Thursday, August 25, 2011

Thankful Thursday

Today, and every single day, I am eternally thankful for the amazing "family" I have among other parents to children who have a diagnosis of hydranencephaly, or other similarly debilitating conditions. Being a parent to a child with special needs can be an isolating situation in itself, throw in a whole host of medical fragilities requiring you to stay home with your child and the isolation engulfs you. You're excluded from play groups, PTA, volunteering at school, birthday parties, and oftentimes the entire "real" world. 

Finding a support group is essential, not only for guidance and advice, but for the ability to lean on these individuals who just "get it" without you having to explain it. Let's face it, even when we try to explain it, no one ever gets it unless they are living it themselves...

One of my most favorite books is called, "Changed by a Child: Companion Notes for Parents of a Child with a Disability" by Barbara Gill. I pull it out and read it over and over again, as a reminder of being thankful for what I have. Today, as I remember how thankful I am to have the Hydranencephaly Family-to-Family Resource Network, this "note" spoke to me:


Often others seem to feel a special responsibility to puncture our hopes. They say things like "You know she will never learn to read," or "you need to accept that he doesn't know what is going on around him, " or "He's doing well now, but he will reach a plateau."

They would say we are in denial, that our dreams are "false hopes," from which we must be protected. God forbid anyone should go around entertaining false hopes! But, in a certain sense, what other kind of hope is there?

Hope is the thing that is willing to take a chance on the future. And who is audacious enough to say what the future will bring? Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn't' face, then hope has done it's job.

There is a worse thing than false hope. It is no hope at all.

The isolation from the "real" world that I speak of is actually a blessing and a curse, blessing to be embraced by those who live on hope while a curse that it is a difficult place to find yourself in. It's very challenging to remain optimistic and hopeful when you are nearly constantly reminded of all the reasons you should give up on hope... even when it's not thrown right in your face by a loved one or acquaintance, it's everywhere you look when your child is less than "typical". 

Find a support group and lean on them, they'll be your "family" when the rest of the world just doesn't get it.

"A friend is one with whom you are comfortable, to whom you are loyal, through whom you are blessed, and for whom you are grateful."

~William Arthur Ward

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