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Jeanne Markowski
Jeanne Markowski has a “full plate” indeed. She is the mother of two sons with spina bifida—first-grader Grayson, age seven, and Gabriel, age three. “They both have different level defects and each deal with different issues because of the differences,” Markowski notes. Grayson’s lesion is L-3 and L-4, and Gabriel’s is T-12.
Markowski and her second husband are expecting a child, plus they have formed a blended family which includes her husband’s two sons, second-grader Rayden, 8, and Rayne, 10, in the fourth grade.
The baby is due in early November, and at 16 weeks Markowski plans to have the AFP [alpha fetoprotein] blood test done to rule out any neural tube defects. “This came back positive during my pregnancies with Grayson and Gabe. We are fortunate to have such testing because I was prepared with both boys, and we made sure that they had the best doctors before they arrived,” she says. “If that test comes back okay, then we will have a high-level ultrasound to rule out a milder form of spina bifida where the cords aren’t exposed.”
Speaking about how she and her husband manage their family, Markowski says, “At times it can be hectic, but we make a great team. We are a very busy family, but we are highly organized, and both of us are committed to the betterment of our boys. We want Grayson and Gabriel to grow up to be self-sufficient and responsible adults. We recently added on a handicap-accessible bathroom and two ramps onto our house. Grayson is even more independent now and can totally take baths by himself, thanks to the modifications.”
The children all interact very well together, Markowski says. “I couldn’t ask for two more accepting stepsons than mine. They have been highly accepting, and supportive and protective. We are a very open family and communicate regularly about Grayson and Gabriel’s disability. We involve Rayden and Rayne. They get the caths [catheters] for us when we need them. If someone needs a diaper change, they will inform us. They love going to the doctors’ appointments with us. I truly think my youngest stepson, Rayne, will be in the medical profession someday because of his involvement with the boys and the compassion he has learned being around them.”
Recreation
Markowski’s husband bought Grayson a John Deere rolling seat that mechanics use because the family loves to bowl and golf. “Grayson’s wheelchair was inhibiting him from being able to swing the club and also to throw the bowling ball because the wheels were getting in the way—this seat has done wonders. It has enabled him to be able to join in on the family activities. We definitely improvise when it comes to the boys because we don’t want them to miss out!”
Markowski continues, “We have attended a few spina bifida conferences, and if we can save enough money, we are hoping to go as a family to the National Conference in Orlando this year [Spina Bifida Association (SBA) and the International Federation for Spina Bifida and Hydrocephalus (IF) 36th National Conference, Orlando, Florida, June 30-July 3]. Grayson and his stepbrother will go to Kid’s Camp, which is set up especially for spina bifida kids. They have wall climbing, horseback riding, fencing, etc. My husband and I will go to the sessions, where we will learn about new medical breakthroughs and be able to mingle with other parents. The few times we have attended, we didn’t want to leave. These conferences are memories that we will never forget because these people understand what we go through on a day-to-day basis.”
Grayson is a straight-A student; his favorite subjects include art and music. “As soon as Grayson is old enough, I want to start him on either piano or guitar lessons because I feel this is something that he could thrive at,” Markowksi says.
Follow-up Care
Both boys are regularly evaluated at Arkansas Children’s Hospital in Little Rock, Markowski says. She feels fortunate that the hospital has an SB clinic. “Many states don’t offer this, and the parents have to go to numerous offices for their children’s checkups, but we just go to clinic and see all the doctors at one time.”
Both boys receive physical therapy several times a week. “Grayson can walk with his walker, and I just want to say that his therapist, Mrs. Heather, is the best! She has truly made a huge impact on his mobility, and her goal is to have him walking in his classroom next year with his walker. As of now, both boys have wheelchairs to get around.”
Helping SB Kids Attain Goals
“When I found out that we were going to have a child with SB, I told myself that I wouldn’t be overly protective and shelter the child to debilitate him further,” Markowski says. “I know both boys are going to be independent adults someday. Both will go to college, marry, and live satisfying lives. It would have been so easy to do everything for them, but that would be a disservice to them in the end. We celebrate the small things—even though it may be small for us, it isn’t for them. For example, Grayson took 30 steps in a row with his walker, and we celebrated that milestone. That was huge for him, so I suggest set small goals and celebrate them like they are big.”
Support Group Benefits
“The support group is vital for me,” Markowski says. “Talking to other parents—people who live my life—is what gets me through at times. I am so fortunate because the boys’ pediatrician recently adopted a baby girl with SB. She was actually asking me questions! I encourage all parents and persons with SB to get involved in a support group and become a member of the National Association. You will learn avenues or ideas that will make your life simpler because it isn’t an easy road at times. No one truly knows unless they live it.”
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