http://www.sandigentryphotography.com/blog/le-petit-prince/We have been in the USA for 19 days now to celebrate our heritage this summer, and be with much missed & beloved family.
Today is my birthday. Me & John & my sweet brother & sister-in-law did a triathlon yesterday. I did not train at all. I haven't exercised for months, maybe even years. I haven't done much more than breathe for many months, not to mention think of anyone or anything else besides Parker, his health, or my other babies, or husband. Or putting one foot in front of the other.
But this birthday is sort of a big one. I feel old, tired, aged, wrinkled from the winds & storms of the past 17 months. But I am still standing, and I am breathing, and I am strong today and happy. I am standing taller than I was 17 months ago, breathing more, deeper, better. I am standing stronger today than I was yesterday. Sometimes I am taken back by my breathlessness, more moments take my breath away, more thoughts take me swiftly to uneven, panicked breath. But it's good. I mean really good. There were months where I never thought I would feel joy again, I never thought I could take on this trial. For months I just never thought...I was too busy doing. Doing all of the things that a mother of 5 in a foreign country with a husband who is away alot, does.
So upon reflection of what this day means to me, as a woman, a mother, a daughter, a friend doing a triathalon on a whim was fantasy. And I did it. I of course didn't win, and we had to persuade alot of sisters & cousins & Grandma to look after our kids for a few hours so we could do this swim, bike, run together. And we did it. I wanted to do it before I turned 36. I wanted to celebrate my "youth" before my crows feet tatooed their lines alongside my sometimes crying, sometimes smiling eyes.
I swam, biked, crashed, and ran. I finished the race. I felt weak and tired. The girls ran the last 500 meters with me, and crossed the finish line alongside me. There was a part during the race where I thought I could not go on, would not finish in time, then I started praying. My feet were numb, and had been for over an hour. I started thinking of Parker and him walking, and running. In my mind's eye, I saw me running alongside him one future day, and then I flew back to present to my lungs closing up, my eyes filled with tears, my pain present and real. Oh, I want this more than anything in this world...
We have a pillow in our bedroom in Paris that sits on our bookshelf that reads"Happily Ever After".
I had such a perfect, easy, lovely life and love before February 2009 and Paris Winter. This pillow to me symbolized the many happy times I anticipated having with my perfect life and perfect opportunities, loving husband, beautiful kids.
But over the past year and a half, this pillow was pushed aside, placed behind books in my bookshelf. I even remember finding it upside down, or backwards at times. This pillow slowly became a mockery of me & my perfect life. My small, insignificant, perfect life, for many many months.
In June we packed up our little Parisian home and came to the States for 2 months. I used this opportunity to clean out cupboards, de-bulk, simplify. And I ran across this pillow. For a fleeting moment I thought it was again mocking me, my past, my future. And I thought perhaps I should give it or throw it away.
But after that fleeting moment, I had a rush of a feeling that came over me. That we are in fact living the "Happily Ever After", now, again, here. I know that people look at us in parks, museums, walking along streams, and they don't see a typical family, or a typical boy. They see an extraordinary, atypical boy. Atypical because he has been on the receiving end of so much love and prayers, extraordinary because he saw death, and chose to return to life. And this life IS me, and John, and four, rowdy, loving sisters.
But these people say, "It must be difficult for you". And I just think, "You have no idea"...
Parker's "handicaps" will be "surdité" or "deaf" or "implanted" or "shunted" or "appareillé", "not walking", "epileptic"..but truthfully they are just labels that doctors or society has chosen for him. To me, he's just Peej with all of those temporary things. He's still small enough that people don't find it that strange that he crawls everywhere, or that he is often in my arms. But the time is fast-approaching where it will become grossly obvious that he should be walking and is not yet.
I thought he'd be walking by now.
He and his twin sister turned two a few weeks ago.
My next goal will be for him to be walking by 2 1/2. I truly think he will be walking by then. Just like I thought he'd be walking by his second birthday.
But if he's not, my next goal will be age 3.
I wonder if I will ever give up hope? I wonder if I will ever stop praying for Parker to be whole. I wonder if I will ever stop pleading with my God to bless my Parker to walk, talk, run, hear, have good balance, have no more brain lesions, or seizures. Or meds.
I wonder if I should?
If I do stop, will the Lord think I no longer desire those things?
Or will He assume that I have (finally again) submitted to His will?
What's right? Or better?
The longer we go and the more I realize that people will (and many already have) stop asking about Parker or including him in daily prayer, I realize it's just another story.
It cuts to my soul when people do not ask about him. When "people" no longer pray for him.
But it's our story. And that will never change. No matter what it brings, this story, I know that we've given it a good run, done all that was expected of us. And that's enough.
Before leaving France, we had emergency blood draws on Parker's meds and emergency EEGs to see how his brain was handling the re-introduced anticonvulsive medication. Dr Q said to me, "Don't even try to understand his brain." as we discussed the treatment plan for him following his last EEG. I was taken back, almost offended for a fleeting moment. Then she said, "The human brain is so complex, we just cannot understand it. There is so much to it that we simply do not understand."
God works in mysterious ways. Like brains, I should perhaps not even try to understand that.
Just try to live it, and enjoy it, happily ever after. Forever.
On my birthday I give thanks again. For my deaf, living, not walking boy, who signs and tries to say "hello", who says "uh-oh" very clearly everytime he drops something on the floor, and today I watched him sign "Jesus" as we sat in front of the Christus statue in Temple Square with lots & lots & lots of cousins, and aunts & uncles and Grandma and Grandpa. I give thanks for the deaf branch that meets in the same building as the Ward Mike & Katy go to, and to the sweet deaf man we "spoke" and signed to this afternoon. We learned the signs for "Paris" and "cool", among many other things. I thank my God for Parker's courage today. I know he is often courageous, but I don't often see it in his walking. John & I were seated in the back row of church with many squirmy, hungry, tired kids all over us. John had 2 children on his lap. I had one. Parker was standing holding onto the chair next to John, which was 2-3 down from where I was seated. As I was listening to the discourse, out of the corner of my eye, I saw Parker walking unattended, in a crazy loop. He was headed towards me in a roundabout way. We were shocked, as he never lets go of objects without our hands letting go first, or us pleading with him to come towards us. But this was a clearly unassisted, unsolicited mama-mission. He did awesome! We've also learned the sign for that while in the States this summer:)
And now we just press forward, and like Joshua says in Chapter 1, verse 9:
"Be strong and of good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."
I know that He is with us, He walks beside us, beside Parker. I know that when He makes us walk difficult paths to make us strong, He wants us to keep our courage, be unafraid. I heard many people during the triathalon say encouraging words to each other, to me along the way. But I heard more than anything else, "Just put one foot in front of the other!". It struck me as more poignant no doubt than perhaps others.
That's what I am doing today, and I pray with all of my soul that Parker can figure out what that means, that his balance can be restored, that his brain can figure out this process, that he will not be dismayed, or lose sight of that goal. And keep on living, and live with us happily ever after.
