Special Needs Families, Part III

I was recently introduced to an online support group, the “CF Mamas,” by a friend who has a beautiful six year old daughter who is living with cystic fibrosis (CF). 

I have known my friend for several years and have watched her struggle to provide the care her child needs, be a good wife, and balance a career as a nurse.  I watched her carry their second child, another beautiful little girl, reassured after long months of waiting that this little one did not have cystic fibrosis.

My friend doesn’t complain about the endless responsibilities she faces every day to keep her daughter healthy.  She doesn’t complain about the time she can’t spend with her husband, family or friends.  She doesn’t complain that her beloved career has been put on a back burner.  She is devoted to her family of four.

She struggles at times with a school system that opposes her requests for basic hygiene between kindergarten classes.  She vents her anger at the walls of resistance she must climb to get answers at times from health care providers.  She voices frustration at the lack of support she must cope with from her siblings.  She shares her anguish that pharmaceutical companies do not consider cystic fibrosis an important-enough disease for research and development of life-saving drugs because of the “small numbers” affected.  Parents of these children have been doing their own fundraising with the support of the Cystic Fibrosis Foundation for research and support.  They recently received a huge helping hand from the Bill and Melinda Gates Foundation to advance their goal of a cure.

I had believed that most parents with CF kids had similar stories and struggles.  I was unprepared for some of the stories they shared on the “CF Mamas” network:  mothers with several children with CF, single mothers carrying the burden alone, mothers of children not afflicted with other birth defects in addition to CF.  They were open about their experiences, their struggles, their sorrows and their joys.  They were deeply supportive of each other; finding humor and small rays of hope in their demanding days. 

I asked this question of these gracious women:  “Will you share one piece of advice that you would give a new parent of a child with cystic fibrosis?”

  

• “Let them live. Let them be normal kids who have to keep up on meds and treatments to keep themselves healthy. Let them play outside, run with their friends, tackle the cats, throw a snowball.”
• “Let them do as much as possible without being held back. Even though she has to do her treatments and take a lot of medicine she can still play and do the same things as other kids. The harder she plays the better it is for her. Keep them as active as possible. Love them and encourage them everyday to do their best and to reach for whatever dreams they have.”

• The child has a disease, they are not a ‘diseased’ child.  Trust your gut, and make sure you kiddo KNOWS that you love them and they are NOT a burden to you. Fight CF with everything you have; doing treatments, giving meds, but appreciate the amazing gift you have been given.”
• “My biggest advice is don't let others criticism of how you decide to deal with the illness influence you, it is a difficult disease to understand -- what is and is not healthy for a CF child...so until they've sat in that room with you and gotten that news of a diagnosis of CF and all the care that goes with it...let their criticism roll of your back.  Do what you know is right, do what you as the parent feels is right.”

I want to thank these mothers for taking precious time to share these wise words.  These same questions could be asked of any group of parents of a special needs child and I am reasonably sure their responses would be very similar.

As a nurse and caregiver, I would offer this advice to parents of special needs kids; as soon as a diagnosis is made, begin the process of learning.  Learn all you can about the disease you and your child will be facing.  Seek the advice of your own doctor and also of the medical experts at the closest children’s teaching hospital.  Ask for the assistance of the social worker at the facility: what special equipment will you need? what in-home assistance is available? what financial help is obtainable?  Write down your questions, take someone with you to listen, record what is said, and ask for any literature they have.  Contact the national foundation for the diagnosed disease and discover where the nearest local support group is.  Go online; the internet has become an invaluable source of information and support.  Develop your own team of caregivers for you and your child; while your supporters may not be able to fill your shoes on all the tasks required, teach them what would help you most, ask them for what you need and accept what they can offer.