I'm also working on a book, my lullaby CD, and I am regularly running a 6 mile loop. Enjoying the run, actually.
My house is clean and renovated.
I am working on fun DIY's with the kids.
I'm tan and warm throughout the year, and I never crave simple carbohydrates when it gets cold.
I have been waking up lately with this song playing in my head called '10,00 Reasons." It says,
"For all Your Goodness I will keep on singing
10,000 reasons for my heart to find."
My life is far from the anal retentive version of perfect that I would have written, had I been the author. It is also far more beautiful as well.
A week ago Tim and I drove the family to the Detroit Children's Medical Hospital. We parked in front of a building across the street from the main hospital. The building was for specialty medicine. As if regular visits to the DCMH wasn't hard enough, now I have a free pass to the 'specialty' unit. Had I not walked through this process, I would never have realized that sometimes a walk from the car to a building can hurt one's soul.
What I wanted the geneticist to say was that Whitney looked fine, her delays were just a result of her MRI's findings. It was all some freak environmental cause in the womb that bid her lack of oxygen. Keep up the therapy. The sky is the limit. She will catch up, she will be fine.
That is not what I heard.
First let me just say that no parent ever wants to take their child to a geneticist. It has been the scariest stop along this journey for me. However, in my own personal episode of Mystery Diagnosis, where Whitty is the piggy-tailed star, I couldn't get over how completely sovereign this meeting with Dr. M was. The doors have swung wide open for me to take Whit to one of the nation's top facilities with some of the nation's best pediatric specialists. It doesn't go unnoticed that a thirty minute drive sans traffic for me is equivalent to what some parents pay thousands of dollars for: meeting with these doctors. For that, I am grateful.
So what we thought was going to be an hour appointment turned out to be over 3 hours in length. Whitney was examined, a thorough history was pursued, and the findings, although crushing to my heart, left me strangely without the slightest hint of shock. As far as her gait, delayed speech, muscle tone and some of her features, the doctor felt that her symptoms are more global and severe than what the MRI would lead you to believe. Therefore, he felt we need to systematically begin searching out the root causes. We will examine her on a metabolic level, to determine if her body can properly convert energy, break down proteins, and/or contain the correct enzymes. We will look at her from a neurological vantage point to determine if her 'signals' are having trouble finding their destinations, and we will also look at her brain. The doctor is pursuing some avenues for us that will allow our insurance to cover the now infamous and incredibly expensive Microray: the test that will search for any deletions, multiplications, or scribbles on her chromosomes.
I told Dr. M at one point that I was really afraid of the Microray.
Why?
"Because if something shows up, I am afraid of the limits that it will permanently place on her."
He spoke. Although he stated that that the sky is always the limit, Dr. M did reiterate that past performance is usually a reliable indicator of one's future trajectory. That was hard to swallow, not shocking, but really hard.
So they attached a little bag to her pee-pee, and drew blood from her arm. True to Whitney, she cried harder when they tried to measure her head. At one point, as I was alone in a room waiting and waiting for the labs to be drawn, I shed about 4 alligator tears. I wouldn't allow Tim to look me in the eyes, afraid that I might start crying and never recover. I looked into my lap and realized that their was a box of tissues mysteriously made available to me. I was grateful for the tissues and how they represented tender provision. I was hurting indeed, but strangely comforted.
Exhausted in every sense of the word, we took the angel babies out to ice cream. Poor Cole, Lily and Owen had to wait in the lobby reading, texting us and hungrily watching movies. We felt really sympathetic concerning them...parent fail for not preparing them for a Louis and Clark sized wait.
One of the hardest parts of this path with Whitney is the innate reflex that I have inside me as Whitney's mother to make excuses for her, or to overly explain her delays to others as if to protect her from their judgments and dismissals. If I ask her a question, and she doesn't respond 'correctly', I find myself having imaginary conversations about what I would say to my family members/friends or strangers concerning her. This breaks my heart. Even if these explanations would be stated in the name of shielding her, I know that I cannot do that to her. Part of accepting this specific part of her journey is accepting her. Not just accepting, but celebrating her. Every adorable square inch of her. She is mine. If others judge, let them, if they dismiss her, let them, if they cannot understand her, let them. She is not broken, not defective, not anything less than her perfect.
She is my perfect, and I am proud of her.
No scribble on her genetic fabric will change my mind.
She is my 10,000 reasons.
Sunday morning the kids, my Mom and I will drive down to Florida for a visit. Tim will meet up with me about 10 days later, and then we will drive back a few days after that. I am ready to see my Florida family and friends. Burst into happy tears ready. Perhaps even more miraculously though, I am at peace with returning back to Michigan. Almost home. Almost.
"God arms me with strength,
and he makes my way perfect."
~Psalm 18:32, NLT
Disclaimer: if you only know me through reading my blogs, please know that I have 3 other AMAZING children that consume equal parts of my time, heart and soul. At this point in my life though my writing is mostly devoted to processing this season of Whitty Woo's life. Hopefully I can share the more of the whole later.
Love,
J
