Remembrances of Heaven’s Very Special Child
A meeting was held quite far from Earth! It’s time again for another birth.
Said the Angels to the LORD above, This Special Child will need much love.
His progress may be very slow. Accomplishments he may not show.
And he’ll require extra care from the folks he meets down there.
He may not run or laugh or play. His thoughts may seem quite far away,
In many ways he won’t adapt, and he’ll be known as handicapped.
So let’s be careful where he’s sent, we want his life to be content.
Please LORD, find the parents who will do a special job for you.
They will not realize right away the leading role they’re asked to play.
But with this child sent from above, comes stronger faith and richer love.
And soon they’ll know the privilege given, in caring for their gift from Heaven.
Their precious charge, so meek and mild, is HEAVEN’S VERY SPECIAL CHILD.
Edna Massionilla, The Optomist- newsletter for PROUD, Parents Regional Outreach for Understanding Down’s Inc., December 1981.
My Musing – Every child is precious to our Lord, and in a sense is Heaven’s Very Special Child. But today, if you will indulge me, I am sharing some remembrances of our oldest son Joshua, who died twenty-five years ago today. He was only nine years old. Because he was born with severe physical and mental disabilities (see “Cain’t Leaves His Mark”), there would be no graduation celebrations. No major birthday milestones after his first, as he never lived to see double digits. No coaxing him to take those first few steps. No teaching him to ride a bike or drive a car. No playing catch with dad or baking cookies with mom. No petty fights with Joel over what television shows to watch or toys to play with. No Cub Scout meetings, father son campouts or pinewood derbies. No first dates. No coming to mom or dad for advice. No visits to see which college he would attend. No awards to hang on the wall.
And yet there are so many other memories that are indelibly inked into our mind. So much of our own character development we owe to having been privileged to care for him. So in this section of Our Family Album we share special memories of one of Heaven’s Very Special Children.
You were never destined for greatness, as the world measures greatness. The severe physical and mental handicaps suffered at birth prevented that. The prisoner of a broken body and broken mind, developmentally you remained an infant for all of your nine years.
You were never destined for the long life that so many covet. In frail health, you seemed to recover from one serious illness just in time to begin the next one. Until the final illness that claimed your life.
These things, perhaps, would indicate a life of little or no significance. And yet if insignificant, then how do we explain the sense of loss that we still feel after so many years? It is explained by realizing that our loss would be so much greater had you never been a part of our lives.
Unable to say that you loved us, you taught us how deep love can really be. Too weak to wage a valiant fight against the tremendous odds you faced, you taught us a thing or two about courage and faith. You were a living portrait from God. Reminding us that if all we live for is what life gives us, then we are the ones who are handicapped by such a limited view.
- Greatness? Perhaps not in the World’s view. But in our mind, for sure.
- Long life? Not as measured by the calendar, but when measured by the memories you left us with, eternal.
- Insignificant? Hardly. The impact you had on so many other lives cannot be fully measured.
- Loss? Indeed. Because we gained so much from you while you were with us and it hurts so deeply to be separated.
But we will not be separated forever. Someday we too will be a memory for someone else to recall. But when they do, we will have been reunited with you. For this we thank a God who understands. For you see, He lost a Son once too.
We received this card from a work colleague when Joshua passed. The verse touched us and reminds us of the butterfly effect. What is the butterfly effect? It is where a small change at one place can result in large differences in another. The name of the effect, coined by Edward Lorenz, is derived from the theoretical example of a hurricane’s formation being contingent on whether or not a distant butterfly had flapped its wings several weeks before.
So it was with Joshua’s life, that seemingly insignificant, broken life that could not possibly have been expected to have an impact at all. His life seemed to be a small and insignificant change in a vast expanse, barely noticeable. Yet, he touched lives in a way that we could have never imagined causing large differences in how they viewed life and eternity. Here again we can see that “God chose the foolish things of this world to shame the wise; God chose the weak things of this world to shame the strong. He chose the lowly things of this world and the despised things – and the things that are not – to nullify the things that are….” God chose the butterfly. Incredible as it may seem, God chose Joshua.
I mentioned before that I have somewhat of a Norman Rockwell outlook on life, preferring its simple pleasures. I also like Frank Capra movies. One of my favorite is It’s A Wonderful Life. If you are familiar with the movie you might recall this reference to the butterfly effect by Clarence, the angel trying to earn his wings: “Strange, isn’t it? Each man’s life touches so many other lives. When he isn’t around he leaves an awful hole, doesn’t he?” Well, Joshua’s life touched so many and would have left an awful hole if this seemingly insignificant life have never been. Read on, to see how he affected ours.
HIs Mom Eileen Remembers
I have so many memories of Josh, beginning with the anticipation of his birth. The doctors had given us a fifty-fifty chance of taking home a live baby. The day came, they had done some tests and Josh was in trouble and I was too. So they decided to take him seven weeks early. After I woke up I was told he was okay, he had ten fingers, ten toes. Then I went back to sleep. I was in intensive care unit for several days and it was five days before I could “see” my son. Then the day came and I was wheeled up to the NICU. When they put him in my arms, the emotions, the love, everything just came flooding into me. I could not believe how small he was, but he was a whole little person. The love, it was so overwhelming my heart was aching, but with a joy of holding him.
After Josh spent the first three months of his life in the hospital, and after Steve and I learned how to feed him through s tube that went up into his nose and down into his stomach and changing that tube he finally came home. It was such a joyous occasion. I remember carrying Josh around to each room telling him what room was what – this was his bedroom and this was his bed. Sometimes in the middle of the night when Josh did not want to sleep, when he would be unable to sleep, I would get him up and we would “dance” in the living room. One song in particular I liked to dance with him was Houston.
Some of my special memories with Josh were when we would snuggle together. We would “talk” back and forth. I would say something and he would babble back. He would get into these laughing spells every so often. Josh did not laugh too much, but when he did it was so infectious. We would just start laughing along with him. One particular time was when Josh and Joel were coming back from grandma and grandpa’s house. Joel got reprimanded for doing something and Josh just started laughing. It was funny.
As he got older, he would lie on the floor on his back and he would rock back and forth and babble. If I was in the kitchen he would work his way babbling and scooting towards my voice, just yelling “hey!” Those were good moments.
Christmas of 1988 we had our Christmas Eve get together with my family. Josh was not doing so good, his lips were a little bit blue. So we took him to the ER and they helicoptered him up to Rockford. By the time we got up there we were met by a chaplain and we thought Josh had not made it. They said, “yes, He is okay.” So we were talking to the doctor and he gave Josh less than a ten percent chance of making it through Christmas. Well, Josh made it, but he had many trials to go through. He ended up with a trachea in order for him to breathe okay. He was in the pediatric intensive care unit (PICU) so long that the nurses got to know him very well. Josh was a very lovable little boy and they grew very attached to him. Sometimes they would even fix his hair up with dippity doo on it.
When it was time for him to be dismissed we were informed that he would need nursing care at home. So we ended up to begin with twenty-four hours of nursing care, then down to twelve and eventually down to six. They suggested that we put him into a pediatric nursing home, which broke our hearts. We checked around, but we decided no, we are going to take him home. But we had to learn how to take care of his trachea, how to suction it out and how to change the trachea. So we did and he was able to come home. But he was not the same little boy when he came home. He seemed to sleep an awful lot after that and he just was not as happy as he used to be.
Josh had several surgeries over the years. But when he had the trachea put in, when he was back in his bed, I told him this would be his last surgery. Little did I know that it would be true. I remember the overwhelming ache of love and joy I had when I held Joshua in my arms for the first time. My last memory of Josh was the overwhelming ache of loss and grief when I held him in my arms and his life slowly slipped from him.
Looking back over his life many people thought “poor thing, he cannot eat by himself, he cannot speak, he cannot sit, he cannot walk or run.” But that did not matter to Josh, he did not know any different. I know that he knew that he was loved, and I know that he loved us also.
His Dad Steve Remembers
Like most dads, I spent the better part of the waking hours at work providing for our family. That meant that evenings, after supper were our times together. Joel and I would spend some time wrestling on the family room floor or some other activity. Afterwards, it became sort of a ritual that Josh would sit on my lap and suck on a Popsicle or on a chocolate bar. His handicap prevented him from taking sufficient nourishment orally, but he loved his treats. He would smack his lips and drool all over both of us, but that was okay, because he was enjoying it. Often, Joel would join us, also on my lap, with his own treat. What more could a father ask for?
I liked to make sounds (usually like Donald duck) for Josh to laugh and smile at. If this did not always work, there was something that almost never failed to work. I would speak his name is slow drawn out way with a certain inflection in my voice and he would smile real big. But that really does not describe his smile well enough because when Josh smiled his whole face lit up. Unable to speak in words, it was his way of saying “I love you daddy.”
His cerebral palsy meant that his muscles and tendons were usually tight. This was accentuated even more if someone he did not know well was holding him. He would tense up and arch his back. But when I held him his whole body seemed to melt into total relaxation. His way of saying, “when I am in my father’s arms I have no cares in the world.”
Joshua liked to go on bike rides with us too. Since he could not ride a bike himself and because he could not support himself well enough to sit in an infant or child bike seat this took some creativity. First, we needed a bicycle built for two so Eileen could go with. Second, we needed a “rickshaw” to tow behind that Joshua could lay back in and be secured in with safety straps. But we needed a double one, because Josh did not grow very fast. When Joel was little they were like twins and we needed one that would hold both of them. When Joel got older he would ride behind in his bike with its training wheels and keep an eye on his “big” brother. Of course Joel would get tired before we got too far on our ride. So he would climb in with Josh and I would hang his bike onto the back of the rickshaw by its front wheel and tow it behind. I wonder how many near car accidents we almost caused as people drove by and turned to do a double-take. I am sure whoever may be reading this formed a mental picture of their own and had a big chuckle.
I have been known by a lot of titles over the last thirty years or so. Like, “this is Steve Brewer, our Chief Tax Officer,” or “our Chief Financial Officer, Steve Brewer, can take care of that.” But the titles I am most proud of are, “that is Steve Brewer, He is Josh and Joel Brewer’s dad.” It is not hard to imagine that when I die and go to heaven, when asked my name I will hear in reply “oh yes, you are Joshua Brewer’s dad.”
I cannot even begin to imagine what our lives would have been like if we had never had Josh. What I do know is that our lives would have been incomplete.
His Brother Joel Remembers
Love. It’s a relatively simple word in the English language, but are we as human beings truly capable of grasping the concept? We live each day distracted by technology, stressing about that next deadline at work or school, holding onto anger towards those who have done us wrong, but do we take time to show love and gratitude to those who are closest to us, or to the One who made us?
It takes a special someone to pull us out of our daily routine to stop and realize how much better life could be if we took time to show love to everyone around us. For me, that person is my brother. It’s been twenty-five years since I’ve seen his smile or heard his laugh. It gets harder and harder to remember the details of our short time together with each passing year. But I will never forget his joyful spirit.
When dad asked me to think about a memory to share in this book, it was a more difficult task than I thought it would be. How do I pick out just one? Do I share memories of playing with our new toys on Christmas morning, both of us sitting on dad’s lap eating popsicles, or mom making up stories to put us to sleep? While those are all memories I will cherish, there was a time when I was young that Josh taught me an important life lesson.
It was a sunny morning early in the school year and I was in second grade. This was a big year. Josh was coming to my elementary school as a student. I was so excited to share that time with him and show off my big brother to all my friends. Josh was in the early childhood development program at school and on his way to class. My friends and I were on our way to recess when I saw Josh being wheeled down the hallway. I ran over and gave him a big hug and introduced him to my friends. Josh had a big grin on his face and so did I.
Reflecting on that memory and many others helps me realize that love should be unconditional. Josh always had a smile on his face and a joy in his heart. He may have not have fit into society’s standards of a normal boy. He was my big brother and I loved him. The disabilities didn’t matter, we were family.
We should all love and respect each other unconditionally, without strings or judgments. I hope people who read this story can learn from Josh and his unconditional joy and love.
A Glance Behind Heaven’s Golden Door
If Only . . . In Memory Of Joshua Eric Brewer
If only you could imagine the place where Joshua roams, if only you could fathom the heaven he calls home,
If only you could envision the streets of glistening gold, if only you could feel the warmth of having God’s hand to hold,
If only you could watch him playing in God’s domain, his blond hair blowing, his blue eyes sparkling as he dances in the rain,
If only you could see him with that smile on his face, yes, if only you could imagine this beautiful gorgeous place,
If only you could tour the gardens where Joshua dwells, if only you could catch a scent of the flowers he gets to smell,
If only you knew the feeling of never feeling bad, of always being patient, and never feeling sad,
If only you could take a glance behind heavens golden doors, if only you could climb some stairs and peek up through the floor,
If only you knew how happy your blue-eyed angel is, you’d stop wishing he was in your arms and be thankful he’s in his.
I do not know the author of this poem, but it was passed along to Eileen, Joel and me from Joshua’s Uncle Bob and Aunt Connie shortly after Joshua’s death as a tribute to his life.
While it may be a bit fanciful to imagine taking a glance behind Heaven’s door, it does bring to mind images of the time that we will be reunited with Josh. Had he lived he would have been thirty-five on his next birthday. And for some of us, we are getting closer to the time that we will see him again than we are to the time we saw him last (if we are not already closer). I have thought about this on more than one occasion, and have wondered how we will recognize him when we see him again. Will he be the “age” he was when he died, an adult or ageless?
For Eileen, I think it might play out something like this. The mom who has never seen her son with her own eyes, but has imagined him countless times in her mind’s eye, will probably be the most likely to recognize him right off. There was almost a mystical connection between Eileen and Josh. So much so that in life she almost always knew when he was getting sick before his nurses or aides did. She had that sixth sense that seems so common to moms, but was accentuated by her blindness. As a result she picked up on subtle changes before anyone else. I think part of it was because she had to rely on that sixth sense more than others did. Even though we are told that there will be “a great multitude that no one could count, from every nation, tribe, people and language,” it is not hard for me to imagine Eileen, once again able to see, instantly recognizing the son she bore and cared for through so many illnesses amongst that crowd.
It might be different for Joel, who was only eight when Josh passed away. Maybe he will require more help in recognizing his brother because he was so young when he last saw him. Perhaps it will go something like this. Joshua is expecting him and is waiting his arrival. Much like Joel was waiting for Josh to return to school so many years ago. At that time Joel rushed up to give his “big” brother a hug in front of his schoolmates, wanting them all to know that the “little” boy in the wheel chair was his brother. This time maybe Josh will rush up to Joel, “his blond hair blowing, his blue eyes sparkling,” because he is no longer confined to a wheel chair. Josh wants all the angels to know that the new arrival is his kid brother.
I envision that it will go something like this for me. Maybe I see someone who I think just might be Josh. Just to be certain, I call out his name in that drawn out way (J-O-S-H-U-A?) and with that certain inflection of my voice that I always did just for him. He will flash that million dollar smile, a smile I would recognize anywhere, and I will know for sure that it is him.
But for now, memories of the past and imaginings of the future will have to do, until we are reunited once again. This is more than a future hope for those of us who are “in Christ Jesus.” It is a certainty because death could not keep Him in the grave. And because He lives, we can face a whole host of tomorrows separated from our son, brother, just like we have faced a whole host of yesterdays without him.
My Advice – Cherish your children while you have them, they are a gift from God.