This is Global Tracheostomy Tube Awareness Week. Here's something I wrote for them:
Here's a poem I wrote when Sam was 2 years old.
Born: Like Caesar
Torn in unnatural manner
From natural mother
Into cold, unnatural sterility.
Purple with rage,
You tore needles from your flesh
Until they pinned you down.
In that world of hoses down throats and bright lights
And rock music
Were a giant.
"He will never see,
Never walk, never talk,
He fails to thrive.
Profoundly retarded, profoundly disabled
And seeing me at the far end of the hall,
As you slowly inch your way down your own
Reach your goal.
I lift you up.
With four gold medals glowing in our four eyes
We two alone, are buffeted
By crowds of angels
"He will never..."
That lies like truth.
Never: 'Till Burnham Wood do come to Dunsinane
In two short years,
I have seen you do what no Doctor
Born of woman
Believed you could do.
So lead on MacDuff and Damned be he who first cries
By Jeanne Forsberg with help from Shakespeare.
When Sam was born, I was confidently expecting a healthy, normal baby girl. Sam wasn't any of those! What was God thinking?
That first year my husband lost his job, we lost our apartment, we had to think of our 4 year old son, who was scared and confused, and Sam clung to life by a thread. We took him to countless doctors and had to re-admit him to the hospital several times. As he struggled to live, my faith in God began to erode beneath my feet. I grieved the death of my dreams and the death of my imaginary daughter.
I lost contact with so many friends and family members who could not understand what I was going through and had their own faith issues to deal with when God continued to not "heal" Sam. I couldn't walk away. I had no choice. I was Sam's mom. I had a job to do. It wasn't a job I wanted, but it turned into a calling.
Fast forward 31 sleep-deprived, anxiety ridden years. Sam is the delight of my life. Anyone who takes the trouble to know him is transformed by joy. Loving Sam has given me back more than I could ever imagine. His smiles and his hugs give me strength and heal my sorrows and fears. When I think about that mythical baby girl I wonder, what was I thinking? I would rather be Sam's mom than anything I can possibly imagine. This roller coaster ride has been thrilling.
Sam has Joubert's Syndrome. We didn't have a diagnosis until a couple of years ago. I think 31 years ago this diagnosis didn't exist. It is diagnosed by a particular malformation in his brain called a "Molar Tooth". I remember doctors telling me that he had an abnormality in his brain that looked like a butterfly, but they didn't know what to make of it. So we stopped worrying about a diagnosis and just focused on giving him whatever he needed. The neurologist quoted in my poem was pretty accurate. He doesn't walk or talk or chew. He is profoundly retarded and he is very short. But he certainly thrives! He attended Public School and made lots of friends. At his High School Graduation, the entire student body cheered. It was one of the proudest moments of my life. He has been an active participant in our church and through him, I have found my way back to a newer, deeper faith in God. People often stop us on the street or in restaurants and ask, "Isn't this Sam? I met him at ... He is so wonderful!"
Sam has only had a tracheostomy a few months. We finally agreed to it because he was hospitalized twice for pneumonia in 2012. It had been over 7 years since his last admission. Having a trach makes it easier for him to breathe and cough up mucus from his lungs. It makes it easier for me to suction out anything he can't quite cough up. It also gives us a way to attach a ventilator at night to control his sleep apnea.
It is a mixed blessing. He can't make noises anymore and I miss that. It gets clogged fairly frequently which is very scary and could be life-threatening. I have to take a mountain of medical supplies with me whenever we leave the house and I can no longer hire the kid down the street to watch him so I can get some respite and I have to always be with him - which isn't all bad!
And he loves his trach. He touches it frequently and smiles. He loves breathing through his neck. Thanks to the trach, we get to keep our wonderful, miracle boy longer and that's the best part.