Dear Danny,
Two weeks ago your little brother came into the world on a beautiful afternoon, despite our best efforts to welcome him 2 days later. We’d had a solid plan – one that was full of your familiar routines, your favorite places and people. Your Dad and I had planned for 3 days off before the baby’s arrival to prepare for our growing family, and we were enjoying the 2nd of those days together. We ran errands, went to lunch, and picked up a few last minute items for you and your brother. We sat at our favorite coffee shop – a small quiet place completely incompatible with kids – and enjoyed the peace and stillness of being 2 on the cusp of becoming 4.
I think I will always remember that it was trash day – a day that our HOA expects us to bring in the empty cans before dark. As we drove away from the house that Tuesday afternoon – headed for the hospital – we saw that the trash had been collected and considered stopping to put the can back into our yard. We didn’t.
And if we had, even that 5 minutes could have changed everything.
*****
It was just over a year ago that our family was mourning a miscarriage; our 3rd loss and my 4th pregnancy. It was devastating, especially so because I had such high expectations for how having a sibling would affect you.
It wasn’t easy to make the decision to expand our family, especially once we were truly face to face with an Autism diagnosis. How would we cope if our next child were also on the spectrum? What if we had a child more profoundly affected? I can’t lie and tell you that it didn’t, and doesn’t, keep me up at night from time to time.
When we found ourselves pregnant last spring, I took it as a sign that we had made the right call – that having a second baby was part of God’s plan for our family – and we were immediately in love. Months later, when we saw that small, still baby with no heartbeat, we were broken on every level. I honestly wasn’t sure I could go through it again, so our dream of being a family of four was further away than ever.
*****
When we arrived at the hospital, the first thing we did was take a few pictures. It only seemed fitting to do some of the stereotypical things that people do when they are in labor. We didn’t run any red lights or get followed in by the police or anything, but we had some fun with the experience. I never went into proper labor with you, Danny, so it seemed completely absurd to me that this time – the time I had birth planned to the minute – would be the time that I found myself having the textbook experience. Even as the contractions became more intense and frequent, I found it hard to believe that it was really happening – I was sure the doctors were going to tell us to pack up, go home and wait for the “real thing”.
*****
As spring turned into summer, our grief faded into the background and the collection of months that followed were some of my favorite of your life. We went to the beach, spent hours at the pool, had a big party at your Grandma’s house – all of this while you excelled in your summer programs at school and church. We started to realize that we weren’t as afraid anymore – that you were thriving and growing, listening and learning. Your Dad and I refer to those months as our family “surfacing” – a time when we finally came up for air after years of allowing ourselves to be suffocated and trapped by Autism.
And, as we were nearing the surface, we realized that as terrified as we were of having another loss…we simply couldn’t shake the feeling that someone was missing.
*****
The very first time that I was pregnant in 2006 I prayed for a girl. Such a silly thing to ask of God, but I couldn’t help it – I felt completely unprepared to raise a boy. When we lost that pregnancy at 16 weeks, the only piece of information we had was that the baby was a girl. I blamed myself immediately for praying the wrong prayer.
When I was pregnant again later in 2009 I wiled away the miserable late summer months of my pregnancy by reading various parenting blogs – one of which chronicled the author’s struggles with her autistic son. I prayed again: “Please Lord, not that. I don’t know if I can handle it.”
As it turned out, I could.
Leading up to my pregnancy last spring, my prayers were about how much we wanted to be a family of four, but also how concerned I was that you would suffer for our inability to manage the needs of two children. “Please Lord, give me only the load that I can carry.” Our loss felt like the answer to that prayer, so by the summer…I didn’t know what to pray.
*****
We were only at the hospital for a few minutes before things started moving very fast. They took us back immediately and my water broke as I changed into my hospital gown. Not having seen the danger yet, I laughed as I yelled through the door to your Dad that we were definitely having a baby that night. Then, my nurse came in and I saw the expression on her face evolve from excitement to solemn professionalism to pure panic right before my eyes. Her speed, efficiency and care most likely saved our lives.
Before we could even contact our families and tell them what was going on we had an emergency on our hands – a series of circumstances that escalated to the worst possible scenario faster than seemed possible.
There are things about the minutes that followed that I will remember for the rest of my life. The nurse’s constant reassurance that your brother’s vital signs were strong. The feeling of your Dad’s hands taking off my earrings; a small piece of gentleness in the midst of the frantic push to insert IVs, catheters and monitors. The moment when I realized that, though I was trying desperately, I was not able to speak.
The look on your Father’s face as he forced himself to continue breathing.
In the operating room, a mere 8 minutes later, in the midst of the tubes and the terror of it all that same nurse leaned in close to my face so that I could focus on her eyes. She said: “Remember what you have to live for, Sharon. We’ll see you in a few hours”. My eyes closed against my will; my last thoughts in that moment were of you.
*****
One of the ways that I learned to survive your diagnosis was to force myself to stop attempting to project your future. I decided to embrace what I think is the least dangerous assumption – that you will be brilliant, strong, and happy – and not indulge myself in pity assuming that any expectations I’d had for you will or won’t be met. Who you will be in 10 years, next month or next week is not in my hands. It would never have been – Autism or not.
Still, your Dad and I could not stop talking about what your world might look like when we are not in it anymore.
We desperately wanted someone else on the Earth to see you – to love you and know you the way that we do. We longed for you to have a brother or sister – a friend to grow up and old with.
So when we were ready to pray again, we didn’t pray for a baby or for ourselves any more – we simply prayed for you. We asked God to give you a sibling to love. We asked God to see your burden and lighten it through companionship. We asked God to send another child into our family because we believed with all our hearts that it would help you in every way.
We prayed for help. And right before your 5th birthday, I was pregnant again.
*****
When I woke up it was hours later – I was in the ICU, your brother was in the NICU. For the first 12 hours that I was awake I couldn’t speak because of the respirator, and as you know, silence is not something that I excel at. I started off signing letter by letter with my one free hand and when that wasn’t fast enough, the nurses brought me a clipboard and paper so that I could write out my questions. I learned a lot of things in the first few hours – a story that played out in a series of miracles. It was immediately obvious that we were very, very blessed and – truthfully – very, very lucky.
Our human bodies are frail, Danny. Don’t ever let anyone tell you that prayer is not one of the most powerful tools in your kit, but there are some things that our flesh and blood just can’t overcome. I came close to that edge kiddo, and I will never take it for granted that I didn’t take that one extra step. Many beautiful, worthy, prayerful people do.
My Doctor the next morning told me that God must have a great plan for my life yet – that I must have something amazing to live for. I told them of course I did.
I had you.
*****
Daniel was my Granddad’s middle name. He was a strong, brave, gentle man who left us before you had a chance to know him. Your middle name is Luke after the Gospel that tells the beautiful story of Christmas, as it was Christmas Eve when I learned that I was viably pregnant after years of infertility and loss.
When we found out that we were having another little boy, I panicked a bit because I didn’t want the new baby to have a second choice name. I panicked again when the name that immediately came to my heart was decidedly different. We knew his middle name would be Martin – for your Grandpa, your Papa – but his first name stayed a mystery for a long time. As my pregnancy went on and the personality of your little brother started to shine through his movements, I realized that I constantly thought of him with that one name.
When your Dad and I looked up the meaning, I knew immediately why I had not been able to shake it. The name means help; your little brother’s name means “God’s help”.
Ezra is named after the prayer that brought him into our family and your life.
*****
Danny, on Tuesday, April 28th you woke up, got dressed, and went about your day as you normally would. By the time I saw you again 3 days later many, many things had changed. What had not changed, and will never change, is my love and devotion to you – my first baby, the little boy who made me a Mother. My pulse is forever closer to the surface because of you, and there is never a moment that there is not a part of my soul devoted to you; to wondering how you are doing, and if you are happy.
Now I am Ezra’s Mommy too and that is probably the biggest adjustment you have ever had to make. It isn’t even the last of the changes facing you in the months to come. In September you will leave the contained classroom and venture out into the general education world for the first time; in the next month you will see some of our dearest friends move out of town – just a few hours away but, to you, they might as well be moving to Jupiter. Considering that we have spent the last two weeks desperately trying to convince you to make the change to wearing shorts instead of “long pants” unsuccessfully, I am not kidding myself that all of these transitions are going to go well. I know that you are eventually going to reach the breaking point with these things you can’t control, because change is more than inconvenient for you – it is painful.
And I understand, baby, because what hurts you is painful for me too.
There will be great days and frustrating days ahead. When we are in the sun, we will savor it and when we are in the desert…we will hold steady and work to do better in the morning.
I just can’t wait for Ezra to learn all about you – your big heart; your magical sense of the world; the beauty that you see, and teach us to see, in the simplest patterns of a very complex universe.
You are God’s gifts to each other; His help and His shelter. We love you both with all of our hearts.
Love,
Mommy
This Joyful Noise 
Beautiful as usual! I am sitting here at work on my planning time – sobbing! Thank God the kids don't come to class for another 1/2 hour. LOL Love you guys! 🙂
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