joey bear

Ever since Joey’s diagnosis last year birthdays, holidays and anniversaries have brought with them a mixed bag of emotions. When we celebrated David’s 4th birthday last November I wanted nothing but a joyous occasion surrounded by friends and family – it was an extraordinary day filled with so much joy and happiness.

Christmas was precious and post-Disney kind of magical. We had just gotten back from Florida and Joey’s Big Wish trip and were filled to the brim with gifts, sunshine and sweet memories.

New Years Eve was brutal. It hit us like a heart attack. Resolutions and goals for the new year felt like a big joke. The uncertainty of the coming year, not knowing if it would be our last with Joey made us sick to our stomachs. Never ever had words like prosperity and favor felt so shallow before.

Joey’s second birthday was no less grueling. Grateful, obviously, for every moment with our son I had a hard time not to succumb to overwhelming sadness and grief. We had heard and read that a child with GM-1 type 1 typically didn’t live past two…and here it was, his second birthday. I was overcome by gratitude and grief at the same time. Instead of another joyous birthday party with all of our friends and family our souls needed something different this time – time together as a family just Sam, David, Joey and I.

Oh, and I ‘escaped’ Mothers Day by spending 48 hours in a hotel room, eating good food, watching movies and talking with a very dear friend of mine.

Tomorrow Sam and I celebrate nine years as husband and wife and despite our son’s terminal diagnosis I’ve never wanted to celebrate this day as much as I do this year. We owe it to Joey and David and most importantly, we owe it to each other to invest in our marriage and make it priority. I remember a conversation Sam and I had a few months ago about Joey’s plan of care. We had some difficult decisions to make and I needed Sam’s input on some feedback I had received from Joey’s doctors that day. Typically, Sam and I agree on most things related to our son’s care but there were some gray areas and some details that we seemed to disagree on. Instead of arguing his case Sam just looked at me and said, “If that’s important to you I support you in that decision. When this is all over you and I will still be here and you are more important to me than anything we are going through right now.” I’m not sure he realized the weight of his words that day or how much they reminded me of similar words he had spoken to me almost nine years earlier… of loving me for better or for worse…in sickness and in health.

Hardship can mess with the lens through which we view our life and our circumstances. Life gets tough and often we lose our focus and perspective. For us, slowly losing a child to a horrendous, fatal disease sometimes makes us want to give up on everything and everyone. But, in the words of my own husband, when you are tempted to give up is when you need a different lens and perspective the most. It’s when you need to zoom out, not in. To be patient and forgiving. To be kind and gracious. Struggling and barely surviving is one hundred percent OK. Doing life in the midst of devastating hardship is not easy, but it’s important to remember that this isn’t necessarily the end, but rather only a chapter in a not yet fully-written book. I’m speaking this to myself as much as I am to anyone else knowing it can be extremely difficult at times.

Sam and I still have a long journey ahead of us and we wouldn’t be where we are today if it wasn’t for amazing friends that have chosen to love and support us through all of this, our counselor, who provides a safe place to process and grieve together, and most importantly a loving, faithful Father, who has and will sustain us through it all….the third chord in our marriage.

“Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up. Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.”

– Ecclesiastes 4:9-12

Finally, to Sam, my beloved and best friend, I couldn’t tell you how much you mean to me and how much I appreciate doing life together with you. You are humble and faithful and you love me better than anyone else. You are an excellent father and I see so much of you in both of our children; your unconditional love, thoughtfulness and fearlessness in David and your perseverance, strength and courage in Joey. You are steadfast and unwavering and have always put me and our family’s needs first. You have always been a hard worker but ever since Joey’s diagnosis you have worked extra hard so that I can be a full-time caregiver. You are both fun and funny and never miss an opportunity to make me or anyone else laugh out loud (when we received the horrifying news that Joey’s g-tube was in his colon instead of his stomach I spent more time and energy laughing at Sam’s bad, yet witty and medium inappropriate colon jokes instead of yelling at the surgeon who messed up our son’s intestines). You are everything I ever needed and I’m proud and honored to be your wife.

Happy Anniversary, Babe!