It was 1986, an early and cold January morning in Indianapolis. I was excited and ready to go to the hospital to have our second baby! In anticipation of the birth we’d taken our 4 year old, Michelle, over to my mom’s house the night before. So off to the hospital we went with my suitcase, purse, 35mm camera, 2 rolls of film, and a heart full of excitement. On the way to the hospital I nervously loaded my camera with a roll of film. Three days later I discovered I’d loaded it wrong and didn’t get the first 36 pictures I thought we’d taken, but that was just the tip of the iceberg.
Mom met us at the hospital with Michelle to sit with us in the labor/delivery room. Having family in the labor/delivery room was new to us so when the doctor suggested it, I thought that’d be pretty cool. It was nice to have the people I loved the most right there next to me.
We didn’t know for sure if we were having a boy or a girl. I’d had two sonograms while I was pregnant but the quality of sonograms wasn’t like the quality we have today. They told us in the first sonogram that we were having a girl and in the second sonogram that we were having a boy. We figured the second one was the right one since it was the latest, so we were looking forward to having a new baby boy!
A little over three hours later the doctor said, “It’s a girl!” So much for that second sonogram! Ha! But having another girl meant we didn’t have to buy baby boy clothes. Besides, baby girl clothes are so much cuter than baby boy clothes (at least back then) and we already had plenty of baby girl clothes! After only a few moments of holding her they took her to the warming table. They wrapped her tight in a receiving blanket and I got to hold her again before they took her off the the nursery. She was a beautiful baby; I loved her immediately.
After a short time in recovery I was taken to my room and I was just about to doze off to sleep when the doctor came in. He had a team of doctors with him so I was a little surprised at that. He then proceeded to tell me that our daughter was born with Spina Bifida, actually a lipomyelomeningocele, which is a golf ball size fatty tumor that’s attached to her spinal cord. He further explained that she’d probably have difficulty walking, problems with her bladder and that she’ll need surgery soon, and maybe several surgeries down the road. I didn’t really grasp all that he was telling me; it was a lot to absorb.
Then, later that very day, I got a phone call on the hospital room phone from the doctors office where I’d taken my mom earlier in the month. She told me that all the test results were in and that based on the tests the doctor was diagnosing her with Alzheimer’s Disease, and that it was incurable.
In a matter of a few hours, my world had been turned upside down. From the excitement of giving birth to the fear of what the future held for my newborn daughter and my mom. I laid awake all night, crying and praying. By the second night in the hospital, I still couldn’t sleep and I began to hallucinate; it was too much to handle, between the hormones, my newborn, my mom, and at this point I hadn’t slept for going on nearly 36 hours. I cried out for God to give me peace and for the nurse to give me something to help me fall asleep.
I recognized that I needed help; I needed God’s help; I needed the prayers of God’s people.
“Bear one another’s burdens, and thereby fulfill the law Christ.” Galatians 6:2
I reached out to God in prayer and then I began asking different groups to pray for my daughter and my mom. Up until this time in my life, I don’t recall sharing prayer requests with others. It was hard for me to share my prayer requests. My daughter and mom were so precious to me; I didn’t want people to think less of them or think that they were less than perfect, and I loved them so much. I knew that the power of prayer doesn’t come from the number of people praying, it comes from the Holy Spirit, but I knew I needed help so I was willing to risk being vulnerable.
“Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.” James 5:16
The next few years were filled with hospital and doctor visits, surgeries and clinics for our little girl and at the same time, my mother faded away ever-so-slowly into the ravages of Alzheimer’s Disease. I was glad my mom got to come stay with and near us for extended periods of time when she was in the early to mid stages of the disease. Her sweet and gentle spirit was still with her during these stages.
Through these years I learned that it was in the days of burden and prayer for my daughter and my mom that I drew closer to God. He drew me from my independence to be more dependent on Him. I was a very independent person and God knew I needed to change.
“He uses difficulty to strengthen and correct believers and eventually as a tool in achieving His plan.” Charles Stanley
My mom passed away in 1998 after suffering from Alzheimer’s Disease for several years. It was hard to see her fade away to the point that she didn’t know who I was and had lost the ability to walk and talk. Her personality gone, long before her passing, made me miss my mom even while she was still alive. When it came time for her passing, it was hard to let her go, even though I knew she was going to be much better off and be with Jesus. I loved her so much. But I thank God for helping me get through those difficult days and I thank all those who prayed for us during that time.
In our daughter’s early years, it seemed like everything was going to work out ok for her. We had a lot of support, a lot of good doctors and clinics, and many of her teachers would tell me what a great attitude she had. But the overall reality is that she has had a difficult life with Spina Bifida; it takes it’s toll both physically and emotionally. Little did I realize how difficult her life would be as they wheeled her off to her first neurosurgery when she was barely a month old. I’ll never forget how, after that first surgery, her face was pale and shiny like a China doll as she laid on the hospital bed motionless. I thought for an instant that she didn’t make it; my heart stood still, but then the doctor assured us she was ok. She had a second and third neurosurgery at age 4, a fourth neurosurgery at age 5, and a fifth neurosurgery at age 16. And this was in addition to numerous clinic visits, tests, bladder procedures, physical therapy, feet surgeries and castings over the span of much of her childhood and teen years.
I’m thankful for all the prayers for her over the years, and actually would appreciate your prayers for her still today. As an adult with Spina Bifida she wears legs braces to walk but gets around nowadays mostly by wheelchair. She also has chronic back pain, chronic bladder and kidney infections, and various other related medical issues. Everyday simple things that most people take for granted, like walking, bathing, house cleaning, grocery shopping, etc., all are daily challenges for her. On top of all of this, and by the grace of God, she is also the mother of two beautiful children.
While we all may wonder why God allows things like birth defects, disease and suffering here on earth, I know there are some things that we may not know the answer to until we get to heaven. We all suffer at times, and some some more than others. The who and the why are epic questions for a lot of us, but I do know this: He has a plan and a purpose for everything in our life and I have learned that He wants us to pray and trust Him no matter what.
“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”
1 Thessalonians 5:16-18
While paying for gas in Florida earlier this year I noticed a sign by the register,
“Have you played today?”
It was the state of Florida’s friendly reminder to buy lottery tickets. The lady ahead of me in line apparently didn’t need the reminder. I think she was there just to buy lottery tickets, so much so that it took what seemed like forever before she finished; 10 of this one, 15 of this one, etc. All the while she and the girl at the register laughed and talked about all the things they’d do with the winnings. Then this thought crossed my mind: what if the letter “l” was changed to an “r”,
“Have you prayed today?”
I thought, what a difference that would make in people’s lives. What a difference it’s made in mine.
Men ought always to pray. Luke 18:1