Contrite. What does it mean? Humble? Am I humble? I feel like every time I am getting off my knees to catch a ball at third base, there is a runner sliding into me & taking me out. I feel like I should be angry, and the psychologists keep asking me, or probing me for info, and all I want to say is that I’m just really really super-duper, abysmically sad. I feel like my heart has fallen all over the floor & I scramble to clumsily pick up all the pieces, shove them back in, and try to keep on keeping on. Then I wonder how many times this can actually happen before I lose a piece of my heart, or if there are pieces that are misplaced, what that actually does to one’s heart.
Remorseful. Contrite means remorse.
I lost it again this week. Just when I think “all is well”, usually fatigue sets in & I just fall apart. Hannah asked me today, “ Who is your favorite child?” Horrified, I responded with a question, afraid I may already know where she was going with this….“Who do you think?”, I responded. She said, “Parker” without blinking an eye. My heart shattered. I tried to think of the right book answer-meeting the mother gut feeling-meeting the Spirit that guides me, that I pray for every single day as my days slow waaayyyy down, and I wonder what on earth we are all doing here? And how on earth this happened to Parker, me, and us? “ Why Parker?”, I responded. “Because he is deaf. “ was her reply …I asked her if she wanted to be deaf, after reassuring her that I loved each of my children infinitely, and none more than the other. “No”, she does not want to be deaf, even if it may possibly solely win her mother’s greatest love in her eyes. Not worth it, she decides.
Interesting. I have been spring cleaning, trying to come to terms with the fact that the emotional aspect may actually finally be separating from the physical aspect for me, and how amazingly long it has taken in this story. This could be good and bad. Good, because in essence, it means, I can ask hard questions to professionals without tears in my eyes, and they finally may think I am ready to hear the answers they have to give. Bad, because I may actually be building up a tolerance for this new reality.
Spring cleaning: My house, toyboxes, clothes, my email inbox with 200 and something unread emails from last February & March. I wanted to read them all, revisit all of the stories, anecdotes from all of the people, the friends, the earthly angels who carried us through Necker days and prepared us for Trousseau and implanted children days. And thank them one by one...I think it is partly spring cleaning of my shattered soul. It’s good and bad. Good because it must mean something psychologically, that I am finally willing to go there, bad because it means some sort of closure for this critical period for me. Bad because I don’t hear or see or feel the flutter of angel wings anywhere these days. Though I try. I miss them.
Patience: Man, I thought I was patient before. I thought I was loving & kind, and patient and long-suffering. No idea. I HAD NO CONCEPT OF WHAT THOSE WORDS MEANT in retrospect. I wanted to, and I aimed to, but truthfully could not give them even an inkling of what they deserved by definition.
Patience means facing it with courage & faith & grace. Patience means being firm, steadfast and immovable. Every hour of every day. Patience is actually working towards worthy goals. Patience is not simply enduring, but enduring it well. “It transforms ordinary men and women into saints & angels”, said President Uchtdorf in General Conference last weekend. “Patience is the ability to put our desires on hold for a small time, and is a rare virtue.” He said, “Without patience, we cannot please God, we cannot become perfect. It is a purifying process that refines understanding, focuses our action, deepens happiness, offers hope for peace.”
I believe it was President Brigham Young who said, “ Give me patience to wait until I can comprehend it myself” in his prayers. Then would actually pray until he did.
I must do the same. I keep referring to the peace I felt those days in Necker when our baby son teetered between this world & the next. How I was not stressed, how I felt confident that he was in God’s hands. I had no doubt. I still have no doubt, but things get muddled back in the real world, with daily, seemingly incessant complications & infections.
Finally yesterday I received an answer to a question I had been asking for months. Parker woke up with a slight fever. And again I noted some neurological differences. His diaper infection seemed to resurface after 3 or 4 days of stopping the antifungal treatments from last week. He had 2 mega-important appointments on Monday & Tuesday of this week, and I wanted him to “pass with flying colors”. He awoke out of sorts on Monday, and we hurriedly dressed & fed him for his trip to CEOP for an audiogram, and his last interview there with the health professionals before they completed his file for admissions. I found myself thinking he was having some kind of vasovagal response to constipation. He was sweating, with labored breathing. I gave him his steroid breathing treatment plus the ventoline, to be given in times of asthmatic crisis. Nothing seemed to help much. His appetite has decreased the past few days. I was looking for anything to raise his blood sugar. He did well on his audiogram, despite the fact he was less energetic than usual. He seems to be hearing consistently at 40 decibels. He can “hear” loud whispers, with his implant. The doctor there said he had an otite serous, on his implanted side, and we should get it checked out, but nothing to be too worried about since it is clearly a chronic condition.
Tuesday we were scheduled for his 6 month review with the ear team at Necker: the speech therapist, 2 students, and the psychologist assigned to all implanted families. It was not as stressful as anticipated. They all seemed pleased with Parker's progress, physical and lingual. The surgeon took a look at his ears, and an abnormality on his scalp, where his magnet is placed on his implant, and said to be cautious, since we will be going away for spring break the next weeks, he would recommend an antibiotic for 10 days, and a few other treatments. He also said that after a child suffers from a cerebral infection, for a few years afterwards, a fever will be very difficult on his brain. This explains finally why every time he gets a little sick, I think he may actually die again. Thank you, Dr Couloigner. I asked Parker to blow him kisses goodbye, and he did. The doctor was so visibly pleased. I was, too.
Today, Wednesday, we saw the dermatologist who thinks his rash is not purely fungal, and gave us some steroids to alternate with antifungal creams. Bad news is he thinks he has psoriasis, which he did not tell me outright. I just read it at 3 am in his carnet de santé. Humph.
Monday I was ready to throw in the towel. Tuesday night my heart fell all over the floor upon a late return home. Wednesday I am thinking of my new perfect nephew, and his fair complexion, and his round head, and his pajamas that so-resemble Parker’s at that age that I can hardly stand it. Hardly stand that he no longer exists, my perfect-before-meningitis-baby boy. Hardly stand it that he is not standing, hardly stand it that the doctor at CEOP informed me that implanted kids must go in every 10 years or so for another surgery, hardly stand that my heart is so broken, and so contrite.
And yet, I pray. I pray for patience, I pray for faith, I pray for understanding. I pray for more love, more hope, more time. I pray I am doing all I can do to help this child who is no longer “perfect” and whom I know never really was “perfect” to become perhaps “perfect” again someday, in a perfect Godly, sense. In this life or the next. I see the 6 year old in the waiting room in my mind from yesterday with an implant on the same side as PJ, and wonder what was his story, wonder what he really hears, wonder if he has sadness, wonder if he has brothers who think his mom loves him more because he is deaf. Wonder if his mom actually does love him more because he is deaf.
I pray he will walk. Walk. Walk. Walk. Then Run. If he does not, I find out, by the Fall, he will not be able to attend his little school for deaf children, with other deaf children in the 15th arrondissement of Paris. He will do speech therapy at home with Mom.
I wonder if he will walk. We are talking about a new car, one that may need to accommodate a wheelchair in the future.
I saw a boy today, an older brother of one Hannah’s best friends, whom I have only heard of for months overcoming great trials & sickness & affliction, who walks. His gait is atypical. Yet he walks. I wanted to run to him, hold him, love him, rejoice in him, his triumphs, and his parents'. And yet, I just said, with a lingering smile, “It is so nice to finally meet you!” I could see through his neurological weighty-ness. I could see beyond his camouflage colored, molded specialized chair at his computer, and his head turned ever-so-slightly to the left. I could see this perfect boy, hiding behind bodily imperfections. As his mother told him to wipe the chocolate from his mouth, she was excited to show me all of his walkers, proud to say, ‘At home, he does not use them or need them, you see.” And I wonder. He was 6 years old before he walked. She told me he never crawled as well as Parker does now. But this sweet boy has not got a vestibule that is destroyed. He has different difficulties: a different bacteria that changed his destiny.
Patience, that the promises of the Lord if not always swift, are certain. I know what the Lord promised me in that ICU room with 2 worthy priesthood brethren that dark day in March, when Parker would not & could not stop seizing in his coma. With cords, & wires & machines & beeping & medications & potentially ototoxic doses: That this child, my child, God’s teeny child would be healed. That patience means active waiting & enduring. Patience is working, hoping, and bearing hardship with fortitude. It's not simply waiting it out, with a broken heart and a contrite spirit.
