I've been pondering Noah lately. He had a rough day today. Nothing huge, a few little seizures, but it was obvious with all the screaming, shrieking, throwing things, and swings he took at a few of us that he was feeling a little off. It's hard to know what causes days like this, whether it's pain, frustration or something else completely, because he can't tell us. Sometimes he gets like this when seizures are brewing, but not always. And sometimes he has big seizures with no warning or fanfare at all. That's what happened a few weeks ago.
Noah had 9 seizures in about 26 hours. More, actually, if I were to count the small-by-comparison tremors he had in between, but 9 full blown, everything else stops seizures. The shortest was a minute, the longest just over 3 minutes. Do you know how long 3 minutes is, when someone you love is suffering, and there's not a lot you can do? It's an absolute eternity. All of these were really pretty violent. His little body is just limp, totally spent afterwards. Often he throws up during the seizures or after. There are a lot of details that have become just a part of our lives that I won't go into here. But one thing I hate, that I absolutely hate, are the thoughts I am forced to think as this little boy's mom.
At times, I feel like there must be something wrong with me, that I am crazy at best, and morbid at worst. When I watch him in that state, I wonder sometimes, do you even want to be here, little boy? He just looks at me with this look that says, you have no idea, mom, no idea at all. When he sleeps too long sometimes, I have the fleeting thought, is this it? Is this the day he had a seizure I didn't hear, and he has choked, and... I shake it off and go check on him to be sure. But the pit in my stomach tends to stay around. We almost lost him once already, and a couple of other times, it was some persistent angels keeping one of us awake when we otherwise would have been asleep, and lo and behold, some giant seizure where he's choking, or gets wedged between the bed and the wall and seems to be struggling to breathe... It is no joke, this regularly having my child's mortality thrown in my face. I cannot describe the way it feels, and doubt I would want to even if I could.
Noah isn't here for himself. He's here for the rest of us morons that haven't figured things out yet. At times, part of me wants to learn the lessons of Noah so that he can be freed of this body that galls him so. Part of me wants to claim ignorance or stupidity for life because I can't bear the thought of life without this little, inadequately wrapped bit of perfection that is my son.
And then I see him soaring through the air on a swing, or jumping gleefully on the trampoline, or cracking himself up with whatever random thing he finds funny that day, and I am grateful. Maybe he'll be convinced to stay a while.
6 comments:
Dave thinks me morbid for often wondering if our child who should have woken hours earlier has crossed the veil. He is only just now learning how my skewed mind works. If I could control all of the thoughts that cross it, I would joyfully let go of the fearful scenarios that run through it constantly.
The feelings that vex me about the dark conjurings of my mind are what I imagine you must feel often wondering about the mortal mission of your dear little boy.
It is exhausting. God bless you, dear mother.
Thank you. You just touched my soul. I love you guys!
Sweet boy.
And what a challenge you have.
Try to live with joy and excitement for each day you do have with him. Don't live in fear. I've been there. Having him, not knowing when he'll go. And he did. If I could go back, I would try to let go of the worry and just enjoy him. You absolutely have a reason to worry and to check him often. Do it. But I learned in a profound way that fear and faith are opposites. They cannot reside in the same space - like light and darkness. That aching feeling in your chest can be out of love rather than fear, if you let the Spirit train you.
You love him more than your own life, and your world would be crushed if you lose him. It's okay to feel that way. Keep your chin up. God knows that perfect little man. And his amazing parents. Don't fear. Love.
You are amazing.
Such a beautifully honest post. My heart goes out to you for the daily emotional and physical struggles that you face while raising such a challenging-and yet, as you said, PERFECT, little boy. Sending a hug your way and praying Noah has many, many more joyful swing and trampoline moments.
I'm sitting in the parking lot in front of FedEx, borrowing their free wi-fi since we still don't have internet at our new place... and I'm crying a little here in my car.
I can't describe the feelings I have for Noah or your family, but just know that I love you guys SO much. And I wish the suffering and anxiety and uncertainty could pass for all of you... and the fun-loving moments could take over permanently. You're in my prayers always. :)
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