United Brachial Plexus Network, Inc.

Hi everyone. I haven't posted on the boards for the longest time. I was just taking a short break from all of this trying to regroup. It seemes that every aspect of my life totally surrounds Rain's injury. I have been trying to make sure that everything goes smoothly with Rain and her recovery that I lost focus on other things. I mean, with all of the doctor's visits, therapy, and the emotional rollercoaster that this injury puts each of us through I somehow have just become drained. I am sure that we each feel this way at one time or another, but my question is: Are these feelings of mine selfish?
There are so many days that I just don't want to deal with it. How realistic is that? Not to realistic I know. I just want to for one day not think about this injury at all. Really Rain is handling this much better than I am. She is so young and innocent, and she has adapted so well that I really do think that she realizes that anything is wrong. She thinks that we all are living in a one handed world, but we aren't. I watch her go through life mostly frustration free, but sometimes she reacts because she does get really tired of not being able to do everything that she sets out to do. For example, she was coloring this afternoon with her big sister. She was watching Ocean color on one side of her paper and then flip the paper over to color on the other side (all while holding the crayon). Well, she attempted the same maneuver, but could not do it with her right hand holding the crayon. Sure, she could have put the crayon down which we think is the logical thing to do, but in her young mind she didn't think that way. I took the crayon from her, put it on the table, and flipped the paper over for her. Ok crisis over right? Not, she then had a problem because the paper was sliding around while she was trying to color and she could not use her left hand to hold the paper still. Needless to say she got upset, threw the paper and the crayon and had a breakdown. Normally, this is not a big deal, but to our kids it can be a crisis because this is just one in a million more times they are not able to do just what they want to get their arms and hands to do. That may not be a big deal to some, but when it happens with regularity it is hard to watch.
I just want for her to have everything happen for her the way that it should. She used to really enjoy having her weekly visits with her therapist, but all of a sudden she has had enough. Not that I blame her, heck her schedule is as busy as a person working a 9-5 job and she is not even 2 years old yet. I just keep telling myself that I am doing this for her good, and as much as she may hate it right now that one day she may thank me for it. I remind myself that as her mom it is my job to take full care of her, and as long as I have the strength to do it, I have to do it.
Surely none of us imagined days filled with appointments the the doctor, therapy, trips to the chiropracter, massage therapy, and daily ROM exercises, and don't forget the splints they have to wear either daily or post-surgery. I just want all of Rain's days to be happy and fun filled, I want her to have pleasant childhood memories that she will one day share with her children. I guess what I am needing is to figure out how to put the fun back in our lives. Any suggestions would be appreciated. Well, I guess that I have droned on long enough. I didn't intend to but the words just came, and I went with it. Thanks for allowing me to express myself and thanks for listening. I know that if anyone understands, you guys do. Thanks again,

DeShawn
(sorry so long)

DeShawn, Hi I am Pam, don't post often here so I'm sure you don't recognize me. I wanted to give you a hug. I think we all have those days. Heck I've written similar posts to other groups. "I just wish we could have a normal day." Well, ya know what we have tons of normal days. because I have made it a priority for my ds' happiness and my sanity. Would the world abrutply stop and throw us off if we took a day off every so often? I can assure you I doesn't. Will an occasional days break from "the arm" have any affect on your dd's well being. Actually it would have a very positive affect on her well being. We have plenty of "days off". We just don't worry about it. Wednesday of this week happened to be a beautiful day. We went to story time, walked to the park and played, then got an ice cream. When his sister got home from school we went outside and played some more. Not once did we do ROM. I did not remind him to use both arms or do it this way. You know what he actually got a lot of therapy in that day off. At story time he stretched, tried the finger play and danced. At the park he climbed and crawled through the tunnel. He spent time the afternoon outside hanging from the swing. You know I think that day off was just as important if not more to my ds' well being as doing ROM and spending the day working. It was a positive day for our family. I am a huge believer that positivity on my part is the exteremly important part of my ds' treatment. Sure we all have those days, or even weeks where we feel sad. We've had enough and start to sink into the darkness of negativity and "woe is me" you know it's a place you don't like being. You know it does nothing good for your child or rest of your family. So I work hard at getting out of that place and back to a place where I can be of some use to my kids. I don't know everyone's way of getting out of the negativity. For some of us it's easy. Others have a hard time shaking off negative. I just hope and will pray for your family that soon you will be able to be in a happy place. Not in spite of your dd's injury. But because you have a lot to be happy about. I don't know you or your exact situation, but I do know that you have 2 dd's and that is enough to make any mother giddy if she allows it to be.
Love peace and happiness to you
Pam

My advise to you would be to take a day off now and then. We've done that a couple of times with Matthew. The week before surgery we just let Matthew be himself. We did rom a couple of times a day, but didn't do all of the other stuff. Taking a breather is sometimes best for everyone in my opinion.
On the note of breaking away from the negativity. My dh and I have (most days) accepted the injury and have come to terms that Matthew will have some sort of permanent injury. We are starting to try and get the family out of the habit of asking about "the arm" and make them see what a terrific boy he really is. Also getting away from the negativity and accepting life how it is now has also helped me to do my Catholic duty of forgiving my ob. (there are still days I'm very angered, but the feelings don't last long)

You are not being selfish!!! and its great you have a place to express your feelings.

There are lots of ways to do therapy with out the kids realizing it... Hanging from the swing is one great stretch... turn the bikes upside down..pin on a card and let them turn the wheel and make lots of noise..LOL.... enjoy some days.... Playing was my only therapy or so I thought... I realized when I had children that none of the other parents played the games I did with my children.. duh I was doing therapy... clay...playdough..arm stretches... small clothes lines with pins to hang their doll clothes on...teaching them to walk with books on their heads... It never really dawned on me that I was do my therapy with my children... try something that you will enjoy or just take a little break for your self...
Maybe a designated day off for the family... no arm talk... I hated being reminded to use my arm all time but now realize that if I had not had all that play therapy and been reminded to use my arm might I never have moved at all... she will thank you someday.

Kath

I loved your honest thoughts. Taking a day off from time to time is a great idea. Play therapy is just as important once in a while. Try not to feel blue, just remind yourself that Rain is here, and that she is lovely. Good luck!

DeShawn,
Sorry we haven't talked! I am right there with you. I am scared of dealing with the future outcome with Alexyss. I will try to call you this week. I am somewhat free-er than last week. I am going to probably call during the day. Email me if you want another time. We can share our grief together. My heart is with you, your husband, Ocean, and Rain.

Tracey

Hi, DeShawn. Sorry that you're having a tough time right now. I can definitely relate to your feelings and NO, you're not being selfish.

Have you all taken a family vacation together? We're going to take our first one soon -- to DisneyWorld!! and to see some family in FL. This will be our first trip that doesn't involve an evaluation from Dr. Nath or a BP conference, or surgery. I still don't know how we're going to pay for it, but if I wait until we can afford it then it'll never happen! You should have seen my struggle in planning it too. It was awful b/c I try not to let this BP thing take over our lives, but here I was trying to get to FL before Nicole turns 3 (b/c Disney and Sea World would be free for her), at the same time I was trying to schedule our trip before Nicole was out of the splint b/c that way we wouldn't have to take 1-2 weeks off from therapy. Is that awful or what?! I finally realized what I was doing and said, NO, we are NOT going to DisneyWorld with this mega splint on and I said NO we are NOT even going on vacation with this thing on b/c w/the splint on we'll be talking about Nicole's injury the entire time. What kind of a vacation is that?! So anyway, we're going to go AFTER the splint is off totally!! I'm also going to delay starting TES again b/c I do NOT want to bring that thing with us!! Anyway, sometimes I think we just have to take breaks and think about what's more important.

While I think a vacation might do you good, we all know though that vacations are only temporary breaks from stress that soon returns. If you want to read what the long-term solution is to putting the fun back into your lives, I think you'll find the answer in the Dec 15th Watchtower, page 14, paragraph 18. Well, for me that's where the answer lies. Let me know what you think. I hope this helps.

Love, your sister, Tina

P.S. Rain is seeing a chiropractor? Email me and tell me more please. (I know you spotted that too, Mary!)

Thanks everyone for the words of encouragement. It is really nice to know that although we may feel alone, in actuality we are not alone. Tina, I read the article in the magazine, the words were just what I needed to read right now. I am going to focus my attentions on just living each day to the full, just letting things go sometimes. The idea of a vacation sounds great, and it may be something worth considering since it will be getting warm soon. Tracey, I look forward to talking with you this week. Call anytime. As you know I will be at home. Thank you to everyone for just reminding me to allow both Rain and myself to enjoy life. Maybe I can stop being psycho therapy mom (smile) and just have a good time. I think I still remember how to do that (smile). Thanks again,

DeShawn

Well - I've been gone for awhile myself - for the same reason! We've got Cassidy (2 1/2) - 3 surgeries - therapy - doctors - no Chiropractic care yet- but looking into it - and on top of that, my oldest daughter (8) - Darian was recently diagnosed with Bi-Polar disorder - which in some ways is worse that BP. Our lives are consumed with docs for Cassidy - therapists for Cassidy - therapists for Darian - all on top of school - girl scouts - soccer - doctors bills. . . . . . . so many doctor bills. I worked 2 jobs for over 8 months - without a day off - my husband is now working 2 jobs. . . . it's a struggle - and you're not selfish for wanting a break sometimes - I think sometimes we have to have a break or we'll go insane! ha ha ha

Just keep your chin up - and keep doing what you're doing - because what your doing is being the Best Mom that you can be! And in the end that's what matters and that's what your kids will remember of their childhood memories - and they will share them with their children - "Your Grama spent every day when I was little loving me - and taking care of me - and making sure I would grow up big and strong!"

Just remember to stop and take care of yourself too DeShawn. Who will take care of the girls if you drop?

Remeber the promise girlie!