Over the past week or so, we have gotten a ton of information from the Families of SMA organization- including an incredibly helpful box of toys and products for babies with SMA Type I*. We’ve scheduled doctors appointments and are all set for our PT assessment. We’ve researched and read articles. We’ve taken care of business and somehow we are able to move past the horror of this diagnosis and allow our lives to settle into a new unsettled norm. We can not feel the finality and pain of this reality every hour of the day or we would not be able to function. So most of the time, life resumes some sort of bizarre normalcy…
But sometimes, after Daisy has gone to sleep, Ethan and I allow ourselves moments of connection where we gaze at our little boy and feel the deep down, to the core of our beings pain that this disease is causing. Ezra is not in pain- which we are enormously grateful for. The pain is felt by those who love this little boy, by those who have also battled this disease, and by those who understand the powerful love between a parent and a child and how irreplaceable that love is. In those moments of connection we allow ourselves to look forward and try to picture our family without Ezra’s dimpled smile… and it’s too much to bear. God- I love this little boy so much and I just can not wrap my mind around the fact that we will not get to see him grow up.
Last night, as I was nursing him to sleep, I desperately wanted to freeze that moment. His little hand was drifting up and down my hand, his long eyelashes resting on his cheeks as he relaxed his body and became completely limp in my arms. I want to bottle up the smell of his little feet in the morning when I take them out of his footed pajamas and bring them to my nose to make him laugh. I want to capture the awe and joy that comes over his face when he sees Daisy come into a room and hears her singing his name. And so I will continue to file away these moments in my memory and know that at some point in the future, they will bring me great comfort to recall.
We continue to be blown away by the thoughtfulness and outpouring of support by family, friends and people we have never met. We are getting ready for our appointment with the pulmonary specialist in Portland and our big visit to the Boston Children’s clinic. A few days after the appointment, our daughter Daisy turns 3. She is way into everything pink and rainbow-y. We are ready for a reason to celebrate- and our little girl is the perfect excuse. Daisy taught us how big our hearts can grow once we became parents. Through her, Ethan and I have learned to love each other in a whole new and wonderful way. Because of her, I am a mom. It is the hardest, most amazing and heartbreaking job in the world- and I wouldn’t trade it for anything. While we no doubt will have many heartbreaking moments of connection over the next year, we also will have many moments of pure joy and celebration… we are doing our best to cherish all of them.
For more information on SMA please visit: http://www.fsma.org/
*The box we received has toys that are light enough for the babies to hold or interact with since most baby toys are too heavy for babies with Type I. The box also included blankets and items made by family members who have been affected by this disease. So touching and helpful…
My gosh Emily. I am bawling as I sit reading this trying to imagine what you are feeling. And I simply cannot imagine. I am so so sorry for your family and for every person who will be touched by the loss of Ezra. It is just heart breaking. You are so strong to be able to put your feelings into words and to share them.
Emily, I am also in tears but so greatly inspired by your strength and your ability to fiercely love and feel EVERYTHING!! God knew EXACTLY what he was doing when he made you Ezra’s mommy. Ezra is a blessed little boy to have you. Praying that you are richly blessed daily by him and by the time you share. LOVE to you and your family!!
Emily, today I stopped to appreciate a moment with Julia at the park, playing and just being together. Thank you for sharing your journey and reminding me to be present, be grateful. I always have tears when I read your posts. I always send you love and light. I miss you and hold you dear in my heart.
I have thought about how precious the moments nursing him must be. I’m so grateful you’re able to do that. Thinking about and praying for you daily. Ezra is making us all better, more whole people.
Hi Emily, Brooke shared the test results with me and I’ve been thinking about you and yours daily since. I haven’t known what to say because of the despair, shock, anger from the injustice of your many losses and grief that seem to flood the page when I start to write. I am grateful that we got to spend a little time with you all before the move–remember that Ezra got Paul all baby-jonesin’ again :)–and know that so many are holding you all in their reverence with love. xo
We love you and are thinking of you. My heart is hurting for you.
I’m sure he is one happy and loved little boy!
Sitting in awe and appreciation. Sending you thoughts of strength, presence, and joy.
Emily – I met you once very briefly here in Maine. My family (the Joneses) lived next to the Besseys for a number of years and I graduated high school with Ethan. As a mother I can only imagine what you are going through. The amazing joy children bring to our lives is immeasurable. I have to believe Ezra’s soul has only one mission in this world and that is to know only love and joy during this lifetime, and knowing the Bessey family he could not have chosen a better family to be a part of. My family is keeping you, Ethan, Ezra, Daisy and all the Besseys in our thoughts and prayers.
Emily, I read this last night with tears pouring down my face and I am welling up now just thinking about you and this hand you have been dealt. You are truly inspring and my heart aches for you. Thank you for reminding me what is really important in this life. Sending love to you and sweet, sweet Ezra.
I think of you often and you remain in my prayers daily. It is all I can do from a distance. Know you are loved and God will give you the strength you need, even when it makes you angry, or you think you cannot bear it. I am glad you are feeling the support of family and friends. The Bessey’s are an amazing family. Love to you.
You are such a dear person. My gosh. I hope you feel all of our love during the ups and downs. Huge hug, Suzanna
So much love to you and your family<3. Forever in our hearts!
Emily, I don’t have the words. Your amazing attitude in the midst of such terrible circumstances is more than inspiring. I try to remember our blessings everyday. Praying for you – there are folks all over SC/GA that you’ve never met who pray for you all daily!
You are so amazing. Love does make the world go round. Thank God Ezra is so loved.
Happy birthday to Daisy. I hold y’all in my heart with love.