The Dark Days

Recently I recieved an email from a friend of a friend. Someone she knew had just recieved the crushing diagnosis we did back in March. I've since reached out, and listening to her talk, brings back so many memories. It walks me through the diagnosis like it was yesterday. No matter who you are, or what you do, the news of SMA reacts the same in all of us. Everyone has their story. How we cope is carnal instinct. Some fight, some flee. Others are stuck in between living pergatory over and over again. Wishing its just a bad dream. Some go through the all of motions and cover all the basis.

For those of you who don't know, I'm going to take you back, to what I refer to as "The Dark Days"

February 17th- I recieved a phonecall in the middle of the night letting me know that my grandmother, who at one point was more of a sister to me, passed away. The woman was a bare all no nonsense kind of woman. Every morning I'd call her and she'd either tell me to stop being a dramaqueen, or leave my husband. haha. She was wise, and I looked up to her. Doris Jean [She is rolling over in her grave because I used her first name] died of lung cancer. She was so strong, and so stubborn, she waited til the point of no return before letting the family know. To my dismay, her death took me by complete suprise. To this day I still dream of her and to no avail, in every dream we are talking on the phone. Your probably what if any way does this tie into Audry's diagnosis. I briefly brushed on SMA with my grandmother before she died and that they were simply "ruling it out". No one believe Audry wasn't going to get stronger, just that she'd need a little more help, than most kids. After my Doris died, Audry started sitting up straighter, becoming more verble, and overall stronger. I attributed it to my grandma putting in a good word with the big man upstairs when she got there. I don't believe in ghost, but I do believe in angels. My honory ass grandma made it a point to turn off tv's, move my mattress off the bed, as well as knock over some tupperware, the week after she passed. God, I miss that woman.

February 24th- I woke up that morning like any other morning. Tired. Being a recent single parent I was in over my head and had to be at work in 45 minutes. Rushing had become my "normal". I arrived to work 10 minutes late. Snuck in through the back and because of recent events with the AWOL ex husband, and Audry being referred to the Developmental Pediatrics for "developmental delays" they naturally assumed I was on appointment. I came in un noticed. I recieved a phone call from her pediatrician saying the first set up labs had come back. She had previously told me that no labs would be given over the phone. Surely to prep me for what I was walking into. I set up an appointment for 1300 and when the time I came, I went up to the clinic. Convinced that my baby did not have this disorder I so stupidly did my research on. I was smiles, and happy go lucky. Immediately I noticed that I was the only one in my euphoria. 4 doctors/specialists were in the room with me. There was 2 pieces of paper face down on the table. Dr. G's hands were folded over the paper, saddness in her eyes. All eyes were on me. She started by saying "The labs came back...." she was quiet. "Audry tested positive for Spinal Muscular Atrophy". Before even processing what she had said I blurted out "WHAT TYPE?" Now it was the Neurologists turn to talk. He explained that Audry was a bit of a question mark. She presented early, and seeing as how she was so weak they wanted to put her as type 1. However 13 months was a late dx for a type 1. So they agreed on a weak type 2, strong type 1. After 30 seconds of casually conversating with them, as if they hadn't just given Audry a death sentence. I through up. All bets were off at that point. I continued to sob uncontrollably, wrenching, and dry heaving, unable to see or hear anything. Everything I had read, my worst fears, were confirmed in that office. The poor social worker, God bless her, trying to give me the slightest bit of hope, was taken a back by my "FUCK YOU, THIS IS BULLSHIT!" I was hostile, I was futile, I was devestated, I was heartbroken, most of all I was grieving. The 30 minute appointment turned into 4 hours. I finally go to the "all cried out phase". Told them I was leaving. I needed to be with my kids. They talked with my unit and scored me a 4 day pass, as well as a she's too distraught to finish her 12hr shift.

On my way home I cursed God in the car. I was pissed. How could he do this to me? I was a good christian most days. I went to church, I prayed with my kids, and teach them about him. He took my grandmother the week prior, and now he was trying to take my kid. My kid that I love more than world itself. Little Audry who had a sister, and people who loved her and care for her. She was so young. It wasn't fair. Pretty sure God drove me home that day cause I was a blubbering mess. Mix in the rain and slick roads it's a miracle I didn't hit someone. While cursing him for giving me this gift of motherhood to turn around and give me more suffering. To make me a single parent, and now this. Furious and going off in my pretty little head about how screwed up his plan was. A song came on the radio. Every once in awhile I listen to christian music. I don't particularly remember putting it on that station that morning. Non the less, It was on it, and the song that played stopped my thoughts in its tracks...

Blessings- By Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

...as the song progressed the tears stopped and a calm came over me. I was able to regain conciouness and the weight that I was carrying from that day came off my shoulders. I even somehow managed to pick up the kids from school and explain to the teachers about Audrys diagnosis. They cried, and I held it together. I grabbed the girls and went home. When I arrived home and I got the girls in the house. I looked at my babies. I held Audry tight. I wouldn't let them see mommy hurting, because well what good would that do. I finished out the evening chain smoking, and watching movies with the kids. That night I put Emery to bed. Audry being too young to understand emotions, I took it upon myself to silently unleash the emotions I pent up that evening. She didn't mind the extra hugs and kisses. To this day she has no idea what came over me. The emotions of being told "There is no cure, There is no treatment, and chances are she won't make it to her second birthday" are enough to break even the strongest of people. I spent the next 4 days on a rollercoaster going up, and down, running out of the room to cry, washing my face to hide the tears. I learned early on I did better with other people around. That weekend I filled the house with friends and family. When it was quiet was when I was in the most pain. By the time I returned back to work, I had dug out my big girl panties. [I had since put them away after the ex husband went AWOL] While there wasn't a cure nobody was taking my sweet Audry until I said so. They could shove their expiration date where the son doesn't shine. I hardly slept at all the first month. Between connecting with other parents, researching all the things I was told would help, as well as spending every waking moment with those babies, I was exhausted. I learned a new language, and we had a new life, I rely on God more so now than in my entire life. For those of you who are tracking my childhood, you understand. Our life isn't unicorns and rainbows, but its our life. I didn't ask for it, but the pain I feel is temporary, and God does indeed have a plan for myself. Audry is an angel who touches every person she comes in contact with. I'm lucky to have the title of being her mother. I was hand-picked by God to do take care of his special package. They say "God doesn't give you more than handle." While, I seriously question his confidence in my character, I'm doing make do, most days. I'm happy to report that Audry is nearing her second birthday and we are all impressed with her progress. I'm no longer drowing in "The Dark Days", and I find comfort in knowing, that when it is her time, while it's not happening any time in the near future, Grandma Jean will be there waiting, and she will have someone to "show her the ropes"

"Embrace The Suck"