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Urbanmom · 09-01-2010, 02:20 PM

I am sitting here after one of the Three specialist appointments Ds has this week...
Ladies, I can't do it I am breaking at the seams. How do you manage to hold it all together and come to terms with the fact that it doesn't end? We have 4 surgeries coming up within the next six months and two are major (cranial and Heart). I know most of you have been there, and I am sitting here wondering how do you cope? Financially we are falling down the tubes and we just found out that there are a ton more medical expenses that need to be addressed.
I just applied to go back to college and I should be elated, instead I am filled with dread and guilt for not being home with DS or not being able to take tons of time off. Pressured by DH to go back to school or work... Sorry for ranting and complaining, I guess I just need somebody who understands.

InkyMama · 09-01-2010, 02:21 PM

no advice, just *hugs*

mum_of_four · 09-01-2010, 02:31 PM

You'll cope because there's no choice. I don't mean that in a horrible way, just factual. You'll do whatever needs to be done and you'll get through it.

LMs is always here when you need to rant and rave!

Try not to worry too much. The most we can ever do is our best, and I think you're already doing that.

mommyg · 09-01-2010, 02:41 PM

No advice but lots of hugs and support. Don't keep all your frustrations and vents in, we are here to help even if just in a supportive role.

one ordinary girl · 09-01-2010, 02:46 PM

I have to agree with mum-of-four. ((hugs))

twinmommy · 09-01-2010, 05:02 PM

Yes, these ladies are right. You will cope and you will get through this but DO NOT DO IT ALONE!

Reach out to all the supports necessary. Access the Social Worker, Child Life Specialists at the hospital. Access the support services at school. Use any and all resources to help get you through this difficult time.

You are a strong mama and you can do it! LMs is here for you to vent and rave. Those virtual hugs can feel pretty good!

(HUGS) (HUGS) (HUGS) - YOU CAN DO IT!

Mother Hen · 09-01-2010, 05:11 PM

No advice but hugs to you!!

sabb6canada · 09-01-2010, 08:06 PM

Hugs to you. BTDT and still doing it. Again, because there is no choice. Just keep on trucking and try to look to the brighter side of things. As TM said DONT DO IT ALONE. There are many supports out there, access them including family and friends.
LM are always here to listen and support. Hang in there. There is light at the end of the tunnel.

AuntPetunia · 09-01-2010, 08:24 PM

All I can do is echo what everyone else said. ((HUGS)) If we can help you, ask. If you want to yell and scream, we're here to listen.

mama_jess · 09-01-2010, 10:20 PM

Hugs to you as well.
Take one day at a time...cherish each smile, laugh and hug. Don't forget to find time in the day just for you...we all need even 5 min for recharging and that can help us get through one day to the next.

Tan5kids · 09-01-2010, 10:23 PM

One day at a time. hugs and vent away.

Leigh · 09-01-2010, 10:36 PM

hugs hon.
you're a great mom, and you'll get through!!
hope to see you on the 15th at JFMs.

barkingboys · 09-02-2010, 09:50 PM

Sorry to hear he has so many surgeries coming up! It can be very daunting! I too need to echo, you will get through it because you have to. Honestly it can be very overwhelming, but in time you'll look back and it won't be so bad. I think a huge part is accepting this as your new norm (not saying you specifically or that you haven't just saying...), and work from there. Again, this is sometimes easier said then done. Are you hooked up with CPRI or anyone else? Make contact with a social worker, if you don't have one assigned or do not gel...ask for another one.

On a curious note, may I ask what the surgeries are that you're anticipating? I can't speak to the heart ones (yet), but may have some BTDT moments on other surgeries.

Vent away...we all need that. I'm sure many of us are in the same boat as you or have BTDT moments and can relate. As for feeling guilty about spending time away from your DS...unless you planned to home school him, he would eventually not spend every moment with you anyway. You need to do what works for you and your family as a whole, if going to school is it right now...then try to do it without regrets.

SweetyPi · 09-02-2010, 10:20 PM

Just echoing what the others have offered. You'll do it because your mom. That's just what you'll do. You'll put on the brave face and then cry at night. You'll hold strong as they're wheeled off because if they see you cry you know it'll break your heart. Stay strong mama. Know that you aren't the first, and you won't be the last. Know you have a wonderful community to back you up and catch you when you're ready to fall down. You have friends here that know what you're going through and won't let you fall through the cracks. As far as the money thing, get yourself hooked up with one of the hospitals social workers. They are an invaluable resource and can offer many a deal or way out. Hugs to you. Chin up girl. We know you can do it

Tanya-Mae · 09-03-2010, 07:58 PM

you do it like we do it... because we have to. All other alternatives suck and are unnacceptable!! You will wonder how the hell are you going to make it through you current schedule but trust me... months/years from now you will look back and be so impressed and proud to see what has been accomplished. My biggest suggestion is to seek out all the funding resources that are out there. Unfortunately they do not advertise so you need to invest much time and energy into seeking them out. There are programs/charities/organizations everywhere to help with your expenses. One example being: with one of Daegan's diagnoses there is an enormous, long term intensive dental intervention requirement. I got him approved under a Cleft Lip foundation program that will pay for a big chunk of this before he even cut his first tooth and he does not even have Cleft lip or palate. I also had him approved with an Easter Seals incontinence grant at age two despite the program applying to ages three and up.

The squeaky wheel...