This week has been particularly challenging. Monday was fine. However, on Tuesday things got turned upside down a bit. Our Little Fighter went to the pediatrician to get some routine immunizations. When I came home from work on Tuesday, he was pretty lethargic and was quite warm.
After feeding him a bottle around 5:30, he turned an ashen gray and started having trouble breathing. Amanda rushed out the door with him and took him to the ER. I followed soon after. Thankfully, my mom was at our house so she could watch Baby Boy.
It was difficult to watch all of the poking and prodding being done to Our Little Fighter, as they began to run tests on him in the ER. I was wishing I could take his place with all of the needle pokes to his tiny body. I now can empathize with my parents who spent countless hours with me in the hospital when I was younger. It is frightening when something is happening over which you have no control.
Once all of the testing was done, acute respiratory distress was the diagnosis. However, we have no idea why it happened. Children born with trisomy 18 can have respiratory problems that can lead to sudden death. Therefore, Our Little Fighter was sent to OSF Children’s Hospital in Peoria for observation on Tuesday night. Fortunately, he was able to come home on Wednesday evening. However, we still don’t have any real answers.
Yesterday, he did fine here at home. Today, he seems to be doing better still. However, there is now always going to be a question as to if and when he will stop breathing again. Pray for peace of mind for all of us.
I am scared. Life is full of ups and downs. One moment things seem to be fine. Then the next everything changes. In these moments writing has always been very therapeutic for me. Therefore, I am going to let my fingers do the talking today.
As I mentioned in an earlier post, Amanda and I have taken in a new foster child. This baby was born with the mosaic form of trisomy 18, which means some of his cells have three copies of chromosome 18 while other cells have two copies of chromosome 18. This defect in the cells can lead to a host of developmental problems. No one really knows precisely in which cells the chromosomal abnormalities are present.
Currently, Our Little Fighter’s only visible issue is a cleft lip, which makes feeding a little more difficult. His breathing is also a bit labored. However, he sleeps, poops, and pees just like any other baby. What scares me is that the prognosis for babies born with trisomy 18 is very poor. Only between 10-15% of children with this condition live past their first birthday.
Life has thrown a lot at us since December of 2019. That is when we first became foster parents. Shortly after that the world seemed to come to a standstill due to the COVID-19 pandemic. Through this period my work life has changed a lot. The office where I work has lost two employees to retirement. One transferred to another office. Three others left to pursue other careers. Then, this past Tuesday I found out the manager of my office opted for early retirement and was gone the same day. Needless to say, there is a lot of uncertainty in life at the moment.
I wish I could say I knew how to deal with all of this better. Fortunately, Amanda and I have great support from family and friends. However, the uncertainty remains. We have had our first foster child for over 2.5 years now. To us he is our’s. I love him like I never knew that I could. He is still a ward of the state officially, which scares me more than anything else. Any day he could leave us and be given back to his birth parents.
I have to put all of this in God’s hands. Mine are not big enough to carry this load. He is faithful and just. My head says to trust Him and His will. However, my flesh is so very weak. My middle name is Thomas for good reason. I am filled with doubt on a daily basis.
There is an old spiritual song that has been covered by musicians across several genres of music. I believe I first became aware of the song via a recording done by Mississippi John Hurt, a blues musician who passed away in the mid 1960’s. The song is about laying down the hardships of life now and focusing on the good that is yet to come, especially in a spiritual sense.
This is something I still struggle with on a daily basis. Just when I go to “lay my burden down” I pick it right back up again. Hopefully, one of these days I’ll truly realize my hands are not big enough and I’ll “lay all of my my burdens down.” I do believe better days are ahead.
Amanda and I will have been married ten years in August. I feel blessed to call her my wife for so many reasons. She is such a caring person who has taught me a lot about life. Perhaps, the most important thing I have learned is to love those who are broken.
I was born with spina bifida, which has left my body broken. Despite this Amanda loves me unconditionally. Through this I have learned to see beauty in brokeness. Amanda has an ability to see the potential in things that I would just toss aside. This has often led me to dip my toes in waters I would never have dared if left to my own devices. For instance, approximately five years ago we entered the world of foster care.
Amanda and I began our foster care journey by taking classes to become licensed foster parents. At this point I was very apprehensive. Having worked with troubled teens as a school counselor, I was unsure I wanted to open our home to children who were considered “broken” in some way. However, I learned that leaving my comfort zone was not a bad thing at all. I am so fortunate that I did, otherwise, I would have missed a wonderful opportunity.
When we decided to open our home to foster children we were told to not expect a baby. However, the first child that came to us was a three-day-old baby boy. He since has become our world. I never expected to love a foster child as much as I do Baby Boy. Even though he is not our flesh and blood, he is our’s nonetheless. I could not imagine life without him now.
When I was born my parents were not sure how long I’d live, or what quality of life I’d have. They simply brought me home, loved me, and raised me as best as they knew how. They, like Amanda, were willing to see past my brokeness and love me.
Two weeks ago Amanda and I were contacted and asked if we would be willing to take in another foster child. This time it is a six-week-old boy, who was born with Trisomy 18 or Edwards Syndrome. In short, this is a disorder that causes a disruption in the normal pattern of development. These abnormalities are often life-threatening even before the baby is born. Likewise, they severely limit the lifespan of those with this syndrome. We don’t know how long this child will live. However, this is a life that needs love. This “broken” baby needs a home where he will be showered with love. With much thought and prayer we have decided to open our hearts to this new life.
No one knows what will happen. However, we have love to give to this baby. We also have the love and support of family and friends. Whatever happens we have assurance from God that this is His plan for us and for this child. Once again we step outside of our comfort zone. However, we know that love can overcome brokeness.
One thing that God has taught me time and time again is that where He leads His grace provides. God’s grace is always sufficient.
God usually teaches me humility in humorus ways. My latest lesson has involved showering. If you have been keeping up with my blog, you’ll know that I am currently undergoing treatment at home for a bone infection that I got through a wound in my foot.
I currently have an intravenous line in my right arm, through which Amanda administers antibiotics every morning. I also have a bandage on my foot that Amanda changes every other day. I am lucky to have such a loving wife that is willing to do this for me. However, she does like to have fun with me as well.
For instance, in order to shower I need to duct tape garbage bags around my right arm and left foot. This is to keep my foot dressing dry, as well as my IV line. The duct tape that Amanda chose for me has ladybugs on it, which look great with the black garbage bags. Once I am all suited up I look like the “Ladybug Trash Bag Monster.” I then “climb” into our shower, which is the size of a small phone booth. It is fortunate that my shower chair even fits in there.
Getting out of the shower takes a leap of faith, as I am never quite sure how I am going to stick the landing. This morning I gave myself a 9.0, as I did not fall. I also maintained pretty good form through the dismount from the shower chair.
After I am out of the shower comes the fun part, the removal of the bags. This involves ripping strips of hair off of my legs, and some hair from my right armpit. I am beginning to think I should just wax myself down. That way the agony of the tape removal would be lessened. In addition, I’d probably become more aerodynamic as I race through the house in my wheelchair.
Yes, I choose to laugh at these times. If I didn’t life would be a daily struggle. However, I know that God is there. Likewise, I know He sees my struggles. He uses these to keep me humble. I am often frustrated, but I take comfort in knowing God has never taken His hand off of my life. My duck tape with the ladybugs and those black trash bags are reminders that God has a sense of humor. He continues to care for me even when I fail Him.
I love blues music, especially the style that originated in the Mississippi Delta region of the United States in the 1920’s and 1930’s. This music is about life, especially the hardships experienced by those who invented this musical form. Robert Johnson was perhaps the best musician to emerge from the Mississippi Delta in the 1930’s. Despite the fact that he recorded only 29 songs, he is considered to be the master of the Delta blues. Several of his recordings have a haunting quality, especially those where he sings about selling his soul to the devil for his musical prowess.
The legend has it that he met the devil late one night where Highways 49 and 61 cross each other in the town of Clarksdale, Mississippi. It was at these crossroads where Johnson made a pact with the devil to become a master of his craft. This is a story that has been passed down through the years. No one knows for sure if he truly sold his soul to the devil for his musical abilities. However, it does add a mystique to his songs.
Upon a close listen to his recordings, Robert appears to play both lead and rhythm guitar at the same time. This is one thing that makes these songs truly great. He was virtually a one-man show on the guitar. Robert died at the age of 27 under mysterious circumstances, but he left behind a legacy that would influence other musicians that came after him. There are some spiritual truths in his music that are quite profound if you truly listen.
The Delta blues eventually made its way north to cities such as Chicago, Detroit, and Boston. This occurred during the 1940’s and 1950’s, as poor, black sharecroppers moved to the industrial centers of the north to find jobs in factories. Shortly after travelling north, the Delta blues became electrified by the likes of Muddy Waters, Howlin’ Wolf, John Lee Hooker, and various other musicians. It is this style of electrified blues that gave birth to rock and roll in the 1950’s.
Perhaps what I like best about the blues is the honesty of it. Life can indeed be difficult, but we can all find ways to rise above. To me this music also has a very spiritual quality to it. It is music that speaks of sin, despair, and oftentimes redemption. Despite the themes of the blues, it is often uplifting. I think that is because much of speaks to the soul of a person. In the most difficult of circumstances there is always a light that shines through the darkness.
Life is indeed difficult at times. We have all been dealt different challenges. However, we can rise above those difficulties. Music is one thing that really speaks to my soul and helps me to rise to the various challenges I have faced in life.
If you have been a regular reader of this blog, you know that I often find myself in the hospital. In fact, as I write this I am laying in yet another hospital bed waiting to be discharged.
I had my gallbladder removed yesterday, as there was no longer any blood flow to it. This is due to the fact that I had three, fairly large gallstones which had formed. These stones blocked the normal functioning of the gallbladder and it shut down.
This is just another curveball that life has thrown my way. However, I have learned to hit the curveballs head on as they come. My faith plays a large part in this, despite the fact that it is often hard to have faith when things go wrong. Ultimately, I know God has a plan and it is my responsibility to look to Him for guidance.
One of my favorite blues muscians is Muddy Waters. As noted above, he is one of those who brought the Delta blues north. A well known song of his is “Rollin’ Stone.” This title was taken from the old proverb which says that a “rolling stone gathers no moss.” I think this means we must all remain active or we will go stagnant.
I certainly have gone stagnant in many areas of my life. For instance, I used to be a fairly healthy person. However, over the last few years I have become someone who has neglected my health. I have eaten poorly and have put on weight. This weight is not healthy for several reasons, especially due to my spina bifida, as it adds extra stress on my hips and legs.
My poor diet is something that I am sure contributed to the problems that I have had with my gallbladder. I plan to learn from this experience and once again become a “Rollin Stone.” My body can’t handle the moss that has gathered on it. If you are a praying person, please pray for strength for me to keep rolling. My gallstones have motivated me to become a “Rollin Stone.”
For today’s post I asked my mother to contribute a story in which she gives her perspective on raising a child with spina bifida. What follows is her story.
“Behold, children are a heritage from the Lord, The fruit of the womb is a reward.” (Psalm 127:3 NKJ)
On March 13,1977 the Lord blessed my husband Tom and me with our third son, Ryan Thomas Bradshaw. Little did we know on thenight that he was born that our family’s life would be changed forever. Ryan’s birth and the years that have followedhave taken us on an amazing but sometimes perplexing journey. Through it all we have been there for eachother with God as our guide.
A week or so before Ryan was born I told my mother that I just felt that something was wrong with the baby I was carrying. Her response was, “Oh, you’re just tired of being pregnant.” That was true, but I still felt uneasy. Because my second son had been born so quickly they told me when I went into labor with this third child I should not waste any time getting to the hospital. So, when labor started early in the morning on March 13 we took our 4 and 5 year old sons to their aunt and uncle’s and headed to the hospital.
I labored all day and around 5:00 PM the doctor told me we should consider a Cesarean Section as the baby was beginning to show signs of stress on the monitors. Almost immediately my labor became very intense and the baby started crowning. Forceps were used during delivery and as Ryan came through the birth canal, however, the myelomeningocele that had developed on his back ruptured during the delivery. So, Ryan and my husband were rushed 130 miles away by ambulance to Children’s Memorial Hospital in Chicago. So, my feeling that there was something wrong with my baby was true.
We had so much to learn over the next few months regarding what was in store for Ryan and our family. Because Ryan has already written about his birth defect I will not. As I mentioned at the beginning of this piece, life in this family has been an adventure. The growing up years were not always pleasant for my boys but a good sense of humor helped in many situations. You may wonder how our family stayed intact with two other boys to care for, jobs and a home to maintain.
I believe there are three things that contributed to maintaining a “healthy” family unit. First, and foremost, knowing that God is in control no matter what happens. The Lord has answered many prayers on Ryan’s behalf and for the rest of us. Then, we had strong support from extended family and friends that made all the traveling and overnight hospital trips possible. Last but not least, as has been said many times; love conquers all.
My life is but a weaving between my God and me. I cannot choose the colors He weaveth steadily Oft' times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not 'til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. - Corrie Ten Boom
I believe in the providence of God because of one place. That place was Children’s Memorial Hospital
in Chicago, Illinois. On March 13, 1977
I was born with spina bifida and hydrocephalus, two conditions that would lead
me to spend several weeks at a time at Children’s when I was a young boy. I was born in a small town called Sterling,
Illinois, which is just a couple hours west of Chicago. Soon after my birth I was rushed by ambulance
to Children’s Memorial. From this point,
into my early teens, Children’s was often my home away from home.
I learned a lot about life during my stays at Children’s I began to see life from a different
perspective. From an early age I saw how
joyous life can be. I also caught
glimpses of just how tragic it can be as well.
For instance, I met a boy there during one of my stays whose mother had
set him on fire. This boy’s name was
David. He and I became friends while we
both were staying at Children’s.
David was there getting treatment for his burns. I was there being treated for a case of osteomyelitis,
which is an infection of the bone. David
used to push me around the floor of the hospital where we both were staying. He and I would talk about the things kids our
age typically talk about. However, there
were also serious conversations. It was
through one of these more serious talks that I learned just how difficult David’s
home life was for him. His mother was a
drug addict, who set him on fire one night when she was in a drug-fueled rage.
Despite his circumstances, David was a very empathetic
person, who seemed very kind to others. He
certainly treated me well and we enjoyed spending time strolling the halls of “three-west.” This was one of the best floors to be on if
you were staying at Children’s because the nurses were so much fun. One such nurse was named Augie. She was a very kind and loving woman.
One afternoon I was given permission by one of my doctors to
leave the hospital for a few hours.
Augie, my mother and I, then went to the Lincoln Park Zoo, which was several
blocks away from Children’s. It was an
afternoon that I will never forget. I had
been in the hospital for several weeks, and it was such a joyful experience to
get out into the fresh air and soak in the sights and sounds of the zoo. Plus, it was fun spending time with Augie, as
she loved to laugh. It was an afternoon
where I was allowed to forget about things and just relax.
Many of the doctors and nurses at Children’s were so kind. They were people who truly knew how to care
for children. I had the privilege of
meeting individuals from all walks of life while I was at Children’s. My orthopedic doctor, Luciano Dias, was from
Brazil and was fluent in both English and Portuguese. My urologist was a short, Jewish man named
William Kaplan. I can say he is the
first doctor that invited me in to his house only to have me urinate in the
entryway. However, that is a story for
My favorite doctor of all was my neurologist, Dr. David McLone. He was such a kind and gentle man. He was one of the first doctors to treat me
when I arrived at Children’s shortly after my birth. Dr. McLone was the one who told my parents to
take me home and love and treat me as they would any other child. I believe it was this advice that has led me
to not look at myself as someone who has a disability.
You might ask what does all of this have to do with the
providence of God. When I was born in
1977, not much was known about spina bifida and hydrocephalus. However, all three of the doctors that I
mentioned above were physicians who were on the forefront in the treatment of spina
bifida at this time.
For instance, Dr. Dias was a pioneer in some of the surgical
procedures that have allowed me to walk.
In fact, the picture of me that appears on the very first post of this
blog is from a medical journal that details information about a procedure that
Dr. Dias performed on me that straightened my legs, enabling me to walk.
As noted above, I was born in a small town, which was just a two-hour drive from Children’s Memorial Hospital. In 1977, Children’s was one of the leading centers in spina bifida research. I was cared for by some of the leading doctors in the treatment of spina bifida. I also had parents who sacrificed their time, finances, and energy to insure that I received the best care possible. For the first year of my life, my parents drove me to and from Chicago each week. There is no way this all happened by just a stroke of luck. Children’s Memorial Hospital is no longer there on Fullerton Avenue in Chicago. However, it will always be a part of me. Likewise, it will always be a reminder of the providence of God.
“The most luxurious possession, the richest treasure anybody has, is his personal dignity” – Jackie Robinson
I understand the sentiment behind the words “you are an inspiration.” I have had many people tell me this throughout my life. I know that oftentimes these words are spoken out of sincerity. I can appreciate this. However, being called an “inspiration” is something that I have not, nor will I ever accept as a compliment. For you see, these words make me feel less than human. Having a physical disability does make me different, however, it does not make me any less human.
These feelings are ones that I have struggled with for a very long time. Many times I have asked God why he created me with a physical disability. There have even been instances where I have been furious with Him for placing me into a body that doesn’t work the way that it should. It is frustrating to deal with these limitations. I can honestly say I still question God as to why He chose me to live a life locked inside a body that is far from perfect.
One answer that He has given me along the way comes from a passage of Scripture. In verse three of the ninth chapter of John, Jesus heals a man that was born blind. His disciples then question Him as to why the man had been born blind. Jesus answers them by saying it was so the “works of God might be displayed” in this man’s life (John 9:3, New International Version). Perhaps, I too was born with a disability so that the works of God could be seen through me. God has blessed me with many things and for that I am thankful. In spite of my challenges I have a good life.
In conclusion, I feel as if people look to me as an inspiration for doing things that come naturally to any able-bodied person. Sure, there are things that are more difficult for me to do, however, I have learned to adapt to my surroundings. I should not be looked upon as an inspiration for doing what what is mundane. People are not given gold medals for taking out the trash, going to work, mowing the lawn, doing the dishes, or shoveling snow. My life is not heroic and I do not expect any accolades for living it. I am just Ryan, an often surly, 41 year old man who appreciates the things that he has been given.