Matthew Chambers and his wife Victoria welcomed their son James into the world on March 19, 2010. The next few months were filled not only with multiple surgeries and medical interventions – but also with moments of unspeakable joy and intense love. Matthew talks about his son and how what they went through together has shaped his family and who he is as a father.
What was your NICU experience like and how has it made you want to reach out to other families?
The only way I have ever been able to explain the NICU to someone is by comparing it to waking on Mars. You’re not really sure how you got there, and you really don’t know what you’re doing, but you know you better do something quick or things are going to get ugly. I had never seen the inside of a NICU before James was born, and no matter how many doctors or nurses tried to explain what was going on, nothing made it feel any less martian to me. So experiencing it firsthand shocked me; living it for over six months left me haggard, confused, emotionally drained, and searching for something that made sense. To me, helping other people understand what is going on in terms they can understand is a big step in that direction.
How has sharing with other parents honored James’ life?
After losing James I realized that almost everyone I talked to was really only able to say “no parent should outlive their child.” Then as time ticked by, they expected life to move on, the memories to fade, and life to return to “normal.” There is no normal after you lose a child, there is no fading of the memories, and there is no business as usual. Your life is filled with a keen awareness that part of you isn’t where it should be and your life becomes more focused on NOT forgetting, NOT letting memories fade, and NOT allowing someone else to feel forgotten in the chaos that follows the loss of a child. I became involved because of James’ life and because he would have wanted me to help those who felt the confusion and pain of losing someone.
What would you like to share with other bereaved families?
So many of us believe that we lost a child. I disagree. I didn’t lose a child, he isn’t misplaced, and he certainly isn’t gone from my side. People lose their keys, their purse and their wallets – our children are not items to be lost. I had a piece of my soul torn away from me against my will. I was mugged, in the rawest sense of the word. Yet still he is not gone. My friends, as the days turn into weeks and the weeks into months and years, you will realize your child isn’t gone. Our children are around us if we simply open our eyes to see them. Whether it is the sudden calmness that overtakes us when we say our children’s names, the goosebumps we get when we speak of them, or the peace that overtakes us when we open our eyes not wholly awake yet not asleep. After the pain gives way, a new emotion will fill our seemingly bottomless void – pride. You will find yourself proud of son or daughter, they showed up for the fight, they gave it their all, they did not waiver, they did not hide. Our children put up the good fight, they did amazing, and they left only after all of the rounds had been fought. We did not lose a child, we sent forth a champion, and every so often they are kind enough to visit and let us know that they are waiting for us. Don’t mourn the passing of your child, celebrate that they showed up for the fight. It truly is what they want!
What would you tell parents about being in the NICU and facing the possibility of losing a child?
Throughout your entire stay in the NICU, I can promise you that you will be stressed out, sleep deprived, emotionally drained and frustrated beyond belief. I can also promise you that one smile or touch of your son or daughter’s hand will make it worth every moment of it! There is nothing I can say to anyone that may lose a child that I haven’t. Just remember, we don’t lose children we send off champions! 
What do you wish someone had told you?
I wish we knew sooner our son could have had an assigned nurse, what all the medical terms meant, what all the equipment did, when baths could be given and that we could help do them, that the curtains around our child can be closed so we can feel a sense of privacy, that putting my finger in his hand is okay, and that we could bring items from home for him, that Hand to Hold existed, and that it’s okay to pull up a chair next to your son and simply take a nap rather then having to go home and return.
What do you think bereaved families can do to support each other?
Hand to Hold is a huge start. I would also love to see a system where a specially-trained NICU Mom or Dad can be contacted when it’s time for “the talk” and who has the information for resources to help with funeral arrangements, travel, etc. So many families think it all has to be decided so quickly and with such finality that it is overwhelming. I firmly believe in the remembrance ceremonies and would like to see a space for people to put up pictures of the kids that don’t make it that isn’t too near the NICU – a private garden with the names of our children perhaps. We all need somewhere to go to remember in peace and being at the hospital where we gave birth or said good-bye already has the emotional connection. I also want to say that no two people grieve the same, so meeting before the death of a child is a critically lost part of the process. V and I met other families while we were at the NICU and we all traveled the road together, a misfit band of worn out travelers per se. Some of our group’s kids went home, others weren’t so fortunate. We all still talk to this day. Having a meeting once a week for the families in the NICU sounds great on paper, but can come off too prepared and sterile for people who are experiencing such an already “sterile” environment. Set aside a room inside the secure part of the NICU, slap a sign on it that labels it for Moms and Dads and throw in a few drinks and snacks, then sit back and watch friendships develop!
We know that you have a new daughter. A lot of families worry about getting pregnant again and having another child after a loss. What would you tell them?
V and I talked to all the doctors, we gathered the best information at hand to be sure we knew what the odds were before we tried. I would encourage families to allow autopsies. Not only could your child’s death help others avoid the same situation but also autopsies answer questions and provide information so that you can make informed choices with your family. In short, gather all the information you can and make an educated decision. If you’re not comfortable with the risk and aren’t prepared to go through it all again, consider adoption and other options. If you’re not sure if you’re ready, wait a bit but understand you are never really 100% sure or ready. If you’re waiting to be 100% sure, it could be a long wait. I would also emphasize that having another child is not replacing your child that passed. V and I believe so firmly in this that all of our children will have James’ name as a middle name. We want them to remember him and know that their big brother is there with them.
Any last thoughts?
I cannot explain to people enough that the NICU changes who you are. As I said two years ago in the letter to NICU fathers on Father’s Day, a NICU Dad is not like any other. We hold special challenges and responsibilities. I will forever be a NICU Dad, treasuring small moments and relishing big ones, finding peace in smiles and touches of my child’s hand. I spent almost two hours last night trying to get my ten month old to sleep, at one point sitting beside her crib “nibbling” on her fingers when she stuck them out of the crib at me and listening to her giggles each time I did. Many Dads would have come down the stairs grunting and grumbling. I came down the stairs feeling rather accomplished…I had earned some smiles and a handful of giggles. My night was perfect to me. Good speed and God bless, I may need a lifetime to change the world in the smallest bit. My son changed the worlds of everyone he met and did it in just six months eleven days. The next time someone is telling you how great their accomplishments are, point that one out!