Mothering the Mighty/Fathering the Ferocious
Most people think of a parent of children with disabilities, be it physical or mental, as being depressed and defeated. Believe me there are days when we are… but I am a, the glass is half full type of person, and this isn’t that type of article.
Being the parent of a child with different abilities is a blessing in disguise. Sure we may get stares of pity or judgement from strangers, kids point, and people whisper, but we can’t dwell on those things. Things like that teach us to be strong and resilient. It also gives us the opportunity to teach others about compassion, to tell them about our medical conditions, and to raise awareness.
How Do You Do it?
Often I am asked, “How do you do it?” “Don’t you wish your children were healthy?” I do it, WE do it, because we have no other choice, you do what you have to for your child. You move heaven and earth for them and by doing that you treasure each day, each moment is a gift, a legacy. I’m not saying I’m happy my children have serious medical issues, nor am I saying I would change the path we have been put on, but I realize that this is our life and even though it is difficult and ﬁlled with trials it has also been a good.
Seeing the beauty in their laughter, the tenderness of each hug and the sweetness of their spirit, is a treasure I get to have each day and never take for granted.
Then there is the gift of friendship that is bestowed upon you along the way. During our journey we have made some unlikely friends that have become our tribe. They are ﬁerce warriors and advocates for their children and others. They stand beside us when others fall away, there is a deep sense of belonging, and that is a treasure like none other. Family has been a blessing for me. Our family is very tight knit. When your family goes through life threatening trauma repeatedly, you cling to your family. We celebrate the little things, try to go out and do things as often as we can even if it’s just a stroll, or a trip to the park. Togetherness is so important, when you know that it can be taken away in the blink of an eye.
So often we are all caught up in the day to day stresses of work and school and chores and forget about the little things. Trauma has a great way of putting things into perspective and keeping them there. Children with special abilities are so wonderful! They ﬁll your heart with joy, they make you want to ﬁght for justice and ﬂip this world on its head. They have a way of making you stop and smell the roses. So next time you see someone with down syndrome, or in a wheelchair, or in a cervical collar, don’t stare, or point, maybe…just maybe smile and think about smelling the roses or trying to change this world for them a little too.
I’m a mom to two beautiful warrior girls ages 10 and 12. All three of us deal with several medical conditions. I have Chiari Malformation, EDS (Ehlers-Danlos Syndrome) and Fibromyalgia along with chronic headaches. My daughters both have Chiari and EDS. My youngest also has CRPS (complex regional pain syndrome).
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