My precious baby boy,
One year ago today on June 4, 2009, at 5:05 PM, you look your last breath. You left this world surrounded by love, just as you came into it a mere 20 weeks, 5 hours and 13 minutes prior.
Before you went to sleep for the last time, you looked at your daddy and me, and you smiled, just like you did before bedtime each night. Your big blue eyes were so wise and so calm for one so very young. Ours were filled with tears and panic as we realized that your journey with us was nearing its end. That, even as we desperately turned up the machines attached to your little body, no amount of oxygen, suction, drugs or breathing support could keep you with us. That these were our final, precious moments with you in our arms. That you had achieved your angelic mission here on earth.
As you peacefully slept, your daddy and I stroked your soft skin and kissed your face, your hands, your feet. We told you how much we loved you and how you had changed our lives. Then, we whispered in your ear that you didn’t need to worry about us – we would be okay – and that you could go. And so you did. My hand rested on your small chest as you exhaled deeply for one last time, and I said “It’s over” as I felt your spirit leave this world.
At that moment, we knew that you finally were free from the pain of spinal muscular atrophy. Free from the body that failed you. Free to rejoin the angels in heaven. Free to run and dance as you never before could.
We cried with relief that your suffering had ended and with despair that you were gone. I held you against my chest one last time, but your heart was no longer beating against mine. Your belly no longer moving as your struggle to breathe was over. Your eyes remained closed.
We were left to navigate this world without you. But, we no longer knew how. Our world was upside down, never to be the same.
In the year since you returned to heaven, we have mourned your loss every day. For a long time, we thought we had lied to you – we were not okay without you. You were whole in heaven, but we remained here, broken. You left a huge void in our lives and in our hearts, and we feared that we would never recover from the pain. How could we get up in the morning if we couldn’t see your sweet face? How could we smile, knowing that we’d never again hear your squeaky laugh? How could we bear the thought of not being able to hold you close and feel your warmth?
Then, one day, we realized that you really weren’t gone at all. That you were with us all of the time, just in a different form. You continually send us signs, and we have learned to watch and listen for them. We see you in the dragonflies that visit us, the dreams that we cling to, and the music that reminds us of you. We now understand that you will be watching over us for the rest of our lives, until we are reunited in heaven. And, we discovered that, with this knowledge, we will be okay again and that we hadn’t lied to you after all.
Last fall, we learned that I was pregnant and knew instantly that you had sent this new life to us. We believe that you hand-picked your little sister for us. I love thinking of the two of you in heaven, sitting side-by-side with your little heads touching and laughing as you talk. I know, as you told her about us, you explained that her mission will be to help heal our hearts. And, when your sister is born this summer, I hope to see a glimmer of you in her face. Again, we will be brought together.
But, understand that the void you left will never be filled. No one will ever take your place. The hole in our hearts will forever remain, and we always will ache for you. But, we are starting to get used to the pain – to look at your pictures with smiles instead of tears, to laugh at the memories of you that we share, to learn to live again.
You always will be our first born son – the love of our lives, and the child that forever changed them. You motivated an army of supporters to fight first for your life and now for your legacy. Your daddy and I are so proud of how brave you were as you battled SMA and so honored to be your parents. We didn’t know what it really meant to live until the day that you were born. We didn’t know what unconditional love was until the first time you looked into our eyes. We didn’t know how it felt to be truly helpless until we couldn’t save you from this horrible disease. We didn’t know what real grief was until you took your last breath. And, we didn’t know what hope was until you gave it to us.
As you courageously lived your life, you helped us find the meaning and purpose in ours. You made us better parents for your sister. We are so lucky to have had you as a son and now as a guardian angel. Our love for you is without limits. So, on your first angel day, please feel the love that we are sending to you and know how much we miss you. We will keep watching for signs.
Loving you forever,