Sometimes I try to remember what life was like before the babies. I remember making good money, buying whatever I wanted, never being home, going out to eat with just Ricky, VACATIONS, you know freedom. But with that was also taking care of a boy that no matter what Ricky and I tried, was never enough, the extreme discipline issues that came with that boy, the drama. I don't miss that part one bit.
If I was perfectly honest, I would admit that I do miss having a career, earning my own money that was a wonderful contribution to our home. I miss coming and going as I pleased and without fail a facial and pedicure every two weeks. No matter what there was emptiness though. My babies have filled that void.
If I had one day to make wishes and those wishes come true, I would first wish for my babies health to be perfect in every way, the second would be for everyday not to be a battle. You know, being ready for war with anything related to the kids.
I don't know, maybe I'm not making any sense but maybe this will: Life is very difficult right now. Everyday seems to be something major. I just want to put life on cruise control for a while and enjoy the ride.
The kids have qualified for disability due to them being so premature. In Texas, if you get SSI you automatically get Medicaid. We've always kept the insurance from Ricky's job for the entire family which he pays for every single pay check but this was secondary. Whatever Blue Cross doesn't pick up Medicaid will. It has saved us close to if not more than $15,000 this year alone. Having Medicaid secondary is how we do what we do. How my kids get therapy every week several times a week for several disciplines. Well, now we may not qualify for Medicaid anymore. We will meet with SSI next week to see what they decide. Just to give some numbers, for therapy alone, the copays are $660 per WEEK, their food is well over $1000 per month, and this doesn't include anything else like diapers or wipes, clothes, medication, specialist copays, regular copays, etc.
To say Ricky and I are freaking out would be an understatement. I don't know what we are going to do if they lose their benefits. My kids need therapy so not doing it isn't an option. The only thing I can think of is going back to work full time and hiring a nanny since they can't go to daycare still because of their immune systems.
I just don't get it. Why does this life have to be this hard? Have Ricky and I not been through enough? I mean we never feel sorry for ourselves but what the hell are we going to do? I can't explain how broken I am. I've fought every day for 15 months. This stress with their benefits is killing me. I jokingly say thank goodness I'm not an alcoholic or drug addict but really thank goodness I'm not. I just need relief. Ricky needs relief. The burden of worry is so heavy it is so hard to breathe.
I just look at these amazing children. I get so mad at myself because they didn't ask for any of this. They never asked to go through what they've been through. Just Tuesday Brody had to get blood drawn and x rays. He does not deserve this. Why can't they just be like any other 15 month old and have a "normal" life? It makes it so hard to stay positive when you are knocked down week after week. I always try to look at the positive but I don't see anything positive right now. It's great Gracie's voice will be fixed next week but she shouldn't have a paralyzed vocal cord in the first place. Why is Brody blind? Who does that benefit? Not him for sure! Why does he have brain bleeds? Why does he have stomach issues and is in pain all the time? Why is Madi's head shaking? What am I missing? What lesson am I suppose to learn through this? I've already been to hell and back with our NICU journey. I've already had to plan my babies funeral. I've been through the pitt of hell so please, someone tell me what the hell I'm suppose to learn. I've faced many days and nights that one of my babies would die, MANY. I've been broken and I'm still broken so WHY? Please, someone tell me. What am I suppose to do? My guilt of having them so early will never leave me and every single diagnosis, every single therapy session, specialist appointment is a reminder. Yep, I hear it loud and clear. It is so incrediably personal.
I just don't get it. We try to live a good, honest life. We support ourselves and always have. Seriously, we don't live with other people, mootching off others because we can't grow up. Nope, Ricky gets up and goes to work every day, keeps a job, takes care of his family, pays the bills, you know all the stuff you should do because you're a grown up.
We just need the stars to align and things to get better.
That is all I've got for now. I know God has paved our path and I know in the end we will be ok. I just hope it is soon that we see what He has been working on behind the scenes.
Krista
