Support

Day 28:  Support

When you're weary, feeling small,
When tears are in your eyes, I will dry them all;
I'm on your side. When times get rough
And friends just can't be found,
Like a bridge over troubled water
I will lay me down.
Like a bridge over troubled water
I will lay me down.

When you're down and out,
When you're on the street,
When evening falls so hard
I will comfort you.
I'll take your part.
When darkness comes
And pain is all around,
Like a bridge over troubled water
I will lay me down.
Like a bridge over troubled water
I will lay me down.

If I know nothing else, I know that I am a Simon and Garfunkel fan and that probably makes me lame on some level, and I know that we would never be where we are today without the love and support of friends and family.  All of life’s trials and tribulations are easier when shared.  I think about those families, with new diagnoses of Leukemia or Autism or Diabetes or any other life-changing condition, and I pray that they have family and friends nearby to help them get through it.  Because it’s a long, emotional, stressful road.  And it’s critical to have someone to lean on, to count on, to cry to, and to rejoice with. 

When Coleman was first diagnosed with Leukemia, we were stunned.  That first day at Children’s, we finally were moved from the E. R. to a room around 10 p.m.  Billy left to go back to our house to get some clothes for Coleman and I, and I sat in the room, staring at my sleeping little boy trying to comprehend the enormity of what we had been told.  I felt outside of myself – like I was watching from a distance this whole story unfold.  I wasn’t crying – I don’t think – because I was trying to just sort out the whole concept in my head, trying to calm myself over something I had absolutely no knowledge about.  There was a lot on my mind – more questions than answers, more confusion than clarity… but more hope than doubt.   A short time later Billy’s brothers and his sister Alison’s husband Charlie walked into the room.  They didn’t know what to say, and either did I, but they came and hugged and stood by us until Billy came back.  I’ll never forget that – it was very late, well beyond standard visiting hours, but they came anyway.  And that gesture said everything.  “We can’t change this but we are here for you.”  I love them for that. 

As the weeks and then months wore on, our families were our rock, our solid footing when we could barely stand.  I remember my sisters and my sister-in-law swooping in, taking complete control of our girls.  Cousin sleep-overs, days at the park, keeping the normalcy in their lives amid the abrupt absence of Billy and I.  And our nannie Sue was as big a help as was humanly possible.  It was such a relief – to have the burden of worrying about Abby and Emma lifted for us.  Because they were scared too.  “Can we catch it?” Emma asked when I made my first trip back home a week later.  “Will he die from it?” “Will he get better?”  They were so young – not quite 3 and 5 years old – and so sad and confused by it all.  I remember telling them how rare Leukemia was …and when they came to visit Coleman at Children’s later that month, Abby whispered to me “I thought you said this was rare?  Does every little child here have cancer?”  It was true, the floor was full, most two to a room.  “It’s because this is the best place to be treated in the whole world so they all come here” I told her, not entirely the truth, but not entirely untrue either.   

Our friends were amazing too.  From food baskets (Tracey whom you already know to be amazing literally bought a large cooler to leave out behind our house because she was constantly bringing us meals), to parking passes, to just coming into Children’s to sit with us, to being the shoulder to cry on to everything in between.  You don’t always realize how amazing your friends are until you really need them.   And we really needed them. 

When Coleman was later diagnosed with Autism, in many ways it felt like the same kind of tragedy all over.  We didn’t fear for his life, yet we feared for his life.  And again, we were trying to sort out the whole concept in our heads, trying to calm ourselves over something we had absolutely no knowledge about.  For the second time in Coleman’s short life we had more questions than answers, more confusion than clarity… and more hope than doubt.   And the girls, just a little bit older now, had the same questions when we told them:  “Can we catch it?” “Will he die from it?” “Will he get better?”  It was crushing for us all.  But unlike cancer, the news about Coleman’s autism diagnosis didn’t spread like wildfire.  Many in our family already suspected it, and when we confirmed it, they sighed sadly.  “I’m so sorry” they said.  In my kitchen, I told my mother everything they had told us.  I wiped the counter trying to pretend it was all ok, until wiping the same spot over and over, I was crying and she was crying and we had ourselves a nice cry fest.  My mother uniquely understands how I feel because of her experiences with my sister, and never a day goes by that I am not grateful for her support.  Billy had a hard time with the diagnosis, feeling very much like Coleman was cheated out of his life.  So unfair, he kept saying.  He doesn’t deserve this.  Of course he was right – Coleman didn’t deserve it – but we had to move on.  And Billy’s family was wonderful too, and their love and support pulled Billy along.  Many of friends didn’t know for quite a while.  It’s not that we hid it, but you don’t just call everyone on the phone and say “Hey guess what?!”  The news came out in pieces, as we saw our friends, as they came to the house, in dribs and drabs until pretty much everyone knew. 

The love and support of our family and friends continued.  With Autism, however,  you don’t exactly send food baskets.  The support turns almost entirely to emotional support, which is quite a bit harder, in part because it’s not a topic everyone is comfortable talking about.  It’s not that people don’t care, but more that people aren’t always sure what to say, or feel that they don’t know enough about Autism and don’t want to say something dumb.  “Is it okay to ask this?” they wonder.  When the girls were in elementary school, I used to occasionally go into the school and talk to the class about Autism.  Emma really drove this, she has such a fondness for Coleman.  She would talk about him endlessly at school to both classmates and the teachers- she wanted everyone to know and love him like she did – until finally she would beg me to go in and ‘talk about Coleman”.  I would go in and talk to them generally about Autism, tell them how Coleman was a little kid like they were, that his mind just worked a little differently, but that he laughed and cried just like they did.  And then I would let them ask questions because, and this is where kids are different from adults, kids aren’t afraid to ask questions.  They’re not afraid of insulting you, or saying something they shouldn’t have.  They ask because they are curious.  Adults don’t ask.    I remember talking to a friend with a non-verbal child.  I was just getting to know her, and I had seen her in church with her daughter.  When we were sitting together one day and I asked her about her daughter.  “Does she speak?  Do you think she understands you?”  I didn’t fire them off at her like that, but through conversation I asked.  She teared up at one point, and I thought, “I’M SUCH A MORON! I have totally upset her” and I apologized for overstepping.  “No!” she said.  “It’s just that most people don’t ask about her.  It’s like the white elephant in the room.”  To this day, I really love and respect this woman – she is strong and brave and I ask questions because I want to understand more about her daughter so I can be a better friend to her.  From my point of view, I feel better when someone asks.  You are asking because you care, so you can be a better friend, so that you can be better informed, or so that you can tell your husband/wife/brother/sister/cousin/child about this particular question and inform/help them.

Our friends and families slowly digested our news, and slowly began asking questions.  There were things we didn’t know – and a whole bunch that we still don’t.  But we talked things through, weighed different scenarios, and made decisions.  Some were the right decisions, and some weren’t.  And Coleman grew and changed and challenged us in many ways, and we held our ground, trudging rather than galloping, through the unknown territory.  Through countless conversations, complaints, grumbles, and celebrations, we have all learned alongside Coleman about Autism in general and him in particular.  And we are all still growing, still learning - Coleman, Billy, Me, the girls, our families and friends.  We hold onto hope and faith that this journey will lead to a wonderful future.  And as we get there, the unending love and steady encouragement we get from everyone will keep our boat afloat, and I think, make us all the better for having walked the path together.