I feel like this injury is consuming my life

[ldeverna]

It's almost all I think about all day long and my daughter is only 3.5 months old. I have 2 other children and I feel like I'm not being there for them as much as I should because my days are now filled with Dr's appts, therapy, phone calls and internet searching trying to get the most info I can about this injury and how I can best help my little girl. Not to mention all the guilt, anger and what ifs that play over and over in my mind.
Does it get better with time?

[Mica]

Hang in there... It does get better. Aria is only 6 months old and I am already in a much healthier place. For the first 4 months or so, her injury was ALL I could think about. Even when I woke up in the night, I immediately started thinking and worrying.

Once you feel you have a good intellectual grasp on her injury, you will feel more in control of your life.
I saw that you are going to see Dr. Kozin - he will help you TREMENDOUSLY with the learning curve.

Hang in there. This community has already helped me a lot. I wish I'd found it sooner. Just knowing I have a place to go where people understand exactly where I'm coming from is healing.

Hang in there. You are not alone.

Mica

[Olivias mommy]

I agree with everything Mica said. Your daughter is so young- you havent gotten a chance to see how resiliant she is!

I have also felt my daughter's injury consume my life. We tried everything until I found Dr. Nath. We had therepy every day- somedays twice- I felt had to quit my conventional job and work from home so I could be available for my daughter 24 hours a day.

I also have another child- he is 13 months older than my daughter. I know what you mean about feeling that you are not giving your other children enough. My advice- CRY. But not in front of your children! Tell your husband. I was afraid to tell mine about my depression for a while- but when I did, I was surprised at how supportive he was. He picked up my slack.

You have made good first steps. You have a great doctor (dr. kozin) from what I understand. You have found this board. These things will help so much!!!

And as your daughter grows, you will still have bad days, days you just want to scream and cry. But you will see an amazing personality. You will see her accomplish things, and you will know how hard she had to work for those things. How PROUD my own daughter's strength makes me! She is so much stronger than I am! Your daugher will amaze you. It will get better.

Veronica
Mom of Olivia, 34 months, bilateral OBPI

[brandonsmom]

I agree with evernthing Mica and Veronica said. My son is 8 1/2 with a ROBPI. I too felt consumed with all his needs, I had three older child at the time they were 11,8 and 3. The two older ones really helped me alot with their brother. But they also understood why I was so upset about the whole ordeal. My 11 year old son, was just as distraught, and was bound and determined that his brother would play baseball and basketball just like him and he does ! I had another big disadvantage. My husband was miltary. He was always gone. I didn't have help, except my two older children. Not only that....the miltary controlled our medical, I had to fight for everything....they injured him, but they didn't want me to find out how bad. They even offered to amputate his arm for me when he was two weeks old. My husband was floating in the ocean, I lost control, what are they nuts? I threatened to take my son out in the waiting room and show everyone there the military's handy work...the doctor told me I wouldn't dare, well, all I can say is that...I got my referral to see Dr. Nath, even though they didn't want me to see him. My husband couldn't be involved in the lawsuit. IT was awful. Now my son is older. He has had two surgeries and I will tell you life is good. We are no longer military, that in itself is a big relief. But to look at my son I wonder why I was even bothered. He is a great kid, who does everything else that everyone else does....most of the stuff better than kids his age. He is always on top of his PE class because the teacher sees him trying everything and even achieving most of it.....okay the only thing he doesn't do is two armed push ups....but he has managed to learn a one handed push up, that his teacher thinks is just wonderful. I love these boards....people here are so helpful. You can truly learn so much. 6 years ago, I couldn't have sat here and wrote all this without crying, but now, I no longer have to have a box of kleenex on the computer desk. LOL ! It took me longer than most, I had to deal with it all, alone. Ultimately, it cost my husband his career, no big deal though, but at the time it was devastating. Yes, Brandon has had two surgeries, but to look at him you couldn't even tell. This injury can and will consume your life, if you let it. I wish I had the two years back that I let it consume mine. I don't even remember my son's first birthday, I know from pictures, that I had a BIG party...but didn't even remember that I cooked all that food. WOW !! Take time for mommy.....the kids cannot do it for you. Take care and remember that this is what we are here for !!! GAYLE

[ldeverna]

It feels so good to know I'm not alone It's also great to hear such wonderful success stories. I have so much more hope now than I did in the beginning.

Gayle, I cannot believe they offered to amputate your son's arm. How horrific!

[Canam]

My daughter will be 3yrs in a few months and I can honestly say it does get better, but for me the anger is still there under the surface. I am sure that will ease with time as well. My daughter has had a good recovery thus far, yet we are still dealing with scapula/shoulder issues, as her scapula still wings and elevates. One thing for sure, she has never let this injury stop her from achieving any milestone and most people would never know watching her go about her daily routine. She is incredibly independent and the prettiest little girl in the world. She is an inspiration to me, both of my kids are actually!

Back in the beginning I was very tunnel visioned and couldn't see past my anger, fear and hurt. I am sure that my son suffered to an extent, he was only 19.5 months old when my daughter was born, just a baby himself. I tried my best to be an excellent mom to him and pay as much attention to him as I did with my daughter, but I know looking back that wasn't the case, and for that I am so sorry. I miss the fact I didn't get to enjoy her infancy the way I believed I was intended too but hind sight is always 20/20. I can only strive to be the best mom now for both of my babies.

So, yes it does get better with time and to be so focused on the injury at 3.5months, only means you are human and that you love your child. Just give yourself time to breathe and remember to enjoy your baby as much as possible. Infancy is so precious and amazing and it flies by way too quickly.

Prayers that your daughter has a wonderful recovery and that you find some peace.

S

[MWhitted]

Ideverna, I just wanted to say that I completely understand because I myself am new to all of this. My son just turned 3 months and since I have started doing research, I have thought about how it feels like all I can think about is his injury. I am lucky....he is my only child, so I do not have other children. But the day before he turned 3 months he learned a new trick...and he laughed and smiled back at me when I laughed and smiled and I remembered that I will not allow this injury to consume. I will do whatever I have to do for him but I will try to cherish every moment. I have to thank this board because here I am finding my way back to some kind of sanity.

I will keep you, your daughter and your entire family in my prayers.

Maria
Amaru's mother ROBPI

[Mica]

Gayle,

Good for you for standing up to those doctors!!! Amputate his arm? Good grief! His ARM!
That boy has one strong mamma!

[MHBF]

I FEEL THE SAME WAY.
VERY WELL SAID EVERYONE!! (PATS ON THE BACK)
KATHY

[Cara]

My daughter is 6yrs old now. I empathize with what you are feeling. It does get better as time goes on. It becomes part of your life instead of taking it over. After two surgeries we ended up falling into a routine with the appointments, bracings, and home therapy. When they cut back on number of therapy appointments it actually flet like something was missing Hang in there. Know that you are not alone, the rest of us are here for you. And remeber a missed apointment here or there or forgetting to put a brace on a night or two isn't the end of the world.