Sunday, July 6, 2008

I want it to make sense

I have been really busy. Sorry for the lack of posting and the lack of updates/pictures. I am just doing a lot.
Both of our cribs were recalled so we had to take them apart, run out to buy another one and now we are waiting for the vouchers from the manufacturer. We currently have two babies sleeping in one crib and one in a pack ‘n play – hardly ideal, but an acceptable temporary solution.
And the de-tox? Well, lets say that I’ve fallen off the wagon too many times and the wagon finally decided to just leave without me. Its going that well. I had Mexican food for dinner tonight.
Stress and eating have always gone hand and hand for me and that’s a completely different issue entirely.

I’ve got a cold – IN JULY – but I have to say that this is the first time I’ve been sick since I was pregnant. That means I’ve been healthy-ish for the first months of their life and I am grateful for this. I cannot imagine doing the sleep-deprived thing while feeling crappy with a cold. It felt crappy enough! I was really hoping, though, when the first signs of this cold appeared – sore throat – that I was NOT getting sick but rather just a temporary soreness as result of sleeping with my mouth open or something like that. Nice visual, eh? Unfortunately, it’s a real cold and I’m sniffly and headachy and tired but I will be just fine.

The window for the six month post has come and gone and now I am working on making it a six/seven month post. I can’t seem to get into a groove to type it out because my brain is in another place. I can’t think of anything else besides what is on my mind so I’ll just unload.

As I have mentioned before, this blog is just a thin slice of our lives. I try to keep it pretty positive while at the same time not sugar coating when I do share the un-fun stuff. But I’ve kept this HUGE part from the blog for many reasons.

Brian has touched on the topic of his Mom’s condition before. She has Amyotrophic Lateral Sclerosis - or A.L.S. (AKA Lou Gehrig's Disease). Its something that I have not spoken about here because I have wanted to protect the privacy of his Mom and of the family. I have followed Brian’s lead about how much to share and he has recently given me the green light to talk about it myself. I am going there today, because I just don’t know what else to do. We need prayers. She needs prayers.

The bottom line is this. Her condition has worsened VERY rapidly. She can’t walk. She can’t stand. She can’t talk. She can’t swallow. She can’t hold her head up, so she can’t even see anyone’s faces or watch TV. She has no use of her body, except for some limited use of her right hand. She has been on a feeding tube for months. She has 24 hour care. She has no way of communicating except for with a whiteboard and dry erase marker, but she is losing use of her hand – the last thing she’s got left - so soon she’ll have no other means of communication.

She is dying. I hate to use the “D” word, but that is the reality. She has had tons of medications and seen the best doctors. But there is no cure for ALS. Everything shuts down and all she can do is ‘be’ inside her failing body. Its heart wrenching. Its horrible.

ALS is a horrifying, humiliating, disgusting, ugly disease. It is a thief. It has stolen from this family. It has stolen opportunities for conversations that will now never be had. It has stolen dreams of a future with grandchildren. It has stolen all of the potential, right before everyone’s eyes. We watch it come every day and take everything, piece by piece.
It happened over time, yet so quickly…
One day, her speech got weird.
Then she started experiencing numbness.
Later, swallowing became difficult...and then impossible.
Then walking became impossible.
Then moving at all became a part of the past.
With each piece stolen, also goes much of the hope.
It is cruel. It would almost be better if she weren’t aware. But she is completely aware of everything shutting down. Shutting. Down.
Of every part of her body that stops working.
Of each door closing. And locking.

This has been such a year. To give you perspective, I got pregnant, Brian lost his job, We found out it was a triplet pregnancy (HOLY CRAP!), I was put on bedrest, his mom was getting sicker, his mom got diagnosed, I went into the hospital, I had the babies, They were in NICU, Alexis got very sick, Brian started a new job, Babies came home, we were sleepless zombies…we are out of the baby fog now, but Brian’s Mom condition has worsened so much more quickly than we could have conceived. When the babies were born, Brian’s mom was able to drive herself to the NICU to see them for the first time. That was December. Today, she can no longer move her body, much less drive a car or hold a baby. She hasn’t been able to hold a baby in months.

I guess I don’t really know my point in posting this except that I just needed to type it out. And that I wanted you to understand. And that I want you to pray.

My heart is breaking every day. It is such a strange sensation to feel two extremes inside my heart. To feel such joy with the new life that these babies have brought to our lives, but to feel the gut-wrenching agony over something so out of our control as this cruel terminal disease and the reality of what it means. It hurts me to see my husband, who has carried ME since the beginning of this pregnancy/childbirth/post-partum journey, carry this heavy weight in his heart. The feeling of guilt that he can’t do enough. Trying to balance his obligation as a parent to three needy little babies and his obligation as a son to a parent who is battling with the helplessness that comes with this disease.

I believe in the Grace of God. I know that God is always working. But right now, I am just mad. I am so angry. I want this to make sense. Its not fair. I don’t even want to understand. I just want it to stop. I want it to get better NOW.

Every day that I think I am having a hard day, alone with these three babies, I remember that her day is much more difficult.
Who am I to complain about scrubbing the toilets? Having crusty peas/apples/formula on my neck? The weather being too hot? Not showering because I didn’t have time? Something sticky/crunchy on the floor? Having my thumbs be sore from changing over 700 diapers a month? Being awoken by someone crying? A messy/stinky diaper? A sink full of dishes?
These are all things for me to be grateful for.
We don’t spend our days lamenting. We try and remain hopeful but this is a grievous process for all involved, especially for Brian’s Mom.

I ask that you send your prayers for Brian’s Mom. Please pray for peace inside of her grieving heart. Please pray that she finds comfort. Please pray whatever God inspires you to pray.