I walk into this embrace that I have known intimately for twenty-four years. These arms that steady me and hold me up when all I want to do is sink to the floor and give in to my grief and questioning heart.
"Why does this have to be so damn hard?" I ask as tears stain his shoulder.
"Letting go is the hardest thing He will ever ask of us Mar. We place her in HIS hands and trust that He knows what the rest of her story is. We can't write it. It's HIS alone to write." he assures me and pulls me closer.
This sacred space is my safety net. He and I, in cooperation with the Good Lord above made beautiful babies. God decided we would only get to love two of them here on earth and love them we do with everything we have.
This loving thing is hard some days.
Today was one of those days.
Courtney had a Neurology Team appointment this morning bright and early in the city. I wrapped her up in her warmest coat before the sun rose and off we went with big brother in tow to help load and unload.
Hot steaming coffee in hand I look over and tell my first born to get the rosary down from the rearview mirror and we begin our journey.
"It's a rosary kind of morning son. Let's say it together so God guides this day."
He looks at me and asks "Why? What's going on Mom."
Oh he knows me so well...
"I don't know I just feel like we may need the extra support this morning." I assure him there is nothing I am keeping from him but that I cannot shake the feeling that today is a different kind of day.
"I hate those kinds of days." he grumbles.
I am NOT a huge fan of them either, I must admit. These different days usually arrive when I least expect them and turn my life on it's head.
They are chaos creating days and I am NOT a big fan of chaos.
We arrive and wait in the cheery space made for little people. I remind myself that we have trusted God in this dance for twenty years and He has always been there. He has always guided my footsteps and desicion making in regard to Courtney.
He would be there today.
We meet the Doc who hugs me wishing me joy and blessings in the New Year. Courtney is sound asleep in her wheelchair and this makes him frown.
I don't like his frown. I pray it turns upside down...
My prayer goes unheeded...the questions begin. I receive a peppering for the next 45 minutes from him, his residents, his medical students. They ask. I answer.
They dig deeper, I try to remember everything.
I look at my notes. They look up lab results in the computer.
The room begins to feel stuffy and crowded.
Then he begins to speak and what he says stuns me.
This is just a regular check up I think.
I think wrong. I am unprepared for what he thinks has changed in my girl.
I am unprepared to hear things like "her liver is compromised"
"Her lower spine is beginning to compress her lower organs".
"We have to get her off this seizure med as soon as possible before we get into more trouble."
crap, crap, crap.
"You mean the one she's been on since she was five weeks old? That med?" I ask weakly sounding like a frightened little girl watching her future go up in flames.
She's in trouble? Look at her!! She's beautiful. Her lips and cheeks are pink. She's sleeping peacefully. She's freaking snoring for gracious sake. Trouble?
How much trouble?
He goes on to lay out a NEW care plan, one involving changes in medications, changes in diet, changes in her physical therapy to support her spine, changes in her feeding plan. There is mention of a new specialist.
Another Doc? My mind begins to scream "NO! NO! NO!" and not a single individual in that room is listening.
There are changes, changes, and more freaking changes. It goes on and on and on.
I take notes furiously as my eyes begin to tear up.
Don't lose it now sister. You are all this girl has so keep yourself together. You can cry later. Right now listen so you don't screw anything up.
My heart begins to race as he rattles off instructions. I ask for clarifications. He rattles off more information.
There is a war going on inside my daughter and she is fighting with everything she has.
There is a war going on inside my mother's heart and I am fighting with everything I have.
The man continues spouting like a freaking encycolpedia and it's beginning to piss me off.
I am a menopausal woman who has not had a decent nights sleep in twenty years and all I want to do is grab my girl and run far, far away.
OH...how everything in me wants this all to go away. I want to be talking about broken hearts and boyfriends, bad school grades and the latest fashion line from Ralph Lauren.
I do not want to be talking about "high ammonia levels" and "eventual liver or kidney failure".
Geez put me on a beach some where with a lovely drink that has a frilly umbrella in it. ANYwhere but here.
Alas, there will be no running away.
For any of us.
There will be hard days ahead. Many, many hard days.
With the hard days come the smiles. They are like rainbows in the living room. A secret handshake just between Courtney and me letting me know she's OK and God's got this thing.
HE alone will let me know when to let go of her hand so she can fly straight to HIS loving arms.
HE alone will mend the broken pieces of my heart. HE is the only one who knows the WHOLE story, mine and Courtney's. HE knows what needs to happen for each of us.
HE knows how all the puzzle pieces fit together to create the most powerful story ever told. One that honors HIM and glorifies HIS SON.
Me...I just know that I love my children with my all heart and soul. I want them to be happy and WHOLE.
I know for Courtney that WHOLENESS exists only in one place and that is HEAVEN in the arms of her BELOVED.
I want that to be different, I really do. But I don't get to pick the ending. I just get to walk the Via DeLaRosa with my daughter however long that journey lasts. However many mountains we have to climb to get to the Promised Land, we will climb together.
So...I nestle into the arms of the man who walks this journey with me, feeling his strength of faith and love seep deep into me. We will do this together, he and I. We will love our daughter with every ounce of love we have within us. Her brother completes our circle with his laughter and love.
We are the family God chose for this girl and we will walk her straight to those pearly gates no matter what. We will not give up. We will not lose hope. We will not lose faith.
The plan may not be mine but I will trust that it is what must be.
I will also be buying stock in Kleenex and Ghiradelli Chocolates. I am not stupid you know.
So if you will indulge me and say a little pray for me and my Courtney this night. That we both handle the changes that are coming with grace and the wisdom to make the best choices we can.
Blessings and Gratitude...