It occurred to me the other day that most of the blogs and stories I have heard or written are about what it is like to be the mother of a child with special needs or special healthcare needs. It also occurred to me that no one ever asks my husband, Paul, what the experience of Lily's illness and subsequent rehab have been for him. I can't answer for him and perhaps I can get him to do a guest blog about it but I want to take a moment to tell you what my new definition of a real man looks like.
My husband is a black belt in a form of Japanese martial arts called Aikido which means that he is strong and disciplined and if need be he could break an arm. Most people don't experience my husband that way. One of my brothers who is a bit of a jock and an ex boxer tried to get Paul in a choke hold one time and learned the hard way about Paul's understated strength and ability. Most people see him as a tall, thin academic (geek) who loves playing the banjo and fiddle, loves all things having to do with Asian medicine, philosophy, and spirituality. Few people know the man that I will love until the end of time-the quiet warrior that spent hours in the early morning rocking our seizing baby through tough nights.
Ours is one of the 7% of marriages that survive having a child with a catastrophic illness or multiple disabilities. The stress of daily living of having a child with special needs is so great that most couples don't make it and few are ever as close as they were before the child arrived. I attribute the success of our marriage to having an incredible partner who never told me not to cry, never walked away, and who had the grace to just comfort. And the unbridled, often inappropriate laughter! He once accused me of farting in front of a team of neurosurgeons when I had fallen dead asleep in my chair in the pre op room. We laughed through tears as we waited to see if Lily would come back to us alive.
When people ask me about our marriage my first image is of Paul dancing around baby music class with baby Lily who was so swollen from the steroids that doctors had prescribed to try and stop the seizures that she looked just like the Michelin Man. I dreaded those classes because, even though they were taught by a dear friend and Lily really seemed to find joy in the music and the movement, it was a reminder of how sick she was. I could see the other parents sizing Lily up-not in a mean way but taking note that she was not sitting up and she just was constantly jerking around with each seizure. Some mothers had visible tears in there eyes when theirs would meet mine. But not my man. He danced around that room like the proudest daddy that ever had a baby girl. Just writing this I am overcome with love and gratitude that Lily had such a great man from the start.
Every morning for 2 months Paul injected a pellet of steroid gel (ACTH) into Lily's thigh and even though he hated every second of having to do that he didn't waiver and he didn't complain. He stayed so strong for me. The only time I ever saw him crash was the day we were getting our pay stubs together for our taxes and he said "I only made two thousand dollars this year?! What was I doing?". He paused and I saw the previous year flash before his eyes-the two brain surgeries, the drugs, the fear, the tears, the heartbreak-he fell to the floor and sobbed for a few minutes and just said "it was so sad" and then he got up and went back to being strong and awesome.
Finally, he takes turns taking Lily to the seemingly endless doctors appointments. I can't imagine how single mothers do it-I suppose because you have to- but there come points where I cannot go to one more doctors appointment in a week and he steps up and takes care of business.
In some ways our marriage is stronger today because of our shared journey. I'm sure many of my friends have their own stories about their men and I would love to hear them!
Thank you, Paul, for being the love of my life and the best dad I could imagine for my girls.
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