United Brachial Plexus Network, Inc. • hard week
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hard week

Posted: Mon Apr 08, 2002 12:57 am
by mom3
hi everyone i just reallly nned some support now and to get som emotion out. last monday and tuesday we went out of town to have our daughter examined by the defendants developmental pediatrician and a psychologist. They were extremely great people and made things really fun for the most part. However I can not seem to get out of this depression afterwords. This always happens to me when something comes up with the case the depositions, this etc. I think it just really makes me reexamine everything again. I sit here now and think how can i go day to day and not even think about how difficult things our for her for us. well i do know why because if we thought about it each day we would be in constant pain. Before I was a mother i had no idea what love really meant as mothers we love so much it actually hurts. Mothers have such an unbelievable desire to protect thier children and deep down I feel as thow I have failed. The truth is I never had a chance. I knew when my daughter was born and she cried nonstop for 3 to 4 months it was not due to colic my baby was in pain! My baby continues to feel pain my baby will feel pain everyday for the rest of her life and thier is not a whole lot I can do about it. I really honestly have not been crying this much again in at least 6 months or so again asking why? why? I just had to vent to you guys because really you guys are the only ones that can understand. I try to talk to members in my family about it but really they don't get it. Most were not even interested in watching the special on 20/20. anyway thanks for listening

Re: hard week

Posted: Mon Apr 08, 2002 8:30 am
by francine
Let's take care of two things first.

(1) This was NOT your fault. Unless you reached inbetween your legs and pulled on your baby's head yourself with excessive traction, this was NOT YOUR FAULT. You trusted someone else to do the job right and THEY failed YOU and your baby!

(2) Pain - your daughter is in pain and the best thing you can do to help her is keep on being proactive about her recovery by taking her to bpi specialists who will help you figure out how to minimize the pain. There are also alternative modalities that will help reduce the pain or help her deal with it a bit better (i.e. acupuncture, massage, hydrotherapy in warm water, Reiki, homeopathy, etc.)

For the emotional part - well wish I could hug you. You're not doing anything that we all haven't done and continue to do. This is a very hard thing and although in time (it's been 4 years for me) things do shift here and there, I don't know if we'll ever stop grieving over this. This sadness and grief that you are feeling - it will come and go - combined with anger or not. For me as we go through new stages and i see what Maia can or cannot do or how she struggles or at surgery time...that's when it hits me the most. I think that counseling would probably be helpful - especially if you find a counselor who has a good understanding of emotions of parents of differently abled children. And if the depression takes you too far down, there's medication you can seek out if you so choose.

We also tend to lose track of ourselves - spending so much time caring for our children and doing the therapies and taking them here and there. Make sure you start getting in some 'me' time so that you can take care of yourself. Get a massage, get some fresh air, take a hike or something.... just do something proactive for yourself that will flourish some positive or inspiring feelings.

Just remember that your daughter loves you unconditionally and always will.

We're here for you too. So glad you shared this. Hope you are feeling better soon.

God Bless,
francine


Re: hard week

Posted: Mon Apr 08, 2002 10:09 am
by CW1992
Thanks for sharing your feelings. I understand them. We all do! I used to get so down too after each Drs appt. I think the appts threw all of my fears for my child right at me over and over. I'd go on and be doing good, and be accepting of what had happened, and then it would be time for another appt to start the emotional ball rolling again. I also understand about the 20/20 episode. I had emailed all of my family and friends - hoping that for once they'd maybe get some sort of an understanding of what happened on the day my daughter was born. I only heard from a few that they had watched it or tried. That hurts. I had sent the awareness packets and the Outreach copies to both sides of the families - never heard back from any of them. I guess they are pretty busy with their own struggles too. I had spent so many years trying to pretend that I was fine, my daughter was fine, and never really even talked much about what we were all going through because we have always lived far away from everyone. Now I am ready to talk and nobody wants to hear it! They don't understand the real impact of the injury. I come here to get the understanding that I need. I hope that today is a better day for you. Christy

Re: hard week

Posted: Mon Apr 08, 2002 11:35 pm
by Elisa
I totally related to what you wrote. I knew my baby was in pain the first 3-4 mths. too and it was NOT colic. It was the most horrible thing. I also know what you mean about things like 20/20. Some people have gotten so much support from family & friends from this injury. I only wish all of us were that fortunate. Sometimes it feels like no one really understands or really even cares about the true extent of our childs injury. It makes it that much harder when you don't feel the support. And gosh how you are so right, how we love so much it hurts. The deep love of a parent for a child - there is nothing like it in the world! I struggle all the time with the overwhelming desire to protect and nurture my baby. This injury makes it so hard because from the very beginning I wasn't able to protect my precious baby, and that hurts. You know I often think about what this injury has taken from my child & our family, but there is one thing it will never touch and that is the love and joy that we share. Our precious little angels will always shine & help guide us through our darkest times! Seems so ironic since they are actually the injured ones, I guess our injured hearts are the hardest to heal....

Re: hard week

Posted: Wed Apr 10, 2002 3:01 am
by tina arvizu
Every tear your daughter did cry you were there to wipe it dry.
"It's not my fault is hard to claim when your child is in such pain.
The fault is not yours to harbor inside. The fault lies with those who like to hide.
Crying at night we all hope you see, that we are all with you on bended knee. This board is here to hold you and help you through the night, through your loves strength your daughter can win this fight.
Your love for your child has put me in a twilight like state, funny how us BPI mothers all can relate. So go to bed MOM3 and get some sleep, nothing can hurt your baby she has your love so very deep.

Sorry I vent in Rhyme- I think I am part Cat in the Hat.

Re: hard week

Posted: Wed Apr 10, 2002 10:27 am
by Paula
Tina. you Cat in the hat you. That was beautiful (tears). So your a poet and did'nt know it huh.
---Paula

Re: hard week

Posted: Wed Apr 10, 2002 12:28 pm
by Kathleen
Tina I loved your Cat in the hat

To all parents...
I wish I could say that those of us who are obpi/adult had the support of all of our families.

I sent out notes to watch 20/20 I was so excited....
None watched .... I sent Awarness Packets....my kids read it....not my family....they really don't want to know or hear any more about my injury....its healed...I did OK....it did not hold me back....I am well adjusted etc...that is the answers I get... my husband is the one who give me the most interest & support. My close friends have been so interested and of course my children now ask a lot of questions and are amazed that they did not realize anything was wrong with me.... but I must always limit my conversations or I will get a pep talk... only my husband will let me ramble on when I need to.

If I talk about it.... my siblings just glaze over.... so thanks to these boards I have a place to speak...and we can all support each other....

Your children are lucky you know so much more about this then years ago. You now have support groups for the kids they will be better for it... They will see others like them who are injured in the same way....
So pat yourself on the back for reaching out and touching all of us....

Thanks for sharing I hope you have a better day and week...also Tina thanks again for the Cat in the hat...it was so sweet.
Kath

Re: hard week

Posted: Wed Apr 10, 2002 9:46 pm
by czmmom
I understand completely. I think with relatives, it isn't something they have to deal with daily and not seeing their own child in pain or limp handed like my son doesn't register in their mind that this will not go away. Rose colored glasses are not something BPI sufferers see through. I'm glad there are sites like these where parents can go to feel like they are not alone. I sometimes wish I would have known about this 2 years ago when he was born so I wouldn't have felt so alone. Renee