After my post yesterday, I got many emails and texts from friends asking what they can do to honor Maxie's memory on Sunday. I have been thinking about it and here are my thoughts:
1) Please remember that Maxie is our son. He was a living, breathing, beautiful human being. He and Mo mean everything in the world to us...as your children do to you. Please remember to be compassionate with us (BOTH of us). Even when it doesn't seem like it, please know that we are fragile. Many days we are barely hanging on. If you don't have something nice to say to us, please don't say anything. This is a favor that I ask from you for every day, not just Sunday. You will honor Maxie's memory by respecting and honoring his parents feelings.
2) Please say a prayer for Mo and any of our future children that they should live long and healthy lives. To live through this a second time would be beyond devastating. I don't think we would make it. Mo deserves to live (so did Maxie). Even if you do not believe in the power of prayer - perhaps you can just say one in case.
3) I know that you have given generously to Maxie's Forest and the trees that grow there will be a beautiful honor to the memory of his life. And while I would burn them all down to have Max back, in his absence, they are a beautiful testament to his life. Please think about donating again in Maxie's memory to research the cause of SIDS. I know you think SIDS doesn't happen - it is so statistically rare that it hardly ever occurs. The truth is that SIDS is the leading cause of death in children under the age of one. NOBODY should ever have to live through this horror. My life will never be the same. My soul is aching and breathing is a chore. Please think about donating to Maxie's First Candle Fund - researching the cause and cure for SIDS and supporting bereaved families like us. You can click here: https://www.z2systems.com/np/clients/fc/campaign.jsp?campaign=353 or click on the Team Maxie logo on the right side of the blog. It doesn't have to be a big donation. Think about $11 - the ones adding up to 2 for what should be Maxie's second birthday. That might be the cost of the Fisher Price toy he would have received on Sunday anyway. What a gift to us it would be if the cause of SIDS was found before we had our next child and that at least worrying about it could be something we could put to rest. It is so hard to be living with so much fear for Mo while simultaneously grieving for Max.
Thank you so much for asking how you can support us. Thank you so much for supporting us period! We love you and are so grateful for our family, friends, and supportive strangers!
XOXO
Maxie's Mommy
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Dear Maxie's Mommy and Daddy,
I am one of likely many strangers who landed on Maxie's page from another's via a link. I don't even recall how or where. But isn't that the beauty of social media? I have no connection to SIDS. I do not, rather cannot have children. I say all this as a way of sharing that in so many ways I cannot fathom the pain. You are right when you said "missing" is an insufficient word. I am a pediatric oncology nurse. I work with children who are sick every day. That fact being said I work hand in hand with death. But that isn't even what I want to say or why I am posting.
You see I want to offer you a gift of sorts. A glimpse into your future. A story of a family's survival. My family. My brother died when I was three. He had leukemia. My parents were young. They had three surviving daughters. They went on to have another son. I recognize that our stories are different in many ways. I will not engage in any of the stupid platitudes or comments that seemingly well meaning people say out of a desire to help and utter ignorance. Here's a good one for you. When my mom was pregnant with me my brother had relapsed again. After I was born and was indeed yet another girl my parents actually got a card from "dear friends" that they signed, "Bettter luck next time!". I was born in 1966...people have been helplessly stupid in the face of death for a very long time.
Here is what I want to share. My parents suffered a loss that thankfully most people will never understand. It is a puzzle this understanding. You want desperately for people to get it, to feel it, to live it, this loss that defies logic and words. On the other hand you would not wish it on your worst enemy. So you go through the rest of your life doing it alone and hopefully with a circle that chooses to try to get it. My family is on the other side. We are 44 years on the on their side. We survived, even thrived. My siblings and I are whole and evolved adults. We are happy. My parents had, have genuine joy in their lives. Oh the "missing" is always there. My mom once said that the pain never goes away. It just ceases to hurt so damn bad. My dad has joined my brother. There is comfort believing, knowing they are together. We remember David every December 8th on his birthday and every April 12th, the anniversary of his death. We remember. Most people in our lives don't . But we do and that is enough. To this day when my mom is asked how many children she has she proudly answers 5. She was always ahead of her time in this grief business. when the experts said it was too hard to keep David's pictures and belongings she ignored them. Every year as kids we celebrated his birthday. We still do in less obvious ways. We moved on and we took him with us. And life has been good.
Dear Maxie's parents. I hope my story offers a window into a future where your grief and joy can peacefully coexist. Our hearts are designed with infinite elasticity and there is room for both. I am praying for your Maxie and your darling Mo. I am praying that your pain ceases to hurt so badly sooner rather than later. I am so sorry that your beautiful boy died. I am so sorry. I have hope for your future. I pray you feel that hope.
Happy second birthday Maxie.
i will be honoring Maxie and his incredibly important life on Sunday. sending you lots of love.
My dear friend Abby...being one of the friends who texted you about how I can honor Maxie on his birthday- thank you so much for this post. I am so sorry that he is not here, in your arms. I know that he is always with you, Ted and Mo though. He feels your love, as you can feel his. Thank you for letting us know how we may honor your beautiful boy. xo
We'll be thinking about Maxie on Sunday and sending his mom, dad & brother all of our love. It's so unfair he is not here with you. We'll be saying a prayer. Love and miss you guys.
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