff and juggling everything and dealing with the emotions. I notice that when we are not signed up for an impending surgery, things seem to go smoother around here and in my brain and heart. There is so much to process...but people told me that it would get better in time and I think they are right about it...life at some point has to go on and we can't continue to eat ourselves up alive over it. I think these shifts come when we start seeing our children have successes in school, in extra curricular activities, etc. It's true what Mary says to enjoy your little one before they are all grown up - that time happens way too fast. I have a 21 year old and I have no clue how that happened!

I have been up since 4 am this morning and have soooo much on my mind. Stressed about an impending surgery. So much therapy, so much to do, so little time. Sometimes for me it is a bit too much.

I think some days are better than others and that just comes with this injury. It is very demanding and hard to escape. And the emotions can really get to you. Glad you are taking care of yourself. Do all that you can. I think the first few years are the hardest and that things will get better. Find ways to enjoy these precious times and try to create moments where you can let the injury go. Play with your baby, go to the park, take pictures (which I didn't do enough of since I was so sad and didn't want the baby to have to see videos of the paralyzed arm, etc). Hang in there, when you get through all these surgeries and your child is doing better you will feel better. Find what brings you a little peace and sanity, and MAKE time to do it!

Hi Ashley, at times we all feel overwhelmed, no one knows anything for sure. That's one of the reasons why this message board is so wonderful...........you can ask questions and get honest answers which are based on knowledge gained through experience! Keep asking those questions, and doing research, you are doing a great job, remember some days are better than others and we are here to support each other.

Good luck to you!

Lenni

Girl I feel your pain. I too had to take meds from the depression I was feeling. Although I was too proud to do it at first, finally after 15 months I went to a doctor to get on them. Some days are easier then others, Sabrina's strength helps me. She is one determined little cookie. Feel free to email if you need an ear to talk to.
Dana
sleeplessinfl2000@yahoo.com
Good luck

It is very hard, and it is a roller coaster. When I see my daughter struggle with certain movements my eyes well up. When I see her one side look so visibly different from her other side I feel a lump in my throat. I get through each day believing that I have been chosen to manage her injury as best I can, until my daughter can take ownership of her injury for herself. That attitude gets me to fight for my daughter's rights, do another set of ROMs, go to all the therapy sessions with a smile, and to accept our fate as best I can.

ups and downs like every one has said before. sometimes it is overwhelming, i am on the meds too, and have been since right before marlin's second surgery (mod quad) they help but the daily grind can get to you. it seems like for me at least things come in stages. 1 stage, denial the injury is going to heal itself stage 2 admitting that its not and learning about all of the options you have to explore. blame and anger re the injury. stage 3 exhaustion but also getting into a routine with therapy. and sometimes going about a normal life if you can believe that!!! it is a long road and don't ever feel that when you can't handle it you are alone, we all feel it at times most especially in the beginning when there is so much going on. pat yourself on the back you have made it through two big hurdles and are hanging in there!!!

This is really interesting! i wonder if you will all say the same thing when ur children are 17. My mum never mentioned my arm(as most of you know) until i wanted to see a doctor about it and a few weeks ago i over heard her speakin to my dad about how scared she was about me goin to the hospital and that she got almost no sleep bcos she kept thinking about my birth and my life and so. i wasnt upset hearing this...more shocked bcos she looks so brave and is kinda alrite talkin about it now but she must feel pain of sum sort if she wakes up during the nite thinkink about it!

Michelle x

Just like every injury is diffrent, everyone handles it in a different way. It has been hard on our marriage. It has caused me to switch jobs. The time involved in therapy has made me loos touch with friends. So much has changed. I have good days and bad. I cry for no appearant reason. We had planned on having a large family, but now we are not sure if we will have anymore kids. It is so depressing sometimes. OTher times I fly off in a fit of rage. I do not trust doctors and have an even lower opinion of lawyers. It is hard but you find your own way to manage.