Run and not be weary, walk and not faint

I was wide awake at 3 am Friday morning, feeling inspiration that I needed to blog something. After sneaking out of the bedroom so as not to awaken John, I tried hopelessly to figure out how to transfer some notes I made on my phone to the blog. After about an hour, I decided to move onto other things. To my great surprise I came upon John's blog post. I had no idea that we were on the same wavelength. Since I worked a few nights between the hours of 3 am and 6 am on my thoughts, I figure, it's worth the post anyway.

I had another "Perfect Day" moment on our recent holiday. Lucky me!

It was the last afternoon of our 2 week stay in Mallorca. We decided to leave the resort and venture to the beach. After the ultimate perfect afternoon, we wondered why we hadn't done it sooner. We visited the same beach when Axelle was a baby. I remember watching John play in the water with Abby & Hannah, and Axelle squinting her teeny little baby eyes, sitting on the sand beside me.... This time, I couldn't help but think about how much has happened these past 4 years, how much has changed. How wonderful, and perfect I thought our lives were then. And how surreal our lives have been since the births of the twins.... And how blessed we are to still be here, intact, this family of 7. It was heaven on earth for me. I could be back there in a millisecond. Perfect Day, Part 4, or 5, I am beginning to lose count.

So onto my post:

Given 2 weeks without endless running & appointments, I was allowed some time to think about what is important right now, and obsess, a little, too.

I want Parker to walk and run. For the moment, I'll take walk only, but RIGHT NOW, please.

Lord, are you accepting calls? I'd like to place an order...humbly, of course. Because I know you have already answered prayers in our behalf. So many. But I need to pray for more patience while I'm at it, too. PLEASE BLESS THIS BOY WITH BALANCE. PLEASE BLESS HIM TO WALK. PLEASE BLESS HIM TO TALK. PLEASE BLESS HIM TO HEAR. PLEASE BLESS HIM TO KEEP PROGRESSING.

I have become obsessed with Parker walking. He must reach that milestone before he can make further progress by way of speech & hearing, and apparently now schooling. He is not even 2 years old, and he is discriminated against. As it turns out, after the huge decision of the deaf school, they cannot accept him until he is more "autonomous", ie. walking. Sigh.

We saw DR Kossorotoff just before leaving on vacation. She's the neurologist, and always a downer. She said for her, the vestibule is only anatomically located in the ear, it is (of course) linked to neurons. The fact that Peej is not yet walking is neurological-meets-vestibule. She thinks he will walk, but his gait will likely be irregular, not fluid, not "pretty". But when she did not predict that he would walk in 2010 (as did the neurosurgeons), I had to consider how far this boy has come until now, be grateful, and press ever onward.

John said to me last week as we sat side by side and watched Parker climb up the couch, then attempt to scale the wall to get to the stairs at the villa we were staying at, "He's great at climbing! Maybe he can be a climber, even if he never walks."

Imagine a mountain climber who does not walk, with nearly zero balance, almost complete vestibular dysfunction.

I am reminded of a time just about a year ago when John & I were asked to go to a new "bad news room" to hear of Parker's bilateral, profound sensorineural deafness, where we met for the first time, the doctor who would perform his CI, and the doctor who would meet with us repeatedly & regularly to do his mapping sessions for what seemed like months on end. As we waited in this room for the doctors from each team to arrive (neuro, neurosurg, ENTs, critical care), which was obviously a recently converted "bad news room", we saw some paintings leaning up against the wall-waiting to be hung. The first was of some majestic mountains with stiff peaks, and blue skies. I peeked behind to see what the other picture was, as John thumb-typed on his Blackberry. He asked, "So?"... "More mountains..." was my reply. He shrugged and told me that there was a Haitian proverb he learned on his mission: "Behind mountains, more mountains."

Parker Buddy.

In Spain, the girls attended a Kids Club where they made various arts & crafts during their spring break. After seeing us almost daily for 2 weeks, the Director finally asked me in sort of a German-meets-Spanish accent while speaking English, "So do the doctors think that Parker will be a bit slow-ly when he gets older? Are there other cases to compare him to?"

Maybe everyone is asking the same question, but at least not to me, his mama! Or in front of his sisters whose ears prick up astutely when adults ask me questions about Parker's condition.

This, just after I felt several weighty stares as I walked awkwardly alternately holding PJ's hand, hands, arms, chest as he attempted to walk, flailing arms and legs & head, with excitement kicking a ball in the wind several hundred meters on our way to Kids Club.

Penelope adeptly walked ahead, behind, alongside us, occasionally stopping to smell or pick a wild flower.

Rather than feel anger or frustration, for their lack of understanding, or innocent, albeit hurtful looks or questions, I decide to pray.

Sometimes it's all I can do.

So I bow my head in thanks for his life, for his blessing me. For Parker's bright blue eyes, his gorgeous tossled curls, his light, his smile, his zeal, his style. I worry and love & wonder how a loving Mother & Father in Heaven can manage to worry and love each of their children infinitely more than I do mine? It's clearly super-mortal, super-natural, super-amazing.

This is my prayer:

Dear Father in the Heavens, Thank you! Thank you for blessing me, and us with this trial. Thank you for stretching me to grow in ways I never dreamt possible. Thank you for making me stronger, and softer at the same time. Thank you for teaching me, refining me.

Thank you for sparing my son's life. Thank you for giving him back to me. Thank you for allowing me to hold him again, and again, and again.

Thank you. Thank you for blessing me with faith to know that you could heal him and that you would heal him, but chose not to. Thank you for teaching me to accept that it is not I calling the shots. Thank you for making me more humble, more teachable.

Thank you for giving him back to me, whatever state he is in. This baby son of mine.

Thank you for every day I get to hold him, smell him, run my fingers through his curly, thick, beach-blonde hair, while rubbing his feet. Thank you for every chance I get to teach him-how to walk, talk, listen, play.

Thank you for teaching me by your side. Though I am sometimes blind to see you, I feel you there-beside me, holding my hand, putting your arm around me, sometimes holding me up when I fall, when I want to crumble...in the middle of a street, in a quiet room with an ear specialist, social worker, or other someone--talking about my son. MY HANDICAPPED SON. With a handicap card that I seem to have consciously or subconsciously misplaced, who when I arrange for him to finally start school for the deaf, they tell me, if he does not walk, they cannot & will not accept him.

But who would refuse this boy?Who could refuse this boy? I breathe deeply & see his brilliantly blue eyes & huge wide-open smile in my mind's eye. I realize harshly that others who meet him, talk of him, see him, will see nothing but "handicaps". But not you, Lord, and not me. I see through them. I see a perfect, shining, hearing, running, laughing boy. I see him, I know he's inside of there. I see past his anti-seizure meds, I see brain lesions that are trying to heal, trying to fight, trying to battle. Trying to connect neurons to perfection sidelining imperfection. I see the perfection is in there, the potential for perfection, at least, trying to break free of these mortal imperfections.

And I think: What am I? I am but mortal? What am I to do?What can I do for my son, dear Lord? I feel a calm presence wash over me, and I remember. I remember that I know something of perfection. I have seen it, almost tasted it, breathed it in...those sacred ICU days last February and March.

Dear Lord, please give me wisdom and strength, and faith to see through the mortality, the imperfection, and the loathing of meningitis. Help me to see this perfect boy struggling to break out of his carnal shell. Help me to find tools to make the imperfect meet the perfect and be one perfection again.

This is my plead, my prayer in thanks, and deep, somber, humility. I am keenly aware of human suffering now, It sometimes cripples me. I am sometimes crippled with sadness, crippled with heartache, crippled with pain, fear, anger.

I am sometimes fortified with strength, flashes of inspiration, light. I am taken with force in love and hope and courage. I get off my knees, pick up my climbing gear and prepare to climb. With Parker. Alongside him. Just as you are beside both of us.

Dear God, please guide my paths, our ways. Please make my mortality immortal. Please bless me as a warrior woman, a mother in righteous battle--fighting for my girls' virtue, and my son's future. Please keep my husband battling strong, and big, beside me, to give me eyes to see what I miss, ears to hear what I cannot, lift to fight again when I fall.

I pray I am equal to this task. Thank you for trusting me in this, though at times I feel grossly inadequate.

Please help me climb one mountain at a time, in strength and wisdom. And help Parker to climb and climb and climb. Walk and walk and run.

I ran across some scripture that deeply touched me this week:

Mosiah 4:27

"And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength. And again, it is expedient that he should be diligent, that thereby he might win the prize; therefore all things must be done in order."

Isaiah 40:31

"And they that wait upon the Lord, shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk and not faint."

Enduring in faith has this critical component--that even if we are too weary of it all, we come, through our spiritual efforts and strugglings, to learn that there is One who does not weary in supporting us:

"Hast thou not known? Hast thou not heard, that the everlasting God, the Lord, the Creator of the ends of the earth, fainteth not, neither is weary? There is no searching of his understanding" (Isaiah 40:28)

These are my prayers today, that Parker can be diligent, and win the prize, in Wisdom and Order. That Parker can run and not be weary, walk and not faint. Some day. Some day soon. In the meantime, I read Isaiah's words in awe--I know that the Lord does not weary, does not tire, even when I do.

Time

Parker has been taking it easy the last couple of weeks.

With the older girls out of school we had been out of Paris for two weeks and somewhat detached from the different routines and therapies. Now we are back into the full swing.

PJ still struggles for balance when attempting to walk. While it is clear that he has sufficient strength in his body, the coordination in his movement and the fact that he flexes his feet out to a pointed position rather than up causes this to remain a challenge. His motivation is certainly there and when you hold his hands he moves forward with determination and speed but still lacking in direction and skill. When I try and allow him to test his balance by holding him more at his waist, after some short time he walks himself into crawling position where he feels most comfortable. I also attempt to walk with him holding one hand which works for a few steps before he starts to circle around me like a tetherball around its pole. On the soft grass outside of our apartment where we were on vacation I decided to let him go it on his own; he ran three steps and then crashed headlong into the ground barely wimpering. If determination was the only requirement we would be past this milestone. It seems like it is going to take some time.

While he lacks balance, he is a proficient climber. Our vacation apartment was on two levels and he zipped to the top of the tile stairs to the second floor almost as fast as his twin sister could climb them walking. When he turned to go down the stairs he started out head first before we'd catch him. Coffee tables, armoires, lawnchairs, countertops, sofas; somehow he manages to figure his way to scale these items only to get to the top and not know how to get down.

Parker loves water. In the pool float we have for him he leans forward and thrashes his hands in the water and screams for joy until the splashes force him to lean back, blinking the streams of water out of his eyes. He recovers, and then goes right back to it. While the joy he feels at this is evident, it is one of those moments where I have to stop myself from being a bit sad as I think that somehow his ability to experience this activity is limited as we have to remove his implant in order not to damage it while he is swimming. He doesn't hear us cheering him on, he doesn't here the sound of his sisters screaming and playing, he doesn't hear his own splashing or peals of glee. He doesn't seem to mind and continues as if this is normal. Maybe, in time, I won't mind either.

He has been slightly less verbal in the past few weeks. Part of this is probably due to the lack of dedicated speech therapy while on vacation. Renee also suspects that part of this is due to the fact that we are increasing his tegretol dosage (one of his anti-convulsive medications) in order to eventually ween him off of micropakine. There is a nervous sense of hope around this as we are happy to have him on as little medication as possible but attentive to small twitches that might signal a return of the convulsive behavior. In the fall we had three different medicines to control the convulsions. The neurologist who we met with just prior to leaving on vacation said his EEG was the best one she had ever seen for Parker.

Back in Paris the occupational and physical therapists were encouraged by his recent progress. The physical therapist told Renee that Parker has met all the milestones she had wanted him to before the summer, so they now need to fix new milestones.

Spring break vacation was a priority for us this year. The girls have two weeks off and we had planned to be away for the entire two weeks. When the ash cloud from a volcano in Iceland grounded our flight and without a clear view of when we would be able to actually leave, we packed our family of 7 and all of our gear into our mini-minivan and headed out for a 12 hour drive to Madrid where we were able to catch a flight to Mallorca only one day late. As work has been fairly intense for the last several months, I think we all needed some down time to assess where we are and where we need to go.

The last two months have made me reflect on the very different place we were a year ago. I have tried to go back to the blog entries from last year to remind myself of that place. After the first couple of days I stopped. That place is not the same place we are now and maybe I am not ready for it yet but it wasn't easy reading.

At the end of February as we started to grow melancholy over thoughts of the previous year, we remembered our friends who were visiting the gravesite of their Parker. It would have been his 21st birthday, an important age in a young man's life in our faith. Traditionally, at 19 most young men in our church will leave home for two years devoted to God as a missionary; at 21 they would typically return home.

On that same weekend we got news from both Renee's cousin, Jamie and my sister, Spring who had given birth, both of them to baby boys.

But on that same weekend I looked at our Parker, and his twin sister Penelope, and his other sisters Axelle, Hannah and Abigail; each one so perfect in spite of their flaws. And I felt joy.

I realize that it has been some time since I last wrote anything in this space. Mainly due to a combination of not taking time to reflect and not having compelling information to share. Today I felt inspired by the story of another person whose story we have been following who has started her new life. It is worth the 8 minutes on her blog http://nieniedialogues.blogspot.com/