Hot Moms Club: Redefining Motherhood
Ellen Bradley Ganus
I hold Tyler in my arms every night and watch him sleep. He is 3 years old now, and getting big for our bed! But, somehow, amongst the sleepless nights, there is a profound comfort in holding him close, listening to him breathe and seeing a beautiful and peaceful look on his face. Quite often, he laughs in his sleep. His outbursts of "No! No! Don't hurt me!" seem like a million years ago and at the same time, just like yesterday. I look around my room and feel the comfort of our down comforter...and I am instantly grateful. It is the small and insignificant moments that seem to jolt me into a space of gratefulness, away from the confusion, sadness and fear. However, the journey continues...so far, so good.
Tyler was born on 6-18 at 8:16 in room 618...what a coincidence! Some sort of blessing. eh? He was perfect in every way...smart, handsome, charming. He was a bit of a handful, especially coming after my oh-so-mellow daughter Spencer, who is now 6 years old. Tyler liked to have things his way, and it taught me greater lessons in patience, than ever before. At Tyler's 2nd year check up, I decided to give him a Tetnus shot, in combination with Diptheria...he was very active, it was recommended to us, and frankly, I was tired of the fight not to vaccinate. It was two weeks later, when we noticed that he started to bruise... a lot...dark purple and bright pink bruises. I thought that it was a weird vitamin deficiency or something and didn't take him to the doctor until a week later. My daughter had a minor burn on her arm and we all went to the office together. While we were there, I had Dr. Harvey examine Tyler. He sent us to draw blood right away. Each day that followed was filled with more and more frightening news...I always considered myself to be very strong, but this was the beginning of a new life that was about to derail me. On Paul's birthday July 28th, 2004... we checked into Children's Hospital Los Angeles and didn't know if we would ever make it out... Tyler was diagnosed with Aplastic Anemia. The only thing that the doctors were certain of was that it was a post viral condition (related to his exposure to Epstein-Bar and Fifths Disease) and it was very rare. His bone marrow was empty and no cells were being produced. I was sure that they examined the wrong blood! This was impossible! How could he still have so much energy and seem perfect in every way? How could he have the strength to "box" with his Elmo balloons? I certainly didn't! In fact, I think I scared most of the hospital staff with my outbursts. I would run aimlessly through the corridors, trying to escape my situation...just to end up crumpled on the floor in the arms of a social worker. They were not used to an emotional actress!....Most parents there were more repressed and didn't react like me. My first night was the worst. I was in a dark room (the parents sleeping quarters) with no windows, 2 social workers, 2 special friends and I was literally climbing the walls. It was like being on an hallucinagenic drug. I wanted to jump out of my skin. I wanted to wake up from this nightmare and have it all go away. I was certain of only one thing: if Tyler didn't make it, neither would I. I would sneak out to the playroom in the middle of the night, and the custodian would unlock the door and she would clean the room. I sat in a chair that was too small for me and listened to the Spanish prayers of my new friend. It somehow was comforting, at least for a moment. It was surreal. I would look at all the toys, and the artwork....it was a happy room....it became Tyler's favorite place. It became his preschool. We would be squeezing between each other's IV poles, and the moms would be high fiving each other when bone marrow matches were found. At least Tyler had hair. It grew a lot due to his medication. Under the amazing leadership of Dr. Thomas Coates (an angel and a hematologist!) we embarked on a healing journey and prayed for a miracle. We were supported by an incredible hospital staff, Paula Berlin, social worker extraordinaire and nurse Sue Rhoades gave us unparalleled kindness...a new belief in people but an even greater belief the possibility of a future, too.
It is amazing to quickly create such intimate bonds with people that you hardly know! Tyler became very popular. He was known as Bandaid Boy. He would cover his bruises with bandaids and end up with special artwork all over his body. The more bandaids he had the less places they could stick the needles! I had to remove them daily, so he wouldn't infect himself, so people would line up to see the new artwork each day. Visitors couldn't bring flowers, due to germs, so we just asked for bandaids. What a collection we had!
Spencer wasn't a bone marrow match so we opted for a chemo type treatment to help turn his body back on When the doctors rolled in the Oxygen tanks and other respiratory machines it was scary but it wasn't until the sweet young resident Dr. Nathan took my hands and asked me if he could pray that I became more afraid doctors never did that! Even he was scared. We were so lucky We had so much love sent our way. Tyler was being prayed for all over the world and my sisters the greatest circle of friends that you could ask for were taking care of Spencer as she got ready for her first day of kindergarten She had never even slept out before! She moved from house to house having sleepovers with her favorite preschool friends (for over 1 month) and this group along with our other friends and family became our life-line
Our families and friends continued to share their blood and tears. We lived at the hospital with Tyler for 3 straight months not knowing if he would survive. He made it through the treatment without any side effects. He became transfusion independent in October. He survived on the blood and platelets of our friends. There was no supply at the hospital and at times we even had extra to share with our new friends on the 4th floor. Tyler is now in his first year of preschool. He loves life. He laughs a lot. He is thriving I am told that he is incredibly smart and emotionally mature I hesitate to share what we have been through...I want life to be simple again the way it used to be when I thought it was so complicated and busy! I hold on to my daughter's words... "Tonight mommy, I have a different prayer it is not for Tyler, it is for you pray to God to let you know that Tyler is gonna be okay."
I didn't realize how difficult it would be to write this article procrastinated, cried and gave up many times!
It is not easy to be vulnerable these days. This journey is different from any other pain I've known. It is not death it is not physical pain (although it can manifest as that) it is a strange sort of gripping fear. What happened to my faith? Is faith knowing that I can handle whatever life deals me, or is faith knowing that God will heal my son? I don't know anything anymore Many people keep telling me how strong I am, but I don't feel strong at all Perhaps true strength is the ability to let all your emotions show When the night would roll in it was the most difficult I would wonder if we would all face the next day together and so far, we have I read this poem every night in the hospital and it really helped me a lot
Dawn Will Rise, by Wendy Hauptman
When dusk has come to take away the brightness of the day,
And the sun that lights the path of life has all but slipped away,
Remember that in darkest skies you will always find a star,
and when branches rub together sparks of light are never far.
For by the Grace of God, tomorrow is never gone,
a brilliant light will lift the gloom arising -- that's called Dawn
For by the Grace of God, tomorrow is not that far away.
It's just another night before the dawn will light the day.
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