March 29, 2005 was the day my life changed forever. As I sat in a cold, sterile hospital room
listening an unfamiliar doctor rattle off overwhelming information about my
daughter, my world shifted and I found myself living a new life.
January 1, 2005 started off the same as so many New
Year’s Days had before for me. I made a
few resolutions and spent the day with my family dreaming of what the new year
had in store for us. Our life was busy,
happy and not so complicated. I was
pregnant with my 5th baby, a girl, who would join our family of 6. I had 3 daughters already, ages 8, 6, and 4
along with one son age 2. We had a cute
little house and a scruffy puppy named Bingo.
I had no idea what challenges laid in front of us.
In late January my eight year old daughter, Madi, began
to experience terrible stomachaches. She
complained about her stomach and needing to use the restroom often. I used my Dr. Mom degree and decided that her
diet may be the cause and she needed to eat healthier. I increased her fruits and vegetable intake
and made sure she wasn’t eating fast food.
My modifications didn’t help. Her
pain increased and so did her restroom issues.
In early March, I took her to our pediatrician and she ordered some
blood work. No big deal or so I
thought. It was late into the evening
when I received a phone call from our doctor about the results. Several tests were extremely high, so more
lab work was ordered and I was given the name of a pediatric GI doctor with
instructions to call first thing in the morning to make an appointment.
We saw the pediatric GI on March 22, 2005. She was a small woman with wild, frizzy hair
and a strong New York accent, which is very uncommon in the Midwest. Dr. Brady was kind and compassionate while
being blunt and very honest about Madi’s test results and symptoms. We scheduled a colonoscopy for March 29. She was diagnosed with an auto immune disease
called ulcerative colitis. We were told
there wasn’t a cure, but could be managed with medicine and diet. Madi was admitted to the hospital to start
treatment. The next few weeks were a
blur learning how to cook for her, dose her medicine, manage her pain while
balancing a growing family, a rambunctious toddler, and the new reality of our
life. I spent a lot of time researching
and learning about our new enemy, ulcerative colitis.
Ulcerative colitis (UC) is an inflammation of the lining
of your large intestine. It causes pain,
diarrhea, bleeding, and also in some cases joint pain and swelling, fatigue,
and fever. Most people treat their UC
with diet and medicine and find that they have periods of remission where they
feel good and are healthy. My daughter
was never that lucky. She tried
medication after medication, and medication on top of medication. She had surgery to install a port-a-cath in
her vein to receive infusions every month and immune suppressants to try and
turn down her immune system.
Unfortunately for her, the medicine and diet modifications didn’t work
and at age 11 we received news that surgery was the only option left for her. She would have to have her entire large
intestine removed within days.
November 30, 2008 was a bitter cold winter day and was
the day her first surgery was scheduled.
My husband and I waited in the surgery waiting area for 14 hours,
receiving updates every few hours on her condition. I was broken that day. I was heartbroken that after my countless
prayers, fasting, her name on the temple prayer role, and blessings she was
given, the one thing being withheld from her was healing. On top of worry for her current and future
health, my grandfather’s funeral was held this same day. All my family support system was at a chapel
celebrating and grieving for the loss of our patriarch while I sat crying in a
hospital corner reflecting on how difficult my daughter and our family’s trials
were.
These trials haven’t gotten any easier since that dreary
winter day. In fact, in some ways they
have gotten harder. Madi continued to
need surgery after surgery, at last count she had eight surgeries to treat her
ulcerative colitis. After her last
stomach surgery, we thought we were done.
Her surgeon was confident that he had finally fixed all of the
complications and she wouldn’t need another one anytime in the near
future. We celebrated that news! We truly felt like we had finally finished
this marathon trial and we were confident and sure with the conviction that she
was finally healthy. It was a short
lived break.
One
night in 2011 I was helping Madi wash her hair in the kitchen sink. She was leaned over the sink and I was using
the sprayer to rinse the conditioner out of her long hair. I noticed a hump on the right side of her
back. This new symptom struck panic in
me. I was emotionally spent and could
not bear to watch my sweet daughter go through anything else. However, it was just a short month later that
an orthopedist delivered news of another critical diagnosis. She needed to have her entire spine fused to
correct severe kyphoscoliosis. The
emotions inside me roared. I felt angry
and betrayed, hopeless, alone, cheated, and sad. I was heartbroken to realize our marathon was
not over. Madi was going to endure more
suffering, and I needed to be there for her.
Inside my head and heart, I wrestled with these emotions. I prayed and let Heavenly Father know how
angry I was and how betrayed I felt by this new diagnosis. I was lost.
I didn’t know how or where to summon the strength and courage from to
climb this new mountain.
The
strength did come though, and we found it when we took Madi for a second
opinion with another orthopedist at St. Louis Children’s Hospital. He was an answer to our prayers. He understood Madi’s emotions and fears about
her back problems. He comforted her as
she wept in the exam room and told us he understood and would do everything in
his power to fix her back. His compassion
was what we needed to feel hopeful and brave enough to endure another surgery,
with the accompanying ICU stay, physical therapy and terribly painful healing
process. It was a big surgery, and my
husband and I spent another day waiting for news from another surgery. Her spine surgery lasted nine hours and her
recovery took months.
As
she healed and I tended to her, I realized something had changed. The situation was still the same, the pain
still sharp and recovery was still rough.
The change was inside me, as I gained an understanding of an eternal
truth. I learned of God’s love and
tender mercies in our lives. I learned
that God does give you more than you can handle because in those terrible
moments, you turn to Him. Your silent
pleadings and heartbreak aren’t ignored.
Even in the moments when grief and sadness are the only the emotions you
feel, you aren’t alone. Unanswered
prayers aren’t evidence that God has forgotten us, but an opportunity for us to
look for Him and understand His plan.
His is always right, even when it seems wrong. In the end God is always there for us, to
lift us when we are weak, to silently wipe our tears and to unconditionally
love and wait for us to turn to Him.
