I was pregnant. 18 weeks 5 days, to be exact. A healthy, SMA free baby girl. We did a ton of testing to make sure this baby was healthy. We waited until well after my first trimester ended to tell Daisy. Needless to say, she was so excited and told everyone, everywhere that she was going to have a baby sister. I had finally felt comfortable bringing Daisy to a midwife appointment and during the appointment, when it was time to listen to the heartbeat, my sweet midwife, Sarah let her “help” with the doppler. Minutes went by and I kept waiting for that rapid heartbeat that brought tears to my eyes each time I heard it. It never came. I kept shooting Ethan worried looks, but Sarah assured me that there have been women further along than me where she was not able to hear the heartbeat. She made an appointment for me at the hospital for an ultrasound. They were not able to find the heartbeat either. The baby measured 14 weeks. Another devastating loss. Our dreams of growing our family, of adding a sibling… shattered…
Telling Daisy was awful. In 4 years of life, her heart has now been significantly broken twice. She cried. So many tears from such beautiful eyes. So many questions, so few answers. “The baby stopped growing”, we told her. “Baby sister is in your heart”, we reminded her.
I crave normalcy. Joy. Lightness. I want a sibling for my daughter. I want to feel the kick of a baby from the inside. I want my belly to get big and beautiful. I want the pain and fear and exhilaration that comes from giving birth. I want exhaustion from a newborn’s sleepless night. I want the awe of counting 10 little fingers and 10 little toes over and over and over because I can not believe that I actually grew this little person. I want normalcy. Joy. Lightness. I didn’t realize this was too much to want.
A year ago, an old friend shared this lyric with me, “The river is long, it is cold, reaches the body, but not the soul.” I’ve heard this song before, but had never picked up on this particular line and it has stuck with me.
This year has been long. No one tells you how you are suppose to “handle” the death of a child. There are books about “how to” grieve, but there is no book that instructs on how to physically drag yourself out of bed the morning after you have to somehow hand your child over to a funeral home. Or how to inform your 4 year old that as magically as her brother appeared, he is gone. The grief creeps through numbing at times and excruciatingly painful at other times. I think one of my many fears is that this grief has the power to numb not just from time to time, but permanently. Maybe the cold actually can reach the soul.
Ethan and I were talking last night about the power of friendships. He commented on how in awe he was of how quickly my friends dropped everything and came to be by my side. He said they recognized that I was hanging off a cliff and they came to my aid. I have really good friends. My sister, Karen hopped on a plane the second we thought Ezra was getting close to dying. She was here through it all. Every sibling, cousin, sister-in-law, aunt and uncle, friend, neighbor, and stranger that came to the funeral, or sent a heart rock, or wrote us a letter, or an email or comment on Facebook… every single one of you are why my soul is not frozen. You have shared your love and created a safety net for those days that were just too hard to face.
It is snowing today. Exactly one year ago, there was a blizzard. In November, at Ezra’s headstone unveiling, it snowed big, beautiful flakes. The snow is cold, but peaceful. I am thankful for it.
Today is the day I have been dreading. A year ago my son died. My beautiful 8 month 6 day old baby took his last breath. I’m struggling with articulating how this day “feels” for me, but I do know I am so thankful for Ethan and Daisy, and for our wonderfully supportive community. I feel your love today, as I have for the past year. Thank you.
We miss our sweet boy with every inch of our beings, but you help warm our souls.
I have been trying to write a blog post for months. The bottom line is that I just don’t think anyone wants to read “I miss my boy. My heart is broken” over and over and over again… As hard as it is to believe, we are coming up on the one year anniversary of Ezra’s death- February 5th. It is incredibly surreal that we lived through that moment of him dying, let alone survived an entire year.
Today marks the 14th anniversary of my mom’s death. 14 years. How does time pass so quickly? I definitely remember the days, weeks and months after my mom died- I felt so strange in my own skin. It was like I was constantly having an out of body experience. The world around me was essentially the same, but every cell in my body felt different. I was 24.
My mom had melanoma skin cancer on top of her head when I was in high school. She did some type of intensive treatment and the cancer went into remission for 10 years. When it resurfaced, it had metastasized into brain cancer and took her in one week. One week. She entered the hospital and her body quickly shut down. One week. We had no time to process what was happening and it still seems unbelievable.
The other night, I found myself thinking about what if my mom had been alive this past year. What if she’d had to witness me losing my child. I think it would have torn her apart. As a parent, seeing my child sad or feeling powerless to help is the worst feeling in the universe. While thinking about this, for a split second, my initial thought was I’m so glad I have not yet had to witness my child experiencing heart break- only bumps and bruises and superficial disappointments… but of course I quickly remembered that this is not the case. I have seen Daisy’s heart be broken- in fact, shattered. I would give anything in the universe for her to not know such sadness at only 4 years of age. But she does, and I can only hope that this experience will create an inner strength that will carry her through life.
There is an awful anticipation to these anniversaries. How can I be sure I am honoring these incredibly important people “enough”? How can it ever be enough? And in reality, what makes the actual day of the death any different from any other day of the year? I miss them just as much in September, as I do now on the brink of these anniversaries…
As the days creep by and we get closer and closer to February 5th, all I keep thinking is “last year at this time, Ezra was still with us”. It’s been 14 years since we’ve been able to say that about my mom. So hard to believe…
My mom was a tough lady. She ran a tight ship and was an amazing cook. She taught kindergarten. Later in her life, she discovered a love of the outdoors and even enjoyed fly fishing. My mom loved her three kids- fiercely and with every inch of her body. As a mom, I now know that kind of love. I am thankful for every day that I got to witness my mom’s love… what I wouldn’t give to have just one more day.
“It isn’t easy for any of us to transcend the past, or pain we might have suffered. Yet, there are gifts in those pains, and we can choose to let light into the dark places…” -SARK
8 months and 6 days. 252 days. That is how long our sweet boy was here with us.
Wednesday October 16, 2013 is 253 days since Ezra died. This date marks Ezra being gone longer than we had him. It is shocking to me that Ezra has been gone so long. I miss his gorgeous eyes, his little laugh, and the way he felt in my arms. It is impossible to know what to do with our grief. It is so heavy and overwhelming. Somehow we’ve managed to get out of bed each day. We do our best to hug each other tight. And to allow space to grieve the way we each need to grieve. We visit the cemetery often. I need to look at pictures and videos after visiting his grave to remember how truly alive our boy once was.
Ethan and I have been working hard over the past few months with an amazing production company called North of New York to create a Public Service Announcement and to completely revamp our website. Part of the mission of the Hearts For Ezra Foundation is to raise awareness about Spinal Muscular Atrophy. We are proud to release our PSA today, on this heartbreaking day that reminds us how short Ezra’s time with us was, but how impactful his life continues to be. Please take 3 minutes out of your day to watch it… learn about the disease that took our son’s life…
We have heard over and over again how surprised people were when Ezra died because he looked so healthy. There were very few days through Ezra’s life when he looked sick. For the most part, his eyes were bright, his cheeks were full and his smile was ever present. But holding Ezra, or watching him try to move… it was obvious that something was not right.
We have shared that SMA is the #1 genetic killer of children under the age of 2. If you have been following my blog, you are aware that 1 in 40 people are carriers of this disease. You may even have an understanding of the way SMA affects the body… But all of that doesn’t illustrate exactly what it is like for a little baby- who is completely in awe of the world around him- to not be able to move.
Most newborns lack head control. Their bodies can be floppy and they need help burping, they spit up a lot, and can not roll from side to side. These skills develop over the first months of life. Parents often lament when their babies start rolling or crawling because the independence factor ramps up. The baby can get out of the safe zone the parent has put him in. He can pull himself up- or pull things down. Stairs, lamps, outlets… a once safe room becomes a danger zone.
For Ezra, this was never the case. For those of you who have had a baby, it is almost impossible to picture an 8 month old baby who has zero head control. Ezra could not even turn his head from side to side. Ethan and I would adjust his head constantly through the day (and night) so he could see different things, or to help with his breathing. Ezra’s eyes had a tremor to them- and he would roll them back in his head to refocus. The doctors assured us this did not interfere with his ability to see, but it was a constant reminder to us that the muscles in his eyes were losing strength. He had some use of his arms, especially from the elbow down. He had almost no use of his legs, and could barely move his feet.
It goes without saying that Ezra never sat, rolled over and tummy time was impossible. He had no core strength to lift his chest, let alone his head. So, Ezra spent most of his life laying on his sides and back.
We had a bean bag chair that was his special spot. We could adjust it to sit him up more at an angle, or lay him down. He also spent a lot of time in our arms, lying sideways.
Like most SMA babies, breathing was a challenge for Ezra. Being sideways helped with his secretions- his lungs were not strong enough to clear his chest. His coughs were not productive and we would use a bulb syringe to suction out his mouth and throat. As the disease progressed, we used a suction machine to help clear out his lungs. He hated this, and we only did it when absolutely necessary.
Ezra was trapped in his body, but he did not know he was. He knew no other way. He didn’t lose use of his legs- it was just never there. We are trapped in a different way. We knew Ezra’s love and now we need to learn to live without it. I feel so trapped by my grief. It is claustrophobic and limiting. I find myself crying in restaurants with sweet, compassionate friends. I visit the cemetery at night, so I can let go without the groundskeepers hovering nearby. Life has lost so much luster for me. I feel happiness, but it’s always shadowed by sadness. I am traveling to a funeral today. One of my very closest friends lost her mom to cancer and I ache for her, because I know the rawness of what she is feeling. The empty sadness. The trap of the new reality- learning to live without someone who is so interwoven into your day and life that how on Earth does the world keep spinning without them here?
The month we received the Spinal Muscular Atrophy diagnosis
Ezra was born right on time- perfectly on his due date. My labor with him was focused, quick and powerful. When he entered the world, our family was complete… there is such an emptiness without him. It’s impossible for me to think about Ezra’s birthday without thinking about his death. The last picture above was taken a few hours before he died. He was surrounded by love and it could not have been more peaceful. He had been “sleeping” for most of the day… in the last hour his breaths began to space out, so we knew the time was getting close. Right before he took his last breath, he opened his eyes and held my gaze. He then shifted his eyes to Ethan. It was such an act of love.
I never thought in a million years that I would have my child die in my arms. There was also a time when I never thought I would be lucky enough to be pregnant- to feel a baby move from the inside, to watch my belly grow bigger than I ever thought possible. I know what a gift Ezra was to the world and to our family. He taught us about the importance of moments and reminded us of the fragility of life. I feel so lucky to have gotten to be his mama. We have felt immense love from old friends, family, individuals we have never met and our new community in Maine. While it is very difficult for me to want to “celebrate” Ezra’s birthday, I do want to celebrate his life… and his impact on the world. Our sweet boy is never far from our thoughts and always present in our hearts…
The last time we were in Austin, we had a beautiful 2.5 year old girl and an amazing brand new baby. In a period of 6 weeks, we sold our house, gave birth, packed our house, moved to a rental, and then finally made the move to Maine. That was July 2012. Summertime… boat rides, blueberry picking, swimming in the lake. Our biggest concern was finding a new home for our family. Our family… our 2 children and 2 dogs… we looked at dozens of homes- picturing our kids growing up in the bedrooms, playing in the yards. Where would they do homework? Hang out with their friends? What schools would they go to? We were so unaware. Blissfully unaware.
And 10 months later, our whole world has changed. Daisy had spring break from school, so it seemed natural to head back to Austin. During this trip, I was reunited with one of my very closest friends. I have not seen her since before our move. Every time I saw her during our week vacation, I broke down. It didn’t matter if it was in public at a bar, at her home, at a park… So many tears. I kept thinking- the last time I saw her, Ezra was here. The last time we hugged goodbye, Ezra was probably sandwiched between us. She probably kissed his head. Held his hand. So much has transpired. This friend photographed his birth and witnessed the moment he came into this world. She saw the support Ethan gave me during labor and just how hard a mama can work for her baby. She saw it all… and continues to. It’s not always neat and tidy- it is life and it is love.
Ethan and I were 2. We became 3. And then 4. How do we become 3 again?
Before having children, it was hard to imagine making room for them in our lives. How can we afford them? Will we still be able to go out and see music? Will we be “good” parents? Will we like being parents? How will it change our relationship? And then the baby comes. Suddenly it becomes incredibly difficult to remember life before baby.
So then imagine after learning how very large our hearts can grow- feeling how much joy and awe we have for these little beings- watching our daughter rise to the role of big sister… to lose our child. It is such an impossible feat. It’s not like the heart shrinks back to size after losing a child. The emptiness feels cavernous… 12 weeks ago tonight we lost him. Those eyes. That smile.
And so we found ourselves back in our old city. We visited our favorite spots, and ate way too many tacos. We created new memories with family and friends with lots of happy smiling photos, and always in the back of my mind was what the hell is going on. Ezra should be here with us. How did we come full circle back to the city that we love only 10 months later, but really a whole lifetime later?
I do love our Austin community. They have been incredibly supportive and often share their love and sadness with us openly. We appreciate it beyond words. To our Austin friends… thank you for making time to visit with us, to cry and laugh with us… we hope to see you all again soon.