The word is in the songs we sing. It is in the words people use to encourage us.
Hope was once a word I used to express expectations for my children.
I hope Matthew can sit unassisted one day. I hope Autumn can "walk" in whatever way that may be.
Now, hope has a new meaning.
The past three weeks have been a whirlwind.
It all started on a Sunday. Matthew woke up from a nap seizing. We hadn't seen a monster in four months, so we were immediately concerned.
Diastat was needed. It didn't help.
So off we went to our local ER.
There he was given Ativan. That seemed to eventually have an effect. Several hours later we were home with a loopy boy. We honestly believed this was a freak occurance.
Fast forward to the next Friday. Again, Matthew began having a seizure. This one was a nasty one. Diastat was given. Again it didn't work. And off the our local ER we went.
There he was given Ativan. This time it had little effect.
The doctor ordered blood work and a CT scan. After several hours we were care flighted to Cook's.
Upon arriving to Cook's Matthew had an even scarier seizure. And he had several episodes of apnea while being monitored.
More Ativan was given. Then Dilantin.
Eventually we were sent upstairs for a night of observation.
Saturday, Matthew seemed fine. The seizures were still happening, but everyone was comfortable sending us home to follow up with our Neurologist on Monday.
Monday came. A call was put in the our Neurologist. He directed us to go back to the ER.
So we went again. We waited. Seven hours we spent lying on a bed in our local ER.
The doctor that was there was the same doctor we had seen on Friday.
We asked me to look at the CT scan with him. He showed me every frame of my sweet boy's brain. He then said it appeared Matthew had increased pressure. We needed to follow up on that. He also said that Matthew's brain was pretty much "mush." He not-so-nicely told me that Matthew was not going to ever get better and that I should just deal with it.
And my heart is still laying in a million pieces on that ER floor, I'm sure.
After several calls back and forth to our pediatrican and a visit resulting from fever, we have decided to increase Matthew's Depakote level and "wait things out."
We have an upcoming appointment with our Neurologist later this month.
And suddenly the word hope has taken on new meaning.
Hope is a funny thing.
Before, my hopes for my children revolved around what I wanted them to accomplish.
I hope Autumn falls in love. I hope Matthew is able to communicate with us. I hope they both have the opportunity to play on a sports team.
Now, my hopes are different. They aren't tangible outcomes.
I hope Matthew wakes up every morning and goes to sleep every night knowing how much we love him.
I hope he continues to always laugh when his sister cries.
I hope Autumn will never feel second best as her brother needs a bit more of our attention.
I hope I never fail either of them as a mother.
And I sit in a state of limbo. I want to hope for the future. I want to daydream about my children's destinies.
And yet, I am scared of what lays waiting for us.
Matthew's future has always been outlined in reality. We understand the ramificiations of what hundreds of daily seizures due to an already overwhelmed and underdeveloped brain. We understand that as he gets older and bigger, many things will become much harder for him.
Yet, we never viewed our lives or his in that manner.
We are children of a loving God. We know who the ultimate healer is. We have put our hope in knowing that everything works out for our best.
Though those things still hold true to our hearts, we have had to face some questions that we were naively not ready for.
And suddenly every single day seems so precious.
And all we have to hold on to is hope.
Now, this is not meant to be a sad blog post. This is our life. It is real. It is raw.
We refuse to cry ourselves to sleep worrying about that which we cannot control.
Instead we are creating a "Matthew's Most Awesome List."
This list will be our family focus. We want to insure we provide our children with experiences they deserve.
Let's face it: Life is precious for all of us.
And I promise to try to blog more often. I took a hiatus to try and find my blogging self. I wanted to be a writer, and I felt that my writing was becoming very sad. I don't want to do anything but give other people hope in the middle of their journey. I want to be able to be open and honest. And I hope that is what you blogger friends find here.
Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
Til Next Time....