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.
the seizures are still with us. It is a month of them now - every single day. Not like Ivey. Uncontrolled intense seizures - yes, but not normally this frequent. Too frequent. Meds have been increased and antibiotics galore. Time to circle the wagons. This past weekend and our little "super moon" didn't help any.
I am a little on the competitive side most of the time. Can't help it. It is just part of who I am. It can be a great asset or I can be my own worst enemy other times. Most often a good dose of competition pays off. When I look at Ivey - I see she might have gotten a little bit of that competitiveness - also when I look at her, especially on the hard days, I see she is a race to be won.
The downside to being competitive is failure. I hate to lose. Personally- there are alot of times when I look at Ivey and hear the defying words from Apollo 13 whispering in my ear, "Failure is not an option." I feel a battle raging.
Anyway - I read this article about a year ago and held onto it. I ran across it again the other day. Originally when I read the article, I didn't think about Ivey or her battles to be won and lost. Rather, I thought about our boys. They were playing sports - wanting to win. I thought alot about me sitting in the bleachers and how I should …
Today is my oldest son’s birthday. Wow. Where does the time go? I think he is going to have an awesome day. I have to admit, another one of those things I would love to take credit for but have no bearings on, that he is one of the neatest people I know. Smart. Very first born. Very type A. Very rational. Very responsible. A compartmentalizer. Extremely focused. Unconditional loving heart - for everyone. Bound to accomplish what he sets his mind to. His daddy is a lot like that. But, he also has a level of compassion and realism that is sometimes perplexing to see in such a little body.
I have heard people say that having a sister like Ivey will make him more compassionate. That is possibly true I suppose. Just watching him with her would suggest that, but honestly I think he would treat her ‘special’ no matter – he just loves his ‘baby’ sister as he does his 'baby' brother. Compassionate, yes, but again, I don't think she gets the credit, that is just who he is.
There are alot of things that I would love to take credit for - alot. But when it comes down to it, I have absolutely no influence..... None. Notta.
Like this morning, Walker was up first (before Knox and Ivey) and came into Ivey's bedroom where Matt and I were (after changing of the guards with the nurse). Unfortunately it was time to get the day going. So Matt went one direction to get ready for work and I went the other to get uniforms out for school. In the meantime, Walker took Matt's place next to Ivey to keep her company while she slept and while I got the clothes.
This is what I came back to at 6:30 am this morning - Ivey still fast asleep with Walker sporadically reading what he could to her from the Lorax. The photos I snuck before he realized it - And this...Ivey's clothes out for the day - complements of Walker. One black and white striped shirt. One pair of polka-dotted pants. One pair of socks. Shoes. Without fail- she wore this outfit to school. She was sound asleep,…
When I look at pictures like this, I realize how little I talk about Ivey's League and exactly what and who they are. But part of me holds back from talking about them because their time with Ivey is just that, their time. For a brief moment when they are with her I am the outsider. Ivey is a very blessed little girl surrounded by a rainbow of people with a variety of personalities. She gets a real taste of life, real life from them. I sit as an outsider and see so many kids like Ivey secluded and even more often they may be involved but with limited access provided by parents alone. Not Ivey - she is surrounded. The best way I have ever found to describe their role in her life is that - they give her something to live for. And on the flipside they are rewarded by unconditional love. It is things like ballet that become possible for Ivey. And under normal circumstances it would be easy to say that something like ballet is an activity she "can't" do, but to t…
So the seizures are still with us. Just finished up the clean-up from her latest one - that was exactly 10 minutes ago. My mind is mush.
After a nice little seizure in carline yesterday morning, I was convinced that the two rounds of antibiotics just haven't done their job, and maybe the fact that two straight weeks of seizures is enough. Through wheel spinning between our pediatrician, neurologist and yours truly, we are taking this battle to the next level. For now she will be on a three day round of ativan to try and curtail the seizures. Tomorrow we will begin a month round of a stout antibiotic - and then we will re-evaluate, pending the seizures subside. If this doesn't work I am ready to admit her for IV antibiotics.
It is hard to imagine that something so simple as a sinus infection could inflict such havoc. But maybe this will give you a little insight as to why we avoid illness like it literally is the plague. Bigger things are extremely hard on her littl…