I meet people & wonder if I should tell them immediately why my son is not walking or running like his twin, or his head is covered with flashing lights or wait until they ask, or try to feel them out to see if they even want to know or care to know...or just pretend like it is all perfectly normal, because at some point recently it has become the "new normal".
I was telling my dear friend, Melissa, as she shared her very deep, personal grief with me that the hardest part for me may in fact be, "Going on"...So this is it? This is the new normal? This is the new me? Us? PARKER? The phone calls and emails are less, the visits are less, the meals are long gone, the looks on the street are no longer pity or concern, just the usual, "How's it going? Are you plugging along? Do your kids have lice this week?"... And I am expected to plan playdates & be creative and fun & charming as a mother and wife & friend. AND BE NORMAL?!?! When all the while I feel like I am in some kind of a time warp....or blip, or blurp, or something. That the "story of my life" (as it is being written) DVD accidentally got a scratch in it.
For a long time I would feel sheer destruction when I saw a picture of Parker pre-illness. It was like a slap in the face, what he was, what I should have preserved, and did not. His health, his perfect "newness" that all newborns are born with. Tonight as I was vacuuming and saw the pictures of the kids we have in the entryway, I noticed it was "the old Parker" and it didn't gnaw at my soul for the first time. The old & the new Parker are finally reunited and merged for me. I don't need to distinguish between old & new. It's not "pre-illness" or "post-meningitis", it's just Parker, my Parker.
But does this realization make things easier?
Easier that I can no longer feel the prayers lifting me out of bed each day? Prayers that guided me & my actions & the many doctors in his treatments for months & months? So, yes you are thinking and I am echoing, "His needs are different now. Thank the Lord he does not NEED all those prayers that you used to physically feel. Thank goodness he is better." The good news is, "Yay. He is better." This is true. But what does "better" mean?
And what does it mean in the long term? Better for him. Better for my brain-injured child? Better for my implanted, deaf son who does not walk or run like most 19 month old boys?
I actually do not even consider my son deaf, if you can believe that. I asked John his feelings last night, he agreed. It's miraculous. He hears. MY DEAF SON HEARS. Oh, he simply cannot hear when his machines fall off or malfunction or we take them off when he sleeps. Other than that, we don't consider him deaf. We think he hears. We know he hears. We do not know what sounds he hears, but we know that he hears. He hears & differentiates sounds. We pray these sounds will allow him enough distinction to speak & speak clearly. I think it will be so. He hears electronically. He turns when you call his name, turn on the television, the doorbell rings, the microwave beeps. He dances when you sing to him, when the IPOD is turned on. My deaf son hears music...and dances. You might call it swaying while he is sitting or kneeling, but I call it dancing.
And so I am left here. Left here to sort it all out. The rest of my DVD life story, after the scratched part. That's it? This is it? Our life: Parker's story.
My friend, Melissa is amazingly beautiful in every way. She points out to me that as one fine author put it; "The double hurt is that grief always outlasts sympathy".
I asked my mom what she thought about people not knowing how to deal with other's serious & painful grief. She gave me 3 responses:
1-"They can't. They just don't know what to say."
2- "They think the sorrow is gone. They don't get it!!! They think that if they bring it up it will actually make it worse."
3- "They see you carry on in love & service & they just forget."
Forget?!?!?!?!?
They forget. She says. We are, in fact, left in the dust & we hear silence & the curtain goes down & everyone goes home. The popcorn is strewn all over the floor & the only noise you hear is the usher vacuuming in the entry of the theatre....and your very heavy breathing & your heart pounding in your chest & throbbing in your ears.
Welcome to the First Act. You are the star (surprise!) of the show. This is life....and we signed up for it? We signed up for pain & suffering. Sure I will take it, but I want to choose which trials I get from the "Trial Bag". Which would you choose?
We were a young couple & were called to a Stake calling in Phoenix AZ as "Ma & Pa HALL" for the youth to do a re-enactment of the Mormon pioneer handcart company crossing the United States plains. It was amazing. Inspiring. Hard work and alot of fun. We had 10 children (all aged 12-17) and one rag doll baby. We were 22 and 24 yrs old ourselves. As we pulled & pushed & sang & walked & walked & walked in the Arizona desert, occasionally a member of the Stake Presidency (local church leaders) would ride by us on horseback, encourage us, ask if we were well. But they would also "force" us to choose a trial from a bag of trials that they had with them. In the bag of trials things were written as such, "Your water supply has become contaminated. NO drinking water for 1 hour...." or much worse, but of course it was a rag doll named SAM, not a REAL baby..."Your baby has gotten sick & died. You must stop walking with your company, and bury your baby before continuing onward."
I think about that all the time. I think about the bag of trials. I think if I knew all the trials there were to have in this life, which would I choose? They are all awful, right? THAT IS WHY THEY ARE CALLED TRIALS.
We buried our baby rag doll while the rest of the company moved on...and then we pressed on. Onward.
We are lucky enough not to have chosen (as of yet) this trial from our trial bag. Instead, we chose other trials, other pain, other suffering. But our pain was wide-open-gaping-enough to understand & comprehend the worst of all pains & sufferings I can imagine.
No, we did not bury our 8-month old baby boy, in France or fly his little body back to the USA, but we had the discussion. We sat in the Bad News Room outside the ICU and had that discussion. Before all the lights were turned off, all the machines were turned off, all the words of this story were written.
And I can tell you that I ache, I sob, I wail in sorrow for those mothers who have walked that path, who have had that be part of their story. Even now, my head hurts from anguish, my breathing shortens, suffers, my ears ring. I cry. I hurt for sadness & sick and buried children, young or old. And their parents. Mostly their mamas.
So how do I go on, is the first act over? Am I changed? Have I learned what I must? Now that I am actually feeling better than I thought imaginable for the past 11 months, am I forever changed? Forever softened, forever mournful with those who mourn, and sorrowful for those who sorrow?...and this while I feed & comb hair & dress & teach my 5 creatures the meaning of life, and how not to get sucked up in insignificant things... In the scratch.
So do I "press forward with a perfect brightness of hope and a love of God and all men"?...Do I have a choice?...You bet I do. I chose this. I chose this life. So did Parker. He chooses to keep on smiling, and John encourages me to support him in that. It is impossible not to. His head turns back, his nose squishes up and in that toothy grin, you can see only good things come from that little boy. There is no malice in him. He is trucking along, and we must, too.
I never doubted for a moment that Parker would not be healed. I stood firm in the faith that he would be healed. But it was easy. I literally had help from all angles lifting me up, keeping me going for months. It is actually harder in many ways now that I stand on my own two feet. It is good, yes that he is less critical, and this is why angels are no longer carrying me. But I miss it. I crave it. I want to be in the presence of angels again. It took me months before I realized I had no choice but to redescend to this planet. This is where my family was afterall, and all of the people I cared about. But I wanted to be THERE, not HERE. I wanted to know things that THOSE PEOPLE knew. I felt it.
Then I would guess that it took me a good 6 months before I even BEGAN to process what actually happened to Parker, what happened to my baby, what happened to us. There were many out-of-body moments. Then we settled back into Paris & a busy therapy routine in all aspects in the Fall.
Now that things are slowing down, and we are fast-approaching the year mark, I am more afraid than I ever was before. Afraid of the new chapter. Afraid of the less critical phases, afraid of the "Ever After" not being what I had anticipated.
My brother always told me, "You write your own story." I always believed that. Until now. You determine, yes, how you react in your story, and you have much control of most things that you do in your life. But there are some things that just happen. That a Big Script Writer scripted that are unchangeable. This is what I am struggling with now. It was easy to have faith before, faith he would be healed, faith he would be well, faith he wouldn't need this or that. I was frankly always surprised when his scans came back imperfect, because Parker in my mind, was saved, he was already healed, COMPLETELY healed. When it came time to implant him, it was a harsh reality for me. I thought his hearing would come back because I prayed it so. I believed it. I knew that God could make it so, I still know that He can. It's the fact that He didn't and hasn't that makes things a little harder to swallow. That makes me really think it is not I calling the shots. It is not me who is in fact scripting the story. This story.
So I remain faithful & watch & listen & pray. And wait. And work, And smile, This is it. This is my life, Parker's life, Parker's story. A story of a deaf boy who lived, and I am his Mother.
Lucky for us, this story is not over.
