About five years ago, I was at a MOPS (Mother’s of Preschoolers) meeting. Shar Dluzak was the speaker. I didn’t know Shar and didn’t know her story. Thirty minutes later, when Shar finished her story, I was crying so hard that several moms around me asked if I was OK. This was before Carmen. I can’t imagine how hard I would cry now!
The Sunday after we received the shocking news that Carmen most likely had Tay Sachs, we decided to go to church, even though crawling into a hole and never coming out sounded more appealing. After the service, I went to the nursery to pick up Carmen. As I was carrying Carmen down the hall, I saw Shar. I walked up to her and mumbled something about my daughter being diagnosed with something awful and that she was going to die. I’m not even sure if Shar knew who I was at that point but she just looked at me with the most compassionate and caring expression I have ever seen and said, “Let’s pray.” Right there in the church hallway, she prayed for Carmen.
Shar and her husband, Rick, were a great source of encouragement and inspiration for us over the past few years. Rather than drown in despair with their own sorrows, they chose to minister to the broken-hearted. I can honestly say that they are the most joyful people I know.
Several years ago, Shar wrote her story and it was published in a book called Sick Kids and Those Who Love Them by Karen Rhea. I emailed Karen and asked if I could share Shar’s chapter here and she said yes.
Here is Shar’s story.
“Once Again, It’s Time To Pray.”
Mark came down with the usual childhood disease, chicken pox. Rather than a trip to the drug store for calamine lotion to relieve the itching, my husband Rick and I headed back to the National Institutes of Health (NIH) in Bethesda, Maryland, our home away from home. Mark’s rare genetic blood disease, Wiskott-Aldrich Syndrome, had proved fatal to all the boys who inherited this disease. Mark shared Wiscott with his younger brother, Matthew. Few had lived past the age of two. The boys were now in grade school. They had made it this far, yet now a common childhood disease was threatening Mark’s life. A Wiscott child had never survived chicken pox. The word went out to family and friends around the country: “Pray for Mark.”
As Mark’s body fell prey to the onslaught of chicken pox, his devastating symptoms raged. Every square inch of his body was covered in pox sores. I could not place the tip of my finger on any part of Mark’s skin that was not covered by a pox mark. He started slipping into a coma, for the pox were now internal. Transferred to intensive care, we sat vigil by Mark’s bedside. I meditated on Proverbs 3:5: Trust in the Lord with all your heart and lean not on your own understanding. I pleaded, “Lord, he’s only eight years old; he’s just a little boy. Please don’t take him; let him live. You’ve brought him so far.”
I recalled the numerous hospitalizations through Mark and Matt’s young lives. Colds turned into pneumonia. An eye infection caused a detached retina. High fevers, paralyzation, ear infections, swollen glands, bruising, bleeding, surgeries, transfusions, infections and croup kept the boys in the hospital. We were there so often that our family became well acquainted with the nurses and doctors and they knew the boys.
Reminiscing in the confines of my heart, I remembered conceiving after numerous heartbreaking, failed treatments for infertility. Our disappointments turned to joy with Mark’s birth. But it didn’t take long to realize something was wrong with my baby. Mark was fifteen months old and I was five months pregnant with Matt when Mark was diagnosed with Wiscott. My dream of a large family was fading. As I pondered our family’s future, my obstetrician felt that my ability to conceive again was virtually impossible.
So imagine my surprise a few years later when a sonogram showed that I was once again pregnant. This time, it was twins. Due to bleeding, I was admitted to NIH on full bed rest. Rick and I hardly knew anyone in Maryland. In the confines of my hospital room, my mind whirled as I tried to arrange child care for my boys. All of our extended family lived in California. We were in a real dilemma. Rick had to work, for our medical bills prior to NIH were astronomical. So we managed the best we could.
At 5:00 a.m., Rick gathered up the boys to visit me at the NIH. Mark was four and Matt was two. They climbed in bed with me, as Mark turned on the television. A few minutes later a nurse walked in my room. In a panicked search, her eyes began darting back and forth, asking where the boy’s father was. I explained that he left for work. Color drained from her face. “What? This is not acceptable!” Telling her our predicament, I announced, “I have a plan.” Someone would take the boys from 9:00 a.m. to 4:00 p.m. to the NIH playroom. This supervised facility was provided for admitted children only. Yet Mark and Matt had played there many times during their own hospital stays. They would join me for lunch in my hospital room. I assured her that Rick would take them home when he got off work. She was speechless, knowing this was the only option for our family. Our plan worked.
Research on Wiskott-Aldrich Syndrome had shown that a successful bone marrow match was the boys’ best chance for survival. The twins were fraternal. My mind whirled with excitement. I saw this as a great miracle. I said to God, “I see your plan Lord; one twin’s bone marrow will match Matt and one will match Mark and we’ll live happily ever after!”
On July 20, 1977, David and James were born. They weighed a tad over two pounds. The bone marrow transplants were never to be. David lived seven hours. James lived two.
I snapped back from my past grief to Mark’s present crisis. A doctor walked into the room to discuss his deteriorating condition. He felt Mark’s only hope for recovery was an experimental drug that had never been previously used. His life was terribly fragile, and we were ready to try anything. They began the medication. All we could do was watch and wait. Soon the pox started fading.
Mark was the first Wiskott child to ever survive chicken pox. Matthew was the second.
Rick and I petitioned God with our prayers and our faith in Jesus Christ. After years of medical setbacks, as well as undeniable miracles, Mark was called home to be with Jesus when he was 15 1/2. Matt lived another three years. We were given 13 additional years of loving our sons than the doctors had ever imagined possible.
There are times when my grief is raw. Missing my boys and reliving their trials can consume me certain times of the year. Yet joyous, very personal moments with Mark and Matt fill me with precious memories. I praise God for His word and the assurance of an eternal perspective. One day we will hear the words, “Mommy and Daddy” again when we come before our Redeemer and see our four boys, sitting at the feet of Jesus.
Sharleen Dluzak
Shar is going through her own health trials right now. Last July she contracted hepatitis. The infection resulted in a liver transplant as well as kidney, heart, digestive and breathing problems. She is still in the ICU. Will you please pray for Shar? For comfort, healing and peace.
Today began in an interesting way. M-W I am a substitute teacher, and Th & F I teach at a private preschool. The phone didn’t ring for me to sub, my husband and daughter left for work and school, and even though I usually get up, I fell back to sleep. After a series of crazy dreams, I woke up, not having seen the bedside clock, telling myself, “It’s 8:22.” I sat up, turned to the clock, and it WAS “8:22.”
Creeeeepy… I wondered then what the day would hold, and if it would be challenging or imaginative.
After my first cup of tea, I sat down at the computer and read this story. NOW I know the main purpose for why I am home – Shar. If I had gone off to sub, I wouldn’t have opened your site yet. I shall focus my day in prayer for HER!
Lana, I will be praying for Shar. Very much.
Wow! What a story of heartbreak turned to encouragement for the hurting. While my heart breaks for what she/they went through such heartbreaking circumstances, I am grateful to our God of Love, that she accepted the healing love God reached out with and uses her pain to touch others who are hurting. I will most definitely pray for her right now. May God touch her body and lead and guide the hands of all her caregivers. May God give her the same peace and hope she has evidently given so many others.
Something told me to read your blog today, Lana and that only could have been the lord. I will be praying for you and Shar. She is obviously, very strong and loving, as I know you and Dave are even though we haven’t met. TOGETHER WE WILL FIND A CURE FOR THAT TAY-SACHS.
Lana, I am thankful that God has given you the opportunity to know such an incredible person and I ask for God’s all-sufficient grace for her. May these ashes of sickness be turned to beauty.
Thank you, Lana, for sharing this with us. The teaching is so profoundly True. As I’ve learned from an Amish neighbor of mine recently, Praise God that we are only passing through here, heading Home. I am in prayer for Shar and Rick, and the caregivers and anyone connected to them, as well. Praise The Lord!!!!
Thank you so much for sharing that…Trust the Lord and praise him, always
As I stand in my kitchen choking back tears, I muttered a prayer for Shar and her husband. Thank you for sharing their story.
Thank you lana for sharing this story. I stand in amazement as to the strength that G-d has
given Shar and Rick.
Shar, I hope that you will be out of ICU and on your way to recovering very soon. I will keep you in
my thoughts and prayers.
How terribly sad!! What gracious, loving parents. ….and Yes I will say a prayer for Shar. Thanks for sharing her story!
Any news on her condition?
Hi Sandi, I received an update a few days ago. Continued prayer needed for all the infections in her body, blood loss, that she will regain the use of her right hand, that her kidneys will keep the fluid off her body and that her body will continue accepting the new liver.
I will keep praying!
Any news on Shar? I’ve been praying!!!
Please pray and lift Rick up as Shar has passed on Tues @12:40 am 7/19/11. She has gone to see Jesus and her boys.
Hi Gerard. Many here and around the world have been and continue to pray for Rick. We can’t imagine the suffering he is working through right now. Are you a relative?
For reference, here is a post Lana wrote yesterday morning after finding out about Shar’s passing. http://www.beautifulcanvas.org/2011/07/a-great-reunion-today-shar-dluzak/
Hi Dave,
I am one of Rick’s brothers. Thanks for all your prayers for Rick.