I had no idea that I would completely fall apart as I waited, waited, waited. Waited today, in another operating room waiting room.
I sent my 4th out of 5 children to surgery today. It makes 5 total for the girls & Parker's 6 for a total HALL offspring surgery count at 11 to date. Eleven more than any mother wants for her child, or children. I never broke any bones or needed any surgery until I had 3 children, and that surgery was elective. Surgery is not something I want to know too much about.
I entered the clinic today with surety that we were doing the "right thing" getting this "minor" surgery for Axelle's ears. She has almost 40% hearing loss in both ears (temporary, we hope) and these tubes will put her eustacian tubes in the open, allowing her to hear better immediately. But truthfully, what surgery is minor? Especially for a worried mama/papa in the waiting room? But the fine print of this surgery said, "In rare cases, could cause deafness". Humph, I think to myself, "Does lightning strike twice in the same place? Or are the chances greater because of some unseen predisposition?" Clearly, we've got this predisposition. Bad ear genes. Me & Penelope are the only ones in the 7 without surgically-assisted (albeit temporary for John and the girls, or permanent in Parker's case) hearing.
I couldn't help but think as I sent her to surgery in her new pajamas and Pet Shop caterpiller "doudou" named "Minty" that I could be sending my hearing deficient Axelle to surgery in hopes to improve her language and audition, but she could actually return permanently "handicapped" and completely deaf in our hearing world.
Of course I thought of the similarities of Axelle and Parker when they were in the bath together last night. They look more like twins than PJ & OP, their blood type is the same, and shared by no other family members. Yes, they are alike, they surely look alike, but she is atypical in so many ways, so beautiful and unique. SO AXELLE. So unpredictable & hard to figure out. In the back of my brain I thought, "Well, at least she knows alot of signs, and she could get implanted, and then we'd have some solidarity for Peej"...worst case scenario. But still, trying to look at the bright side of things.
As I wait what seems an interminable amount of time for her 5 minute surgery to end, I can't help but reassure myself all is well in paradise, all is well here. The sun is shining all around us, after this long, cold winter. But I also think, "What if? What if? What if?"
I walked into the clinic on time, sure of our destiny, only to find we were meant to share a room with a 14 month old girl and her parents, who also awaited her surgery. Two hours later, I am not reassured by the fact that her surgeon is also Axelle's surgeon, and why on earth is it taking so long for her to exit the bloc?I see this little one running, walking, babbling, and she is tired & starving and waiting.
AND I LOSE IT. I am reminded of my little one at home, of my little boy who was designed to walk & run & babble, and yet does not. I am reminded of a harsh winter only to be followed by another. I am reminded of my hopes that he would "snap out of it" or "snap into it" in relation to his brain and be like other "typical" boys, and realize that he is not typical, or no longer typical. He is no longer ordinary. He is extra-ordinary.
I see these very worried parents as their baby finally goes to surgery & think to myself, "Man, they have NOTHING to worry about & yet they worry". Can I reassure them? Should I? Should I even tell them of our heartache & sorrow? Will it make their suffering less? I decide not to, I decide my heart & soul would be wasted on them, and their walking, running, babbling, non-pneumococcal-meningitis-infected-14 month old.
My sister called & asked why I seemed "Not ok?". My mom called & asked if I "survived?", She said, " I knew this would be really hard for you." It always will be, you cannot be the same, you will not be the same"....it's not right or normal or expected to send your baby to the "bloc" with an unknown & trust them implicitly to care for your little one. The block. Not normal at all.
I saw this little girl running with ease in her slippers & hospital gown open in the back & thought I just want so desperately for Parker to walk & run. In most ways it is harder now than it ever was then, in that coma, in that prison-called-Necker-last-winter. I walked with angels a year ago today. They carried me with out-of-this world love & concern & ease & comfort. The Holy Spirit was my constant companion-for 6, 7, even 8 months or more.
Now I am left with the reality of and pieces of my "handicapped" son, with brain damage(?!) who does not walk or run. Who does not babble. Who does not stand unassisted, like babies much younger than him. Who is deaf, who hears.
I know I am to learn patience, and rely on the Lord. I had no idea for how long. I had no idea what He would ask of me. I could easily shoulder some burdens for a short time, very heavy difficult burdens, but medium burdens for an indeterminate amount of time? It seems too much at times, too heavy for me. My shoulders & back are too weak, shoes too worn.
I know I am not alone. I am never alone, but I often feel alone, surrounded by people. It's surreal. I walk on a plane not many others walk. I exist "here", but not exactly. I live in a place only mothers of "handicapped" children live and walk & breathe. It's so very lonely "here" and "there", it's indescribable. At times I am thrown to one place, then another, or someone will force me into one zone & try & keep me there, but I fluctuate between these 2 places, between these 2 realities...sometimes in the same thought, the same breath, other times, I stay in one place for hours or days or even weeks.
In one place, my baby is still perfect, so blond & curious & happy & just learning to sit up. He is not yet 8 months old. In the other, he is confused, obtund, desolate. I see this look in his eye I cannot wrap my hands around, I cannot reassure, I cannot communicate with. He wants to be in that alternate reality, and yet I know he chose to be here in this reality, with us, because that is where we are. This is where we are. So, PJ, I take you in whatever realm or reality or place you are, and try to go there with you, and try to be what you expect me to be, I try to be the woman and mother God intended me to be, and wonder if I go there with him or stay here in this place, this "typical" place with "ordinary" people, and try to make him "typical" or "ordinary".....or just love him & welcome him whatever way he comes as being truly him, and extraordinary. In that other, extraordinary realm, plane, place, sphere.
This journey I take with Parker. I take it often alone with him. He who does not tell me he understands with his words or actions, but I sense that he is wiser than I. His spirit shines while mine is lackluster. Though he has greatly suffered & I believe he continues to suffer, he still shines. He shines!
And Axelle comes out of surgery & she hears!
He shines & she hears.
I join the rest of the lot at home and thank God, again.
My dear, dear God.
