Breathe thankfully

Tuesday when I held Parker against my chest trying to keep him from grabbing all of the electrodes on his head, my (& the EEG tech's) reflex was to sing to or shush him, while trying to keep him still. It didn't work of course because we had removed the CI to make room on his little head for electrodes & sand & water & rubber tubes. He could no longer hear. I felt a strong impression to hum to him. This way, he could at least feel the vibrations (& love), even though he could not hear the sound. The songs that came to me were ones that I know were heaven sent. They have been in my forebrain for too many months now. "Souviens-toi mon enfant" and "Be still my soul"...He calmed & quickly went to sleep (as required for this latest EEG). I held him in my arms, tears streaming down my cheeks as I looked out the window at yellow leaves falling from the trees outside.

I cried for the witness of God's love for me, and for us at that moment. I cried for the knowledge I have of heavenly things. I cried for the whisperings I get from heavenly beings, telling me to push onward, and earthly beings who tell me to keep on praying. I pray alot, unceasing. I pray for all of my kids, not just Parker. I pray harder & better now than I did 9 months ago.

I cried for pneumoccocal meningitis, I cried for my son's hydrocephalus, and the tube I feel running down the length of his chest every time I hold him. I cried while looking out the window longingly at the falling leaves for recognizing we were hospital prisoners for only 45 minutes this time. I cried for those days I sat inside Necker, without air, without unassisted breathing. I wished I could run out of there with my healthy baby & never come back again. I cried for the fact that this road is only walked down once, and there is no retracing of steps. I cried for the headgear my son now wears, inside and outside of his head...as well as the fact that I am now grateful for it. Before I could hardly stand to see a picture of Parker's implant. He turned & I got this one by accident & I felt no anger or defeat for the first time.

I cried for my friends whose mutual love grows deeper & more real with the lines on our faces. I cried for sick babies everywhere. And for their mamas... and papas. I cried for the fact that every time I see a healthy boy walking, I wonder if Parker will walk. I wonder if he will ever hold his head up straight, for an extended period of time. I wonder if he will crawl as fast as Penelope... Ever? I wonder and wonder and wonder. I wonder if my prayers & the girls' for Parker to "crawl & walk & talk & hear" that also now include "have good balance" and "heal his brain from this illness" will come to fruition in this lifetime or the next. I wonder if I am learning what I must...and with grace.

I ached. I ache in deep, real sadness, but also for the sense I feel in every fiber of my being that "this" is heaven sent and we are slowly learning here what we are meant to learn...

Today is Thanksgiving. I am thankful.

I am thankful for so much I couldn't even begin to name it all. If I tried, it would never give adequate meaning to words. As we sat at the Thanksgiving dinner table tonight I was surrounded by dear friends, and one acquaintance. She rightly & unsoberly said, "So in my family at Thanksgiving we have to say the one thing we are most thankful for during the past year." A little surprising to me, I lost it. Are we still in 2009, I thought..Is that even possible? Of course my eyes filled with tears & it went without saying. We left it at that.

But while I held this beautiful baby boy in my arms (that seem weaker with time), I was reminded of heavenly things & I prayed intensely. I prayed this child's brain could be healed. Healed from this terrible illness. Healed from this trauma, Healed from this year....and I felt peace. It goes without saying that I know we must suffer & endure in order to truly appreciate joy & goodness. I know that he may never be the same boy he could have been, but as I know we are better because of this wretched illness, I pray that he will be, too. I felt peace. I felt peace with whatever that brings...on a windy autumn day, with yellow falling leaves.

Parker has been seizure-free for 14 days today. What joy saying that fills my soul! He is crawling, pulling himself up to standing on furniture and people. He is hearing systematically & imitating sounds occasionally. He laughs & laughs & laughs and smiles. He made me cry from belly laughing so hard while watching our friends' kitten run & jump across the room a few days ago. He has never seen a kitten before. It was pure heaven to hear those laughs. They resounded in my heart and my dear friend's entryway. She laughed & cried with me.

As I reflected on all of the things I was thankful for today, I was very thankful that John was not hurt while being mugged on Monday. I was thankful my 8 year old is learning her times tables, and actually still welcomes her mom into her classroom to do a Thanksgiving presentation. I was thankful my 6 year old still prays for the neighbor upstairs who lost her husband nearly 3 weeks ago. I was thankful for an indeterminate number of hugs & kisses from my 4 year old after school who does not usually freely give of such things. I was thankful for a healthy baby girl who bosses me around as much as I am around. I was thankful for a giggling, standing boy in his crib after midnight tonight...and a myriad of other things.

Among which was the following message I had in my inbox upon returning from our lovely Thanksgiving dinner tonight. The doctor who follows Peej at Garches is a smiling mother (of 2 boys) from Spain. We often speak in english to one another, but she emails me frequently in french or spanish. She follows Parker's case with as much vigor as I do. You will become endeared to her as we have. She calls me by my first name, which is unusually informal in France...Never mind the grammatical/spelling errors, this is her 2nd or 3rd language:

Begin forwarded message:

Dear Renee, I am so happy to tell you that Parker's EEG is absolutely beautiful and normal !!!

this means that the whole medical treatment seems to be actually very adequated at this moment, probably the better effect comes from tegretol because before now we had several points with abnormal activity in the EEG and they are now disappeared! what about the crisis or episodes of fixed or dreaming eyes? is he also free of them now?

If it is the case, I do not think it is good to change too much in this moment, also because he is doing so well in his motor and global progression

Drug levels are a bit under normal for both tegretol and depakine, probably because they both interfere in each other's metabolism. I think that they may be acting in cooperation and are being effective at low plasmatic doses becaue they may be working simultaneously to potentiate their effects. I am not sure that this will happen with one drug only)

We'll discuss it tomorrow, but I'll be very happy to maintain everything as it is if Parker is doing well (may be just stop progressively urbanyl) and then wait until january (after christmas, so we will assure a certain period without changes), giving him a good covering treatment and just waiting for his improvements and leaving you take a breath for a while

Let's see tomorrow
estoy tan contenta
hasta mañana
sqr

Me too, estoy tan contenta, and I will happily take a breath for awhile. Of outside, autumn air with falling yellow leaves. Thankfully, I weep.

Light

Parker is doing much better this week and we have been encouraged by his progress.

On Tuesday he met with Dr. Laccourreye who works with the adjustments for the cochlear implant. She believes at his current levels he can process sounds at between 40 and 50 decibels. Whispers are at 45 decibels so we should now be at a baseline tuning his implant where the mechanical part will become less of an issue and we will be much more focused on the speech therapy. We don't have a scheduled appointment with Dr. Laccourreye and will likely see her every six months to a year from now on.

Parker has also made strides in his physical progression. In the mornings recently we have come into his room to be greeted by him standing in his crib holding on to the railing. He has mastered moving from a prone position to a sitting position as well as a sitting position to a crawling position. When he stands (with assistance), it is fairly unbalanced and he ends up falling quickly. His desire seems to outpace his physical ability and he seems to process the fact that everyone around him is upright and moving. On some level this is hard to watch but his natural interest and curiosity is what the doctors say will push him forward. The physical therapists at Garches were very encouraged by his recent progress and while Renee suggested that maybe we should increase the number of times we went Garches they discouraged this due to the fact that he will get more out of his own personal therapy moving about than what they can address. He will continue to go there for monitoring & to check for muscle tightness or abnormal postures or movements. They give Renee specific muscle groups to stretch or work on each week she meets with them. They are always surprised by his progress. They did recommend that we get a helmet for him as they anticipate he will be banging his head and falling a lot. They say this is normal and he will have some bruises but given the amount of hardware in is head right now and his propensity to seizures, we do need to make a point to better protect his head.

He continues to have episodes of seizures sometimes multiple times a day. It is the same spasm with his eyes briefly rolling towards the right & backward and his arms going to the side almost as if he is shrugging or being startled. Each spasm takes less than a second and he will have a series of 5-10 over a 2-3 minute period. They seem to be triggered when he is tired, or hungry or thirsty. He is on three different kinds of medications to control this but the doctors are still working on the correct dosage and mix. The fact that he keeps putting on weight also factors into this equation. While discouraging for us to witness, Parker seems to be handling it better now than he did before. Previously he would become very upset (not typical for him) to the point of being inconsolable and he would seem to blank the rest of the world around him out. At some point he would get a terrified look in his eyes & seek us out for reassurance, all the while being very quiet. He now seems to continue on with what he was doing. Yesterday while playing with a toy he started a series of seizures and he continued right along playing between each spasm.

Obviously every parent thinks their children are beautiful; we have thought this for each one of ours. Parker is somewhat special for us. It is not so much his bright blue eyes, his cherubic little face or his disheveled blond hair. It is something about the way he lights up when he sees us from across the room, or when we do a little sign language to him or when we greet him in the morning after he has woken up. It is always the same: a combination of a toothy, opened-mouthed grin, with his eyes and nose wrinkled up as he tilts his head back as if he is basking in some ray of warm sunshine that emanates from our direction-- yet we are the ones who sense that we are being filled with a sometimes blinding level of light.

I have realized that while Renee tends to get concerned about individual details where the doctors make notes of problems, I am mostly optimistic as long as I get my dose of sunshine from Parker on a regular basis. A couple of weeks back when PJ was having problems breathing, one day when I went to get him out of his crib he laid there wheezing and struggling for air with an expressionless gaze. When I walked to work later that morning I couldn't shake that image from my mind and the many times I saw it previously in those days at Necker. A flood of emotion and concern came over me as I feared that somehow I would lose him and wondered if I was foolish for leaving him at home in that state.

He recovered, but I remembered thinking how fragile and vulnerable I still felt, and not just for Parker, but for any of my children and I desperately felt that I had to better control the situation or I would break down. As I thought, more rationally at what that might mean I realized that this is impossible. I am now working on my ability accept that somedays the sun won't shine and I somehow figure out how to soak up its' rays on the days it shines brilliantly.