Betty Vertin recently wrote an article discussing her experience as a parent of a child with Duchenne muscular dystrophy. She shares the lessons she has learned in order to help others as they navigate how this disease will impact their lives and their loved one’s lives.
Duchenne Muscular Dystrophy (DMD)
Duchenne muscular dystrophy (DMD) is one of nine forms of muscular dystrophy. Patients with DMD cannot make dystrophin in their muscles causing muscle weakness, eventually resulting in heart and respiratory weaknesses and quadriplegia.
Worldwide, DMD occurs in one per 3500 male births and only one in approximately 50 million girl births.
Symptoms:
DMD symptoms usually manifest before the age of six. DMD symptoms include:
- Muscle weakness beginning in the legs, pelvis and thighs, progressing to the rest of the body
- Motor skills difficulty
- Frequent falling
- Difficulty moving positions
- Difficulty walking
- Fatigue
- Learning disabilities and low IQ
- Progression to heart disease and respiratory failure
Cause:
DMD has an inherited, X-linked recessive pattern. DMD is passed on by mothers, who are carriers of the genetic mutation that causes DMD.
Making Marriage Work with DMD
The parents of children diagnosed with DMD have a shockingly high divorce rate. This is due to issues such as financial strain (from treatment, hospital visits, etcetera), exhaustion, depression, grief, and most of all stress. These issues that parents are dealing with, individually and together, cause problems in the marriage even if they have a healthy marriage.
Vertin admits that she worried when she first heard the staggering statistic, but she and her husband made a promise to each other to keep fighting for their children and their marriage. To this day, they remain committed to each other throughout their various ups and downs.
Lessons Learned
Every parent of a child with DMD will cope differently. However, it is comforting to hear how other parents dealing with the same thing have dealt and adapted. That is why Vertin decided to share the lessons she learned, through the good times and the bad times.
The first lesson she shared was that everyone copes differently, and not to blame others if they do not react the same as you do to a situation. Everyone deals with things in their own way, and you cannot assume how they are feeling or what they are thinking just because it looks different from your own ways of expressing those thoughts and emotions.
Dealing with all the aspects of your child being diagnosed with DMD is a lot, so Vertin encourages couples to go through all of it together. This means attending appointments together as much as possible, managing prescriptions together, and learning about the disease together.
It is also important to make time for yourselves as a couple. Vertin says that although DMD can be all-consuming, it is essential that couples still take the time to have space for themselves to be a couple. This can be as simple as dinner dates if possible, watching a TV show or movie together, or simply just being together without distractions.
Being caregivers is a lot of hard work, but as a couple it is an opportunity to show love and be there for one another. According to Vertin, it creates a special bond and is one of the purest forms of love. Caregivers can be each other’s support, and they are working together to take care of someone they love.
Although being a parent of a child or children with DMD is hard, and marriage itself is hard, there are opportunities to strengthen a partnership within these times. Take time to work on your relationship and still enjoy your marriage, because it will help you both as you navigate caring for your child/children with DMD.
