Living Happily Ever After

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.

Turning 2 into the Summer

Parker is now 2 and is experiencing his second summer in the US.

A few days before leaving for the US, he had a blood test and an updated EEG to check whether the new anticonvulsive medication dosage levels were therapeutic and having the desired effect. Neither test was overly positive but he still does not seem to have had any repeat seizures.

He continues to work on finding his balance for walking and we continue to try and find new ways to stimulate that. Renee and I would walk him up and down the aisles of the airplane on the 11 hour flight to the US holding on to both hands then trying with just one. He did well with the walking part of this but constantly would stop to interact with some new neighbor or try and reach out for a cup or candy wrapper left on the floor.

We also received as a birthday gift from dear friends in Paris, a new device which is somewhat of a jump suit which has two straps to hold from above; almost like a puppetteer managing a marionette. When PJ is in it he feels that he has complete autonomy but you can support and direct as needed. Yesterday was the first day I had a chance to use this with him and for several steps he would walk with no support and my heart would leap as I thought "He's got it!". Then he would crumple towards the ground into a crawling position or veer to the left to try and pick up a cigarette butt or a flower. Renee said that he was doing better when we put a ball in front of him and he kicks it along to keep his concentration.

This week Renee has taken to a long piece of fabric passed under his arms, around his chest, and twisted behind his back. This allows for less aching backs while accompanying Parker on his walks, and seems to be equally beneficial for him.

We are also continuing to do some free walking between two people. I haven't seen significant progress here as he is still steady enough to make a few steps and then crashes to the ground or into the arms of the other person. He does seem to be doing better at the crashing as he is managing his fall with a little less brutality than the previous face-first dive to the ground. He now seems to bend his knees some and braces his fall with his hands. He almost always veers to the right when walking and when falling. He also is doing better about who he will do this exercise with. Previously it could only be between mom and dad and even sometimes he was not keen on leaving mom to go to dad. Yesterday he was going between Hannah and I and each time he would arrive at either of our arms he would turn around with a large toothy grin and give himself a well-deserved applause. Penel has identified this as an interesting and fun game as well and when Renee and I start to do this with Parker, she will sit on one of our knees and wait for her turn and then mimic the same motions as Parker including the falling into our arms and clapping.

His hearing is also progressing slowly. We have been better about using the traditional hearing aid for his left ear and he has been better about not pulling it out. just prior to leaving France, Renee visited Anne Keroudin, the audio prosthesis person. They tested the implant to make sure it was functioning correctly but also did an audio test with just the hearing aid on and he responded to some sound multiple times which Madame Keroudin took as a clear indication that there was effective stimulation to his left auditory nerve as well.

His implant continues to fulfill it's purpose when it is functioning properly. Perhaps a two year old puts a bit more wear and tear on the device but we seem to have recurrent problems making sure it is on. There are several sources of potential issues as there is the battery pack, the processor, two different cables, the external magnet and then, potentially, the implant itself which is under his skin and attached to his skull. This week Renee could not get it to turn on at all, and so Parker sat deaf and quiet for two days while I was travelling. I had picked up some spare parts while back in France and on Saturday morning I hooked him up with the newly re-functioning prosthesis. I was a bit concerned that it would be a shock to his system after so much time gone from the hearing world, but I started it out on the lowest setting and as soon as it made contact with his head, he started smiling. His sisters were there with me saying his name and smiling. And he started to laugh, deep from his belly. Renee cried softly in the next room, after days of intense prayer.

Peej also met with Annie Dumont, the speech therapist in France who pioneered working with profoundly deaf children. We had been recommended to her by several people as the expert on which school we should have him attend. We had also been getting some mixed messages concerning whether or not it made sense for us to continue to raise Parker in a bilingual environment; some suggesting our best option was to move to an English speaking country and others suggesting that we should only speak French in the home. Madame Dumont was very impressed with Parker's progress and said she was surprised at how he did compared to what she saw in the reports. She also told us the richness is his voice is due to the English we used in the home and that we should definitely not abandon that. Additionally, she saw no reason that we should abandon French either as it gave him an exposure to a wide spectrum of sounds which was more stimulating than a monolingual environment would provide. She also unwaveringly validated our choice of CEOP as a school, saying the other was not the appropriate environment for Parker to be in.

The principal reason for coming to the US this summer is to meet up with family and friends. As a child my most vivid memories are around summers spent at my maternal grandmothers house in Salt Lake City with my 18 first cousins from New York, Kansas and Utah or with my dad's sister Jackie and her five children on their farm in Layton, UT. I wanted to capture a part of that for our children so we planned on spending 3 weeks in Utah starting with Independence day weekend and ending with Pioneer day. If all goes to plan, we anticipate that all five of my siblings, all of their spouses and their 15 offspring plus my parents will be together for a couple of days around July 24th.

It has been interesting to see the interaction so far that the children have had in this vaguely familiar environment. The almost constant sunshine and blue skies, large houses and expansive stretches of marginally inhabited landscapes bordered by towering mountains stands in contrast to our life in Paris. The stimulation of being around so many children and so little structure has been a welcome change. It is also interesting to see how people have been reacting to Parker, and he to them. Yesterday while at the park I heard Abby defending why Parker had so many wires attached to him using very complicated terms (meningitis, cochlear implant) using tones which conveyed the sense that even she understood that he wasn't supposed to be like this.

Parker himself is working on what appropriate levels of social interaction are with his peers. He has recently taken to a recurrent game of stealing Penelope's pacifier whenever she walks by and then laughs at her indignant plea of " garker ginky!"; something he has re-created with his 2-year-old cousin Jackson with a similar reaction. Upon meeting his 5-month-old second cousin Brandon for the first time the only way he could determine to express his excitement was by laughing and hitting him.

Parker and Penelope are two now. Penelope can say every member of the family's name as well as several of the words and phrases. She has started to have some semblance of blond hair and is a bright, if not overly obedient child. She looks exactly like my baby pictures looked. She has taken to equal treatment demands recently and if Parker is getting carried, she wants to be carried as well and will lay down in loud protest wherever she is (parking lot, entryway, sidewalk, park) until her requirements are met. Longer term, more than any of the others I worry about how she will cope with Parker and his ongoing struggles.

We are now nearly 17 months post meningitis and some days we still struggle to cope with heavy questions as to why, when and how. On a trip to Manhattan last week I stole two hours away at the LDS temple near the Lincoln Center and found solace and reassurance in reflecting there. While Parker is not at the level he would have been had he not gotten meningitis, he has progressed physically and mentally past the level that he was before he got sick and that is an immense comfort. While we would welcome an increase in the trajectory of his progress, most days it is enough that the slope is up, even if that means it is uphill.