Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
Ivey's Little Piggies
Get link
Facebook
X
Pinterest
Email
Other Apps
-
Ivey is still in surgery. We are anxiously waiting. Stacy took these sweet pictures yesterday during pre-op.
I don't comment much but I read often. I pray that things go well for Ivey, she is beautiful little girl. You have a beautiful family, I know you are proud.
Absolutely precious! I was just checking in for a surgery update. I have been thinking of Ivey today. The post below this one is so good, Gwen. You have such a great outlook on your sweet life. Let us know how the t-ball game went, too! What a mom! Your children (and husband) are truly blessed!
A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU. My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself. That decision did not come lightly. Another hole in her. Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival. Literally to give her a chance to live. A permanent decision. A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...
Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...
22 and 3/4th years. Every word, and more. We were told in the first 2 weeks after Ivey was born, in the midst of the chaos of her and having two toddler boys at home - that our marriage would likely end in divorce. Most special needs marriages do. Special needs marriages are a section of divorce happening at a higher rate than most- yet, overlooked by most. Still, someone felt compelled that we know that information during such a life altering time. It was an added layer we struggled to process, along with many other devastating blows. It scared us beyond belief. We were clinging to one another. Over the years, we have pushed the limits, the barriers. We have slept in the same bed, for weeks separated by miles and hospital walls, with nurses in the next room in the sacred walls of our home, and now, with our daughter tucked away in her own bed in our room. We have hung onto thin air at times. And, we have held on to each other. We were told in counseling, in our darkest days,...
Comments
I don't comment much but I read often. I pray that things go well for Ivey, she is beautiful little girl. You have a beautiful family, I know you are proud.
Amanda D.
I have to teach her what we taught our kids...
OK.. are you ready...?? I doubt it
start with the little toe..
Little pee, pee da lou, lou da whistle, ossle nossle, and GREAT BIG gobble gobble....
No kid can resist...
But I think her aunt Connie has to do it...
Sweet kisses to her and the boys
and hugs to you guys
Connie
Melanie
Can't wait to hear how her surgery went!
Thinking of you!
=0)