It is kind of funny how, when your baby is stuck in the hospital, it seems like the word "home" becomes a dirty word. As a parent, you'll ask questions about it, talk about it unceasingly, every day. The reactions you get from doctors and nurses vary wildly, just as the reaction a two year old would get for saying a "no-no word". I've gauged all the reactions, from shock (how can you bring up home when you don't know if he'll survive?), condescension (poor woman doesn't even realize how long this will take, how silly of her), pity (oh how sad, she's wishing for something she can't have), defensiveness (what does she think? That we can just POOF, send her kid home?), evasiveness (i hate telling bad news, why do they have to ask questions I don't know the answers to?) and frankness (I gotta tell her my opinion, because no one else will). It's literally like pulling teeth.
I have literally been told by NICU staff "we don't say the "H" word around here."
Sorry to make you all uncomfortable, but I will continue to ask.
I will talk about it daily. I will sigh with wanting, I will laugh about envisioning the future day we go home, I will cry with frustration over the time that it is taking.
Because HOME means my baby is well enough, and HOME means I can finally spend all my hours with Evan. HOME means seeing every smile, tear, every laugh and cry. Being able to comfort him during the night, play with him, snuggle and read to him, without the strict schedule and watching eyes of the hospital staff.
HOME means our little family is complete, and no matter what I will continue to say it and ask when we'll be there.
Because I refuse to allow anyone to take the hope of HOME from me.
It has been a 6 1/2 month journey, and we are finally starting to see the light at the end of the tunnel. Tomorrow, we start trach collar trials. He will be weaned completely off the ventilator (if all goes well) within about a week and a half.
That is only if it goes well, but I sure hope it does.
One lesson that Evan has taught me is that you have to have hope, tempered with practicality.
We'll be HOME soon. :-)
Yes...his road (and yours) has been a long one...OF COURSE you want him HOME! As you so eloquently put it..."HOME means my little family is complete"! Yes..we know that HOME means he is MUCH improved <3 Yet..in every step of the way...Evan has made wonderful progress. We could all sit here and say "IF"...If he hadn't had the abdominal wall defect...things would be so much different..."IF" the omphalocele sac had not ruptured...If, If, ...if! We are where we are, however...and we are very thankful he is doing so well!
ReplyDeleteWe are SO VERY sorry he's had such a hard road thus far. But, we are EVER prayerful and expectant of his total recovery.
Nana and Pop loves that boy so much! We cannot wait for him to be able to experience the things every other child takes for granted...things like eating normally, for instance. Kiss our grandson for us! We will be up soon to collect them for ourselves! Looking forward to seeing you on Monday!<3