Letter to Me (And You)

Every time I sit down to write something for the blog, I stare at the blank screen and ask myself why I am doing this silly exercise in the first place. I think of all the reasons not to write something down. I doubt that anyone wants to hear the mundane details of our little family’s day to day existence, doubt that I have anything new to say on the beaten-dead-as-a-horse topic of Down syndrome. I remember that by the time I get something written, I won’t have time to proofread it properly and will basically have to post it in rough draft form, which for a perfectionist is kind of like being forced to line dry your undees out on the street for all to see without getting a chance to wash them first. What I want is to be able to wait for inspiration, carefully construct some clever lines, and then have time to sit with the words and edit them carefully (read: pore over with a fine tooth comb until I decide to file it in a box under my bed and never let it see the light of day again). What I’d really love is to be able to raise awareness, advocate gently but effectively, and generally change the world for the better without having to put myself out there.

Unfortunately, it doesn’t work like that.

The first year we did the 31 for 21 challenge, I concluded by noting that after one year of raising a special needs child, we were not just surviving but thriving. I said then, and this remains the reason I continue to put myself out there today, that: "I wish I could share all of these thoughts with the frightened woman who lay in St. David's hospital last October crying into her hands. I wish I could stand over her shoulder as she sat in the NICU in a wheelchair fumbling with the cords that bound her newborn son to chirping machines. I wish I could lay my hand on her forehead when she woke, feverish, in her own bed with the sick realization that, while her son was across town under the care of some night shift nurse, she had slept the night through."

I do this, with the help of some very loving and talented guest posters, because if these words help even one parent in that situation, it is worth all of the discomfort and self doubt of hanging my dirty laundry out there in plain sight every day for one month of the year.

Recently, I was asked to write a letter to a couple who had just received a prenatal diagnosis of Down syndrome for their daughter. Unlike the reaction I get when I sit down to write the blog, I wanted to get started right away. I felt like I had so much to say I could have written 50 pages. There I was getting to do what I had been trying to accomplish with the blog, offer the kind of comfort to someone else that I so desperately wanted myself at the heavily emotional time when I was absorbing Linc’s diagnosis and what it meant for our lives. And although I could have gone on and on, I tried to keep it short and highlight the one truth I wish I had known in the beginning, telling them “the fears you are facing now in the wake of your daughter’s diagnosis in no way resemble the amazing life you will have as her parents.”

Every year that passes I see that truth more clearly. The first two years I wrote this, I cried almost every day I as I wrote, as I dredged up old fears, exorcised the heavily entrenched demon of self-pity that was holing up in my chest, and tried to find reason and purpose in the chaos of random genetic anomaly. It was a painful process, and I left the month of October feeling wrung out and empty of words or feelings. This year, I have barely shed a tear, and the tears I have shed have been for other people, not over Lincoln and worries related to his 47th chromosome.

In fact, this year I have found the forum even more personally helpful and uplifting than before, while still being just as therapeutically cathartic as it has been in recent years. I feel like it has enabled me to look around at my family, at the stage we’re in right now, and just enjoy the richness of our quirky, quixotic life. The weight of love becomes so much you think you’ll drown beneath it, and I am just so saturated with it this month, I find it hard to breathe.

We came into this month with a host of fears for the coming changes, and now we’re leaving it with increased confidence, both in Linc’s ability to adjust to new circumstances and rise to the occasion, and in our ability to let go of him a little and give him more of a chance to assert his independence. Writing about Linc’s mannerisms and abilities this year has really helped me come to terms with Lincoln as a boy and give up my idea of him as a baby. I am seeing Nico more and more as a best friend and protector of his brother. I see his character being built by the daily interactions with Lincoln, and though some days he still descends into his own brand of madness, more often than not, he is treating his brother (and his friends) with remarkable compassion. I see Sam settling into his role as full time, all day father with an ease and comfort that I simply do not have in my evenings alone with the boys. Despite widespread stereotypes suggesting that mothers trump fathers in the lives of young children, Sam has managed to tap into that special something mothers are supposed to have and fathers are supposed to be devoid of, and now when the boys fall and scrape their knee, it is dad not mom who represents the ultimate cure-all.

Finally, I see all of us falling into place in society. We are not pariahs whose lives have fallen into some bottomless pit of special needs from which we will never be able to extract ourselves. When people see us in the store, they don’t pity us. They make their way past the bins of oranges and corn cobs to grab Lincoln’s hand, or listen to Nico chatter, and tell us what a beautiful family we have. This doesn’t mean I don’t still have hang-ups and a complicated web of fears built up about Lincoln’s future, just that our life is not defined by those fears and hang-ups. And honestly, I don’t think we would be here, in a life defined by bounty rather than a sense of need, if it weren’t for Lincoln’s diagnosis.

In the end, when I struggle with thinking of what to write every day for the 31 days of October, I try to write it as a letter to myself, a message to my past self in the days after Linc's birth.  When I frame it that way, the words start to come, and I can embrace putting myself out there, honestly, uncomfortably out there with the hope that I can spread comfort or hope or awareness to someone around me, or even someone who is a friend of a friend of a friend who needs to know that what seems like a roadblock from far away might just be a pothole when you get up close to it.  I believe in the commonality of the human experience, that we are all more like each other than we are willing to admit, that there is a shared language in the joy and the pain that we all feel, though the precise events that make up each heartbreak or celebration vary widely.  For that reason, I believe that Lincoln is a whole, complete person who deserves all the best things (and a healthy share of struggle) in his life.  He is human, like you and I, speaking the shared language of our common existence.  And, beyond that, I believe speaking out about and for Lincoln promotes an honesty about our brand of human experience that creates solidarity, a we're in this together kind of feeling that is so often lacking in modern relationships.

So, thank you everyone who has been in this together for the past 31 days.  I am, as in years past, humbled and energized by the responses we have received.  As I said earlier, the weight of love is heavy on us now, and everyone who has read along and encouraged our progress this month adds to the wonderful weight of it. I have a few pictures and stories from this week that I wanted to share today, but time has gotten away from me.  I may just aim for 32 days this year and add one final note tomorrow.  Love to you all, Happy Halloween, and thanks for being part of our human experience.