Sunday, May 16, 2010

Lonnng Trip Alone!

Tomorrow I have an appointment with my ob., it will be my VERY last with her- uggh I cant stand the lady, and I plan on walking over the the hospital next door and getting all my medical records, THAT way, when drs ask me "how was this not seen? did you have prenatal care at all?" I can show them all of the ultrasound photos and info. I'd like to know for my own peice of mind too, if this could have been seen. (the diaphragmatic hernia). The appointment couldnt have come at a better time, I am starting to really feel the impact of everything that is going on in my life, and its wearing me down rather quickly! : my best friend moved to the other side of town, and I cant see her nearly as often as Im used to, in fact, because we have both been so busy I havent even really talked to her. The sad thing is, I dont have the energy to care about anyone else right now! I am emotionally exhausted from everything and especially from the child support thing. I have basically cut myself off from everyone because I have a hard time listening or asking whats going on with them, quite frankly, I dont care right now. I am very sad at how hard it is for me to leave to do anything because of the oxygen and monitors! I know it wont be forever, but right now it's killin me. Expecially because my mom is scared to really watch her unless she is sleeping.
So, Im ready to get this week over with, all the appointments and things, and relax a little! And I cant wait to get this child support over and done with. Its a subject that breaks my heart every friggin time I think about it. Oh, and I am going to talk to my pediatrician tomorrow about a revised vaccines schedule!
I saw this on someone elses blog- where they would write what they were grateful for at the end of it, and I am SO copying their idea :0)

<3 Grateful for:
*Gods many gifts to me, strength being one big one!
*My daughter
*My parents support
*The very few people who ask how I AM
*Friends who are considerate of what I'm going through and try to help me by getting me out of the house!
*and God :0) again.


Amanda Hoyt said...

Hi Lauren,
Just got to read your post and I'm so sorry for how you're feeling but I had a feeling this day would come...Now the adrenaline has stopped pumping and you're left with all the can be depressing (I know) and all you're left with are those tapes that keep playing themselves over and over again in your head :(
Just let us know if we can help in any way. Sorry we have to work and have our families to care for at night but if we can run something by or help out on the weekends, just text and we'll see what we can do, ok? I love that you are copying Kahla's "greatful for" idea. Isn't it wonderful? I always feel better after I read her posts :) Love all of your "greatful fors"!!
Well, just wanted you to know that we are here thinking of and praying for you from afar. Wish there was more time in the day so we could help out more. Let me know how the OB appt. goes.
Love ya!
P.S. I have something for Lillian (and you) and would love to drop it by when it's a good time <3

Charity said...

Hi Lauren~ I am so sorry for how this is going for you! I can only imagine how hard it must be. I wish I could do more for you! I will continue to pray for you and Lillian and for your strength to multiply. I know the child support thing is hard and painful. Trust that things WILL get better and you are right.....there is a bigger purpose for that little miracle! I hope all goes well with the vaccination scheduling and the OB appointment. Keep thinking on the psoitive things (Phillipians 4:8) and never forget that right now God is carrying you through this! I love keeping up with you on the blog (since I don't get to see you anymore). Best wishes! If you need any advice or ideas about child support let me know....BEEN THERE!

Kami said...

Oh Lauren. I am so sorry! It is so hard to not have support from other moms who totally get what it is like to have a "sick" child. Your other friends probably do not really understand most of what you are feeling and you are left feeling alone and sad. I so get it. It is really hard when your friends and family let their eyes glaze over as you talk about what is happening in your life right now or worse don't even bother to ask. But it is truly not out of meanness, but rather a complete and utter lack of understanding of what it means to have a chronically ill child or a child with a syndrome or other longterm diagnosis. They just really don't know how much that impacts EVERY SINGLE area and EVERY SINGLE second of your life. Of course you wouldn't wish it on them to have such challenges, but it doesn't make it any easier.

Is there a physical support group in your city? One where you can go to meet other moms? Even if it isn't for Turners, maybe the NICU has a support group? We were in the NICU in two hospitals and both had bi-weekly support group meetings for AFTER discharge. It helps to be with other people who have walked in your shoes, even if it is not the same diagnoses.

Also, is Lilli eligible for Respite Care through your EI provider? I think most states provide a certain number of free hours of respite care monthly for families whose children have diagnoses as severe as Lilli's. Call the NICU or your Social Worker or Case Manager from the hospital to ask them if they know where to start or your local Regional Center or the EI Coordinator you have.

If not, can your family pitch in financially to give you a couple hours a week off? That is, can they help pay for a nurse or trained LPN or even a college nursing student to watch her since they are not yet comfortable doing it themselves?

It is hard to maintain those other relationships right now and you are totally justified in not exerting what little energy you do have on them. But if your current friends are the only ones you have (meaning you haven't met other moms in your shoes yet), pick one or two who are the most open to your situation and explain how overwhelmed you are and that you need them to give 100% to the friendship right now b/c you can only give about 10%, but that one day you will be able to give WAY more again.

I am so sorry for all the sorrow right now and doing it all without a partner must be unbelievably difficult. Along with dealing with just trying to get any child support, etc.

Hang in there and keep venting here b/c you need to let it out. I promise, it does get easier and it does get better, but it takes awhile.

Kahla said...

I'm so far behind on blog reading and am just catching up. I can't even begin to imagine how hard this must be on your, but your strength amazed me every single day! Lilli and you are very lucky to have eachother.

I wish we were closer and could help, but we are a good hour north of Houston. I do send lots of prayers your way and think about you often.

On the vaccines we have chosen to go with the regular schedule. We researched and spoke in detail with our pedi and that was what we decided. However, I think that's a choice that only you can make. With Lilli and all that she's been through, I could totally see that being a hard choice for you.

Hang in there and know that this too shall pass. Sometimes when life just seems hopeless and hard, finding things that your grateful for really does help!