One of the most common themes I hear in the Fibromyalgia
community is the difficulties of being an active parent in the lives of our
children. Because this disease causes overwhelming fatigue and debilitating
pain, those who suffer find that being active in the lives of their little ones
not only painfully difficult but sometimes impossible. While I too have made
similar complaints, I have worked hard to be there for my daughter the best I
can and to educate her about my disorder. This has made her into a more understanding
and empathetic child.
When I lay on the couch or in my bed after a massive flare
or while fighting through a migraine, it is my baby who is my constant caretaker.
She gets me towels, fresh ice packs, and keeps my water bottle full. At 5 years
old, she is an amazing little caretaker. The past 48 hours though, I have
gotten to baby my baby the way that she has taken care of me. After starting
Kindergarten on Monday she seems to have gotten a bug and spent the last 12
hours with a fever of 102F. She was born with bad hearing and after constant ear
infections when she was younger, she had surgery on both her ears when she was
only 18 months. Ever since then, with proper nutrition, exercise, and only the
top rated children’s nutritional supplement she hasn’t had any significant
health problems. Needless to say, I found it very upsetting to see my little
angel in obvious pain and misery. I wanted to cry with her.
Being the parent that I want to be to my overactive kiddo
has been a learning curve of trial and error for me. My first words of advice
to parents with Fibromyalgia are to talk to your child. While they may not
fully understand the disease you may be surprised at what they can comprehend. My
daughter can’t tell her friends that I have an invisible disease that has no
cure, but she does understand that “Mommy has booboos and she gets tired”. I
used to sit and cry because I wanted to run and play with my daughter and I truly
believed that I was going to miss my daughter’s life because I was sick. I felt
robbed. And then I realized that I needed to change the way I looked at “participating”
in her life.
My child understands that I can’t always do everything with
her physically that I want to do, but she also knows that I am going to be
there to encourage her every step of the way. I play with her when I am feeling
well, take her to the museum, play in the park, and splash at the water park –
that way when I am struggling and can’t do as much as I would like we can talk
about the fun we did have and plan our next adventure! We read together, play
games, and learn new skills when I am hurting too much to run and play. I make
sure that I am there for her regardless of how I am feeling and she knows this.
I know that it is depressing, devastating, and frustrating
to not have the same energy levels or abilities as “other parents” but my
encouragement is to not dwell on what you “can’t” do but rather focus on and
celebrate what you CAN do. You have a unique gift that will allow you to help
your child to recognize that everyone, healthy or not, has something to contribute
and should be respected regardless of their lot in life. Yes, my child is growing
up understanding the disease and it would be harder for older children to accept
right away, but I truly feel that to be open with the young ones is important.
My first contact with an adult with Fibromyalgia was when I
was only 12-14 year old and because Fibro was not well known then and we kids weren’t
told that my god-mother was fighting a sickness, I remember thinking that she
was being whiney and trying to get attention (I am so sorry – I could not have
been more wrong). I feel though, that if someone had just tried to explain to
me that it wasn’t “just in her head”, that something was making her sick, I would
have been more understanding of her situation and might have had a better
understanding when I started to experience the same problems I had seen in her.
This is also why I think that we as adults should be more open about the
disease, and the way it makes us feel, to our children. Explaining the details
of brain fog, depression, and muscle spasms might be a bit much, but letting
them know that you have a pain in your arms and it makes you sad that that you
can’t play all the fun games you want to, seems to be enough for at least young
children to start with.
Don’t let your Fibromyalgia take away all the beautiful
experiences that life with children has to offer. Find ways to enjoy their
favorite activities in a manner that won’t trigger a flare and bear in mind
that Moderation is the name of the game with Fibro. Children are a blessing.
Let them be your eyes to the simple pleasures of life and revel in your little victories
and let trivial matters be. Teach your children to be open-minded and understanding,
to see and understand the pain of others, and to be strong in the face of
adversity as these are things that they too will encounter as they grow. Our
children emulate us. We have a unique gift – use it to make them stronger.
