It’s been 8 weeks since we last made the drive down to Children’s Hospital. I’ve thought about visiting our liver transplant coordinator, I’ve thought about hand delivering a “thank you” note to the nurses and doctors who cared for him like family from the day he was born, I’ve even thought about writing a note to the parking attendants who were so generous with us all those days I lost my parking validation, those days I forgot cash, the days I was obviously distressed, when they said a kind word, let me pass for free, gave me the discount anyway. I knew them all by name.
It has been too hard to even think about that part of our life. It has been much easier, and I believe more healing, to forget all of that for 8 weeks. But not forever.
A lot has healed. We spent the first week after Kye Matthew’s death scrap booking. This was somewhat out of necessity, as I needed to have books ready for the memorial services, and I wanted to give them to family at that time, but it was also provided some much-needed distraction by very good memories about Kye Matthew. He was such a wonderful little boy. Every smile was perfect, even if filled with little green teeth! He was buried a week after he died, and we spent the next few weeks resting, cleaning, hugging children (I will write a post about my observations of my children’s grief one day, as it has been fascinating), and trying not to be alone. People have not bothered us, and have been very kind and gentle with us when we ignore them, which we are very grateful for. Semi-hermitage has been the perfect prescription for our grief. We called our adoption worker to start the long, laborious process of renewing our home study, and got the amazing news that we would NOT have to renew, that our old study would do! What joy, as we thought we would need to deal with paperwork for a new child while grieving for Kye Matthew. I had dreaded that for 2 months! With each passing week, I have been able to deal with one more Kye Matthew thing. His crib is still made up for him. Sometimes one of the kids sleeps in it to be close to him. His wall art still hangs over it, his blankets are still in it, his stuffed animals still reside there. His toy basket still sits on the shelf, and I panic when other kids play with it (I’ve had to work really hard on this because his toys are SO FUN and really ought to be played with!). His clothes are still in his cubbies and in his closet. His diaper bag has gone untouched. I have come across random pieces of his laundry, and for weeks I could not wash them, but drank in the smell of his sweetness. We finally threw away his medicines and found a home for his medical supplies. Yesterday I took his car seat out of the car and put his car trip toys into storage. I gave his diapers away and put the second booster chair from the table into storage. Little by little, we are figuring out how to keep him around without keeping all those empty spaces around.
Last night, we made “the trip” again. The I-15 south in the carpool lane, the sound of fighter jets at Miramar, the carpool lane exit with only seconds to spare to make it onto the 163 south, passing the car dealers with all those “silly jumpping air men,” passing Montgomery field, looking out for the stork on Sharp Mary Birch, the Genesee exit, passing the courthouse and Juvenal Hall, the parking structure with Ronald McDonald sitting creepily in front, and the hospital. It was odd to feel the weight of the world on our shoulders once again, and try to shake it off, because this time, our boy was not sick and dying, we were not here to visit him, we were here to remember him.
We made it to the Healing Garden and sat with all those other families who had lost their babies in the past 3 months. There was the family whose boy had an illness they would not name but had battled from birth. He died when he was 6. There was the baby who was “11 months old, 4 days shy of his 1st birthday,” who had been dropped off at daycare and had then inexplicably not woken from his nap. There was the family who’s boy had battled cancer for 4 1/2 years, and at age 9, he finally lost that battle. There was the 16-year-old girl whose family sobbed in the row in front of us, her little brother using an entire box of tissue while his older brother comforted him. There was Kye Matthew, whose life was so short but so blessed. And then there was the 17-year-old boy whose parents had fought for him from birth. His mother described him as “non-ambulatory and non-verbal,” and yet she never gave up on him. She talked about Children’s as her home away from home. Her boy had spent so much time there, they usually got the same room, knew other families, smuggled wine in to share in the common courtyards after the children were in bed, knew all the special places in the hospital, knew the best food in the cafeteria. They were like us, except they had done this for 17 years, not just 6 months.
It is odd that through all of this, the times I feel the most blessed is when I am with others who know exactly what we have gone through. There are so many people we love who have helped us, cheered us up, who have helped us in indescribable ways, but who don’t understand the depths of pain, the “what it is like,” to lose a child, thank God! I will always remember a man who came to talk to our class when I was in college, and he had lost both his arms in a chemical explosion at work. His wife died soon after, and he was left with 2 small children to raise and provide for – AND HE HAD NO ARMS!!! This man was amazing, he learned how to use his prosthetics like they were real arms. We all sat transfixed by his ability to turn pages, button his shirt, even get into his prosthetic contraption all on his own! But I will always remember him telling us never to forget, as we worked with our patients, that until we lost our arms, we could not understand the depths of loss one experiences. And he told us not to try, and instead to thank God every single day that we still had arms and fingers to play the piano with (the ONLY thing he could not learn to do with his prosthetics!). He said that he didn’t want people to focus on his arms, to keep reminding him that they were gone. Instead, he wanted people to acknowledge that they were gone, and then be normal to him. But he said the most helpful times he spent, even after 40 years of dealing with his loss, were the times he met up with a person who, like him, had lost a limb. I wrote in my notes that day something like, “Don’t feel bad or weird if you can’t relate to a person with no arms. Thank God that you do have arms, and live the wonderful life God has given you, and be a friend to this person. Let those who have lost arms be the best comfort to others who have lost arms.” Weird the things you think about when a person is trying to comfort you in your loss, stumbling over awkward words, and you are thinking, you just don’t get it! But then God gives you the grace to be compassionate and accepting of their comfort by giving you a memory of a man in your class!
Those who have lost children, or have truly almost lost children, or whose children are gravely ill and in danger of dying, hold each other up, keep each other going, they say the right words with no awkwardness. They have been forced to accept what other parents hope never to accept. The parents of the 17-year-old were probably the most healing individuals I have met. They lived the life we understood was a real possibility for us, had our Kye Matthew survived aspergillus. Kye Matthew would not have been a well person. He likely would have suffered mentally from the oxygen deprivation he endured over the 6 weeks. He would likely be bed-ridden, for the most part. Every illness in his future would likely put him in mortal danger. He would suffer an early death after a lifetime of suffering, probably before he reached his 20’s. There would likely be no more running around, not more trips to the park, no more laughing around the table, no more wild shopping cart rides in the parking lot, no more Legoland, no more Zoo, no more Disneyland, no normal life. He would likely have spent a very significant portion of his life back in Bernardy Center at Children’s because his body would be too fragile to go home. But every life is worth living, and we were so excited about even this different life we were preparing to live with him. These parents had lived it. They were tired. Their faces showed extreme wear and tear. Their eyes were wide and wise. They had accepted the horrors of life on earth, because they had lived them. For 17 years, their son had a death sentence, and death finally caught up with him. Fear and suffering were an accepted way of life. The extreme inconvenience of raising a family in two places, an hour apart, was endured and overcome and accepted. And in the end, as devastated as they were to have lost their boy, they were relieved, just like us, and they understood this weird feeling of overwhelming grief and overwhelming relief. We were just getting to know the lifestyle of living with a very ill child. We only spent 6 months in love with our baby, willing to sacrifice all for him, and the re-adjustment to “normal” life has been somewhat easy. We only dealt with 2 major, extended hospital visits with our boy, the endured 17 years of them. Their re-adjustment to “normal” will never take place, because they have forgotten what “normal” is. They were such amazing, lovely, war-torn, wise, crazy people, they reminded me so much of ourselves, and they answered a question I had during all those 6 weeks we spent with our dying boy: Do we really have the strength to virtuously endure years of this? And the answer is “yes,” because as this couple said over and over again, “That’s what Mommies (and Daddies) do!” You make it happen.
And so I learned a very important lesson through comparison with them. We have been on a journey in our parenting lives, not having much concern for the immediate happiness of our children, but with great concern for the relationship with God and the virtue of each of our family members. We daily tend to our relationships with God, to our habits, to our souls. We have decided to obey God’s commandment to care for the widows and the orphans by getting our hands dirty, by going about the business of the Father in any way He sees fit. God has been gracious to us every step of the way, by first giving us an orphan to practice on, a beautiful, easily molded lover of goodness and God, a spunky little spitfire, in Kiki. He showed us that love for a child has absolutely nothing to do with whose belly they grew in, whose genes they have, what color their skin is, how long it takes to brush their hair, how many mothers they have previously had, how little you know about the time before you knew them, how much neglect they have endured, how many heartaches they have been through, and how determined they are NOT to care if they are abandoned by yet another family. Children are blessed with hope, and more hope, and more hope again, and those who fulfill that hope by giving them a forever home will be blessed by God in very amazing ways. With Kye Matthew we discovered that saying YES to God when called to do something a little more difficult, by giving a suffering child a chance to live well in his last months, by showing that child that his suffering need not be a lonely, horrible experience (I will always remember Sunshine holding his hand so many days when he was in the hospital being poked and prodded, or Kiki taking him from my arms and comforting him after he had labs drawn, or Judah giving him toys to play with and having “man talk” with him as we drove to yet another procedure, Kye Matthew sobbing in anticipation), by giving a modern-day “widow,” a teen birth mother, some kind of hope that her boy was living life well despite his serious physical illness and giving her a relationship where she was not judged but instead loved (and we love her desperately still!), by doing all of this God has blessed us with even more certainty that we can serve as thriving members of the Kingdom of Heaven to bring about His purpose on earth.
I am going to say something very controversial here, but I strongly believe I am right about this: Those who are living lives to bring about the comfort and daily happiness of their children and themselves as a primary goal, are doing wrong. Instead, all parents should list the possibilities to serve in the Kingdom of Heaven (they are all there in the Bible, anyone can find quite a comprehensive list within an hour of searching) and pursue as many as they possibly can, with their children, change their lifestyle to TODAY! Oddly, God is right. You AND your children will be blessed (not that this should be a concern, as we ought to obey God even if we gain nothing), and your entire family will have the joy you have been chasing all along, and never find. So go ahead, adopt a child, or two, visit the sick every day, or every other day, make friends with a homeless man (yes, MAKE FRIENDS!), visit those who are imprisoned. Don’t sit around doing the procrastinating Christian’s avoidance thing of praying for God’s will about which is right for you. THEY ARE ALL RIGHT! You already know what you are good at, what gifts God has given you. Pick one and run with it. TODAY! We were never called to be happy. Not once does God place value on happiness. God places value on shalom, on serving in His kingdom, on caring for those who cannot care for themselves, and that is rightly where our efforts ought to be aimed. The care of your children’s souls, which is what God cares about, will be a natural consequence of your obedience to God, and they will learn to obey God through your obedience, and you and they will have shalom.
🙂
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