And then something happens that pulls you back to what truly matters.
Over a week ago, we received news from a couple in our network of parents of boys with X-linked Myotubular Myopathy (XLMTM). This is the neuromuscular disorder that afflicts our son Joshua and which also took our little Jordan from us nearly five years ago. Donald and Nancy Serafano sent out a report on Facebook that their son--little five-year old Matteo--was in the hospital with an induced coma. While XLMTM is primarily neuromuscular and compromises the respiratory system, some boys can suffer from seizures. Matteo had uncontrollable seizures that brought on cardiac arrest, and thus followed a flurry of days in which we waited on every update from Donald and Nancy. Hoping and praying, we swallowed hard as the news came in.
Oh, how we hoped. Every day is a race against time, you see. Trying to keep these boys, all our sweet boys, alive. We are racing to a cure because of the incredible work being done by the Joshua Frase Foundation. Gene replacement therapy could be just around the corner, and Paul and Alison Frase (who lost their own son Joshua in December 2010) have done yeoman's work in helping get us there. How badly we want all our boys to have the opportunity to maybe, just maybe, kick this disease straight in the groin.
And that's what made these final days so poignant. On Friday, October 4th, Donald posted on Facebook: "Nancy and I held Matteo until his heart stopped beating at 4:30 am today."
Yeah, a lot went on in the world that day. But to me, nothing else truly matters when it's about the life and death of our children, especially these XLMTM boys who bring such delight to our lives and then are gone.
I asked Donald if I could post a follow-up narrative that he shared with our MTM community on Facebook, and he gave me permission. Every time I re-read it, it brings me to tears.
Nancy and I can't begin to express how much we miss Matteo and how thankful we are to be part of such a wonderful community.
Throughout this past week, Nancy and I have been able to and will continue to draw strength from each other, our family and friends. The love and support that surrounds us has helped us rise from our bed each day and make the most difficult decisions that a parent will every have to make.
Nancy and I witnessed Matteo's death twice. The first time was Friday September 27th at 4:30 pm at the end of therapy. The second was Friday October 4th at 4:30 am at the hospital. Matteo's first death extinguished the light behind his eyes leaving only his body behind. Matteo's second death freed his body from this world.
Even after his death, part of Matteo's body will live on in others. His kidneys and heart valves will help other children live longer and with less pain. His corneas will help other children see the faces of their loved ones and all of the beauty this world has to offer. Nancy and I were told that we would receive more details about the children that Matteo helped in about one year. Matteo also contributed tissue needed by the researchers to help continue the amazing progress that we witnessed at the 2013 MTM-CNM Family Medical Conference.
We had prepared as much as any parent could for October 3rd to be our last day to hold Matteo in our arms. We walked to the hospital from the Ronald McDonald House. Several people apologized for the miscommunications and delays during the prior day that culminated with my 'sit in'. Neurology examined Matteo in the morning and confirmed what we had known for several days.
We asked the staff to stop drawing blood gasses so that we could spend time alone with our little boy. We took turns cuddling Matteo, sobbing in uncontrollable fits and holding each other. We played lullabies and Matteo's favorite songs. We helped each other get into Matteo's bed by climbing through the ventilator tubing, medical lines and probes. Several times, all three of us managed to precariously balance in the hospital bed at the same time together.
Earlier during our hospital stay, someone had misinformed us that Matteo's organs were not suitable for donation due to MTM. Just about the time that we were ready to talk to the PICU staff about turning off the ventilator, One Legacy talked to us about organ donation. They were going to need many hours to get everything ready including a surgical suite and the surgery team. Had we known, we could have requested to speak with One Legacy two days before. The rules prohibited One Legacy from contacting us until after the second exam confirmed that Matteo no longer had any higher brain functions. One Legacy spent as much time with us as we needed answering our questions and explaining the details. We learned that Matteo's trusted Dr. J would be with the three of us every step of the way and that we would have only five minutes to hold Matteo after his heart stopped beating.
We knew that our 2012-2013 Anderson Elementary Student of the Year would want to help as many children as possible. Therefore, Nancy and I knew that we had to wait as long as needed even though we were days past emotional and physical exhaustion. The tentative time was set for 10 pm.
Matteo was exhausted as well. His heart rate slowed and his blood pressure dropped. If they fell below the minimum for too long, his organs would no longer be suitable to help others. We had given our permission to resume treatment. Dr. J and the PICU staff kept Matteo stable. We had time to thank some of great staff that had taken such good care of Matteo during our many PICU visits. They shared our grief.
Our surgery time changed several times. We gathered our personal items from Matteo's room. This was the first time that we were not packing all of the extra medical supplies for use at home. We selected and downloaded three of Matteo's favorite songs that we wanted to play during our final moments together.
At 4 am on October 4th, we walked down to surgery with Matteo. At the point where we would usually kiss Matteo goodbye, we changed into clean wear for the surgical suite. I gave the staff my phone so that they could play Matteo's music over the speaker system.
In the operating room, the lights had been dimmed, divider curtains were placed around us, our music was playing, kind supportive words were spoken, and Dr. J was close by.
I took off Matteo's g-tube extension. Even now, I did not want to take a chance of pulling out his g-tube during transfer. Nancy and I were seated together. I asked for and was given a pillow to put under Nancy's arm so that we could hold Matteo together just as we did at home.
The ventilator was turned off and Matteo was gently handed to us for the final time. Nancy and I cried and the staff cried with us. We sang You Are My Sunshine, Let's Fly a Kite and Somewhere Over the Rainbow to Matteo as we held him close to us in our arms and hearts.
Time passed and Dr. J confirmed that Matteo's heart had stopped beating. At the appointed time, we surrendered Matteo's body to the surgical team and Nancy and I were helped out of the operating room so that Matteo could give what he no longer needed to help others.
As you say good night to your kids tonight--if you have them--treasure them. Tomorrow is never guaranteed. Give a prayer of thanks to God for the days He has granted your children. Pray for those like Donald and Nancy who are dealing with the pain of grievous loss. Pray for the parents who toil on behalf of their children with conditions like XLMTM. Pray for a cure, so that despite losing boys like Matteo and Jordan, there might be hope at the end.
Because waking up and hoping for that--for me--is truly what matters.