my daughter is absolutely perfect! her "perfect" includes a 5' 120 pound body, a left arm that has 20-30% function, a contracture that makes it go backwards, fingers and hand that have tremors, a speech impediment, a partially paralyzed diaphragm, gait and balance issues, sensory integration dysfunction and more..... yep - that's my Maia - my perfect little girl who's my absolute hero. And the best part about it is that she's finally feeling the same perspective of perfection - she loves her body just the way it is. Life couldn't be any better!
I love this Fran!! and it is so true....when Cass was 10 months old (which was not even two years ago) she underwent her nerve graph surgery and all I could think about were the things that I would never see her do....two years later I have gained a much greater understanding of "perfection" and it's not an easy thing to come to grips with.
Cass never ceases to amaze me at the amount she CAN do...Her determination, resiliency and perseverance are an inspiration to me.....and she is only two and half!!! I have come to a place where I have accepted her injury...it was a long, hard road though and I feel for any parent who is just starting it...this is a great place of healing, it was for me anyway....my prayers are with all our BPI kids....
Welcome to the site. I first came on in 2005. My son, Javier was born 5/10/04 and I had gotten info about UBPN for quite some time before I could actually bring myself to look. But all everyone on here has been so helpful. Answering questions, being supportive and generally just knowing what my family is going through. Something you said struck a chord with me. I still have family telling me that one day Javier will be fine. No, he won't. But that is fine. To see him play and interact with others is no less than amazing to me. I wish this didn't happen to my son or anyone else, but it did and it will be okay. As you visit the site and get to know others, you will see and from you own child that these kids can't be stopped or even slowed down. They do it all, just a little different. We see Dr Kozin also, although Javier has primary with nerve grafts (global injury w/ Horner's)done 2/14/05 at Miami Childrens by Dr Bhatia. From surgery over 3 years ago, he is still progressing and showing us his "tricks" as he likes to call them. But, I think the main thing is to not hold them back or treat them any different than you would a non-injured child. At 4 years old Jojo can ties his shoes, write his name and just started school this year and is so proud that he doesn't need help going to the bathroom. His recovery so far, from absolutely no sensation or movement at birth, is elbow flexion and he can feel most of his arm. He can't uet tell the difference between hot and cold, but he knows that it feels different. Like- if he touches something cold, he says it's hot. Anyway- if you have any questions for me or anyone else, feel free to post or email.
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey". There is NO SUCH THING AS A DUMB QUESTION. Sharing helps to Heal. HUGS do too.
Attitude is everything!!! that goes for Moms & Dads, our kids and all of us Adults too. We thrive on Grit & Determination to do anything we want the way we want. ohhh yes, we are perfect and we love our Moms for everything you do.
Hugs all around,
"Gramma Carolyn J
LOBPI/70 and lovin' it
I think it's a natural progression to experience the anger and sadness, etc. You will go through an array of emotions, but you will come out stronger for it.
You will also find a lot of support here, so don't hesitate to ask questions, vent, share progress, etc.
Take care!
Peggy
mom of Emma (ROBPI, 12 years old) and Joel (transient LOBPI, 14 years old)
Kimberly
I have not posted for a long time. I got an e-mail from BPI, and decided to pop in.
You might want to read "WHAT IT IS LIKE LIVING WITH A DISABILITY IN THE FAMILY" written by the oldest of my 3 children. It is my youngest that was injured. The thread is here below
Jill is now age 24, graduated from college suma cum laude, with a double major, Bachelors of ART EDUCATION. She immediately found a job as Jr. High Art Teacher, in the same city as the college she attended. She just started her 2nd year of teaching. She is married to her High School Sweetheart. She and her husband bought a house earlier this year.
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey". There is NO SUCH THING AS A DUMB QUESTION. Sharing helps to Heal. HUGS do too.
GREAT to hear from you again, Angela!
Please keep reminding us about Possibilities that are endless for our OBPI children.
Jill IS awesome woman and your "Journey" with her is once again, inspiring and joyful to me.
It make me remember how I felt when my son was tiny. He's four now and he's been able to do pretty much everything =- he just finds his own way. He's about to have surgery - but if I'd known what I know now, I would have had the surgery when he was two or younger. The earlier you do it, the less there is to correct and the easier it is for the child to deal with it. ( though not for the Mum!) They can do surgery arthrosopically so there's no scar.
We've done lots of therapy and its all helped a great recovery. But it'll be fine, you'll see. Check out some good doctors, like Pearl in LA, Kozin in Philadelphia and Waters and Bae in Boston. There are times when it is really heartbreaking and hard and I really feel for you but you'll get through it. Keep the chocolate handy.
