Where do I even begin....the past like 6 months have been harder than anything I've ever lived in my life. Don't get me wrong, since Nickolas was born, things have been tough with his health and what not, but these last 6 months have been horrible all the way around.
I heard a line in one of my favorite shows this week...."The only thing you can do is live for today." It struck a cord with me, those who know me personally and know what I've specifically been through in the last 6 months understand probably more than I do what that means to me.
Just Nickolas' health alone has changed dramatically. 6 months ago we still thought he had a debilitating disease that he'd live with for his entire life. We were still wondering how we were going to afford his 2000/month medicine for this disease. We still didn't know what he could eat....and what he couldn't eat. Then, in an instant, everything we'd tried to plan for, everything we knew changed--forever. He no longer has this disease, but no one could explain the heartache we'd been through.
We give him food and sit back and wait....no reaction. Could it be that all this time there really wasn't an issue? I have such a hard time fathoming it.
We went for his follow up with his new GI doc in Orlando last week....it was our last appt. with a GI doc. Can you believe it? He said there was no reason for him to continue seeing him unless things drastically change somehow, but unlikely. All the way home, I was just in shock. I can't imagine going 3 months without seeing a GI...let alone forever (I'm hopeful :-]). It's still kind of sinking in.
Then, this week when we went to his therapy session, his therapist jokingly asked..."So, tell me Nickolas has completely changed in two weeks and is now eating food." I laughed and said, "Actually, he is." She was in shock. My son hasn't eaten more than a few bites of food a day in months. Sure, he had days where he'd eat a bowl of macaroni and cheese--but that would be all he'd eat in the entire day! The therapist couldn't believe it...I think she was in more shock than I was. We had already talked at our last appointment that her knowledge and ability to help Nickolas was growing thin. Medically, he was capable of eating, he was just choosing not to. He still has major texture issues and hyper-sensitive gag...to go along with his aspirations, but we're doing everything we can for those. So...we're taking a couple weeks off to see how he does...and assuming he continues to eat like he did today, there's another practioner that will no longer be in our lives. I'm just not sure if I can take it. It's all fantastic news...but wow, I wasn't prepared for it.
Speaking of eating like he did today....guess what he ate today? He had an entire serving of hashbrowns from chick-fil-a, and two "breads" from the chicken minis (not the chicken), 1/2 a chicken patty, a spoonful of mac and cheese, ice cream, pumpkin muffins, cheetos, and chips and salsa. Can you believe that? Just typing it I'm in tears....we thought he'd never be able to eat any of those things...and he had them all in one day!!!!
Now Miss Alissa ate that times 3 today! I swear she's going through another growth spurt. She's up to like 30lbs....and Nickolas, he's finally tipped the scale at 24lbs!!!
Speaking of Alissa...can you believe that in 44 days, she's going to be 4?? I'm in such a state of shock over that. Every day, she amazes me. Her beauty, her grace, and most of all--her understanding. She understands more than a 4 year old should ever have to understand and yet, she takes it all in stride. She never complains...last month when Nickolas was in the hospital, she told me, "It's okay, Mommy, they'll take care of him." It breaks my heart that she's been through so much in her little lifetime, but I'm so grateful to have such an understanding, loving, gracious, and blessed child. The Lord speaks through her and sometimes, she's the one who tells me just what I need to hear. I thank God for her and her wisdom every day...because some days, I couldn't live without it.
Emotionally in the last 6 months, I've been to where I thought I'd never get out...so deep that I thought I'd rather just sink into a deep hole than try to crawl out....but something I'm learning along the way is that "The only thing you can do is live for today." I never thought I'd be okay with that....but I'm learning day-by-day that it's okay...I can do this...it's tough, but we'll all pull through and no matter what happens, in the end, when God asks what I did with my life, I can tell him I lived all my dreams and followed every rainbow...and thank Him for the opportunity to live for today.
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