You know...there is hope!

[BrookesMom]

I have not been on this board for a few years. I first want to thank UBPN and Francine Litz because without you I would have been lost in my moments if despair.

My baby Brooke was born with RBPI. Her pediatrician barely knew what BPI was and the hospital staff was worse (and scared). After my release from the hospital I ran home, and found this board.

Our insurance company referred us to an adult BPI specialist in California who we rejected after one visit. We would mortgage our house if need be - but we would not have someone do surgery on our baby who was not a pediatric BPI specialist.

We traveled across country from Las Vegas with baby Brooke. We were petrified, our pediatrician told us Brooke may never be able to use her arm, write, play with barbies (ok the last one was my fear).

We interviewed many BPI specialists and wound up having the surgery in NY. Dr. Abbott found scar tissue on the nerve and a minor tear. After Brooke's release from the NICU we were placed in a room on the pediatric floor.

We walked in and there was a little girl, with a turbon on her head, pictures of her family taped to the television; she was dying of cancer.

That moment changed our lives forever. Brooke was orthopedic, neurological, this little girl was terminal. How quickly things were put into perspective.

Brooke has gone through many years of physical therapy. She has a 6 inch scar on her neck, she runs with her arm bent - but she runs real fast. She writes, very nicely with her left hand, although in my opinion she would have been right handed. Brooke knows she has BPI and calls her arm righty. Her teachers know too. The truth is though, no one else pays attention to it or even notices it.

To us it is no big deal - yeah, righty is a little bent and not as strong, but Brooke is healthy and alive and smiling, has lots of friends and is without a doubt a 100% normal 6yo.

Through all of this, we learned to be strong, make wise decisions, be positive and be an advocate. I will always remember the little girl in NY. If it were not for that little girl we would have been victims of Brooke's disability.

[F-Litz]

I'm so glad for you. This is how I feel, too, although it took me MANY years to get to this point. We've finally come to accept Maia's arm to be just the way it is.

Life is short and we never know what the next day will bring. Hug and kiss your kids every night.

Thanks so much for sharing this.
-francine

[Carolyn J]

I am so happy for you BrookesMom that you got it. Hope is what keeps us all going. Thank You for sharing and reminding me--do what I can and keep in the day.

It's taken me too long to learn this.
Carolyn J
LOBPI/70

[Kath]

Cheryl
I'm so glad you posted your story. Sometimes I feel so bad for parents who feel as if their child's life is destroyed by our injury. I know my Mom was so grateful I was alive and it was because she lost other children to "birth trauma". I guess she had things in perspective right away once I survived...

I think I'm normal, I have three children and 5 grandchildren. All of the kids understand that there are somethings I can't do... Like play patty cake or hold them up in the Air... But they know I can cuddle, kiss, sing songs, draw, teach them how to use clay and make silly jokes with them. That is really all that is important.

As for the sensory things... well my husband still laughs at some of them but hey after 43 years he is use to them.

I hope new parents reading your post will feel empowered and not let this injury own their lives.

Kath robpi/adult

[Cole's Mommy]

You make me cry tears of joy. When my son was born, April 30th (07), I internally and externally mourned for many months. I am also a teacher. In December, on Christmas Day, one of my student's sisters passed away (2 weeks before her 2nd birthday)due to rsv. I am so sorry that it took that awful pain for others to help me to learn to celebrate every precious/wonderful moment that I have. (Not to minimize my feelings...but my goodness, Cole has shown me how amazing life is.) At this point in his life...Cole seems absolutely joyous and he continues to overcome this injury. It is inspiring how much our little ones can be our heroes! Thank you for sharing! Nicole

[mamaofsix]

Thank you for sharing. I share similar feelings. During our weekly PT/OT visits at the Children's Hospital I see families that are struggling with children that are terminal. It breaks my heart. I am saddened that my son's injury was preventable, but I am thankful that it is not so much more. We will have obstacles to overcome in the upcoming years, and I so wish that he didn't have to go through them, but I am enjoying all the smiles, giggles, and triumphs! This will no doubt be a journey, but we are determined to also enjoy sightseeing on the way!