Healing Hearts: LIVING

Hi everybody!

So, I am officially the worst "blogger" ever, its been like three months I think since I've updated everyone! But like I've said before, no news is good news :)! I hope you all had as wonderful a holiday season as we did! It was our first Thanksgiving, Christmas and New Years that we truly felt what it meant to CELEBRATE and nothing more!! This year all we did was enjoy the season! We didn't have to change a feeding tube on Christmas Day, we didn't have to cut our family time short due to a baby that got sick because she couldn't breathe, we didn't have one doctor appointment and we didn't have a scheduled open heart surgery looming in our minds! I mean we made the best of our circumstances the last couple years but we were really missing out, that's all I can say!! Being Santa for a two year old is by far one of the funnest things I think I've ever done in my life! The anticipation of Madi seeing all her new toys on Christmas Day was better than any Christmas as a child that I can remember! I take that back, I remember being pretty excited for my Easy-Bake-Oven mom :) lol! I guess I always took it for granted, celebrating the holidays, until I didn't really get to for a couple years in a row.

Madison recently had a check up about a week ago and after a morning of lab draws and an echo her doctor came in to visit with us and said "well, I really don't have much to do, everything looks great, labs look great and echo looks good." I think these are words I will never take for granted, it's like music to my ears each and every time I hear them! There was a time, quite a long period of time, where every check up we had was always "well, this looks ok, that looks ok, but......" that BUT was ALWAYS there, just like a bomb waiting to drop some more bad news or some other devastating thing they had found out during the echo that day. Each time we go to the doctor I wait for that "but", praying that we don't hear it, and by the grace of God we haven't! Now I just need to remind myself that if I do, it's going to be okay because God's got this, I just need to TRUST Him fully; you'd think that would be so easy after all He has done for us and the miracles He has performed for us, but it's still hard, I wish it wasn't, but it is! A conscious effort on my part to ask the Lord for help daily, multiple times a day, that I may let go and release everything to Him. I'd be completely lying if I said that every time I drive up to TCH I feel completely calm knowing God's got this, it's more like, I feel sick to my stomach because of the 220 days we lived there that quite honestly were downright horrible some days and I never want to do that EVER again!! That's how it feels when I'm there, but later on I realize really how powerful and amazing it is that we made it out and if we can make it through that, HE will help us through anything, That is what gives me strength to put on a smile and act like I'm perfectly fine (even though I kinda feel like puking every time I'm there!)

It's amazing you know, there were days that we sat in the ICU with Madi hooked up to a machine breathing for her, an artificial heart beating for her, a tube feeding her and medications running through her veins that if stopped could kill her, but yet, there we were, playing in bubbles, watching Fox and the Hound, giving Madi pedicures, laughing and just LIVING as if we weren't dying? I remember people saying to Austin and I "I don't know how you guys do this, I could never do it" and you know what I don't know how we did it either! What I do realize now is that God was holding us up; He was giving us strength, He was helping us laugh when we should have been crying and He was helping us LIVE instead of being focused on dying! It's truly amazing what HE can do, not only did He work miracles on Madi but He helped us survive too and although I tremble at the thought of it, I have to remind myself, He will be there for us always, even if I do hear a "but...." at some point.

Besides heart stuff, Madi is doing really well! We continue to have physical, occupational and speech therapies to help her catch up for lost time, which she seems to be closing the gap each and every day. Gross motor wise she's about a year behind, fine motor wise, she's above her level with her right hand but struggles on tasks that require two hands as her left hand isn't able to open and close properly yet, but hopefully with more time and therapy we will get there. Her speech therapist always says she's so smart and is cognitively at the understanding of her age level (she taught her papa how to use his new iphone:) but just can't express with words at her age level, again about a year behind with her talking. But, we've increased her speech therapy from once a week to twice a week because she thinks she is right on the verge of a talking over haul and more frequent therapy right now will really benefit her. She recently learned how to say "no, no" and shake her finger at us, so that's been a joy for the other therapists and myself, lol! Why again did we teach her that word?? She also says "bowwww" all the time, guess who she hears that from about ten times a day! Yes, Huck enjoys giving his two cents when it comes to speech therapy, but then again, when doesn't he :) Madi is definitely a dog lover and continues to give them kisses before "nigh, nigh."

That's mainly what's going on with us these days, we have had some unseasonably warm weather here the last week or so and LOVED our mid 70's in the middle of January! For a girl who grew up with January routinely being below zero, I don't know if I'll ever get used to 70's in January, but I sure do enjoy it!! Thank you as always for your continued thoughts, prayers, cards, notes and gifts, they mean more than you know!! Hope you all are doing good in this new year so far!! Ill attach a few pictures of our holiday since we weren't able to share it with all our family and friends this year, enjoy!

Love,
Tabi

Gramsie and PopPop visit: Christmas #1 :)