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Friday, December 30, 2011

A Day In The Life

Pack the bag for the road trip.
Get up early, and cry as your baby cries because you can't nurse him.
Try to give him water from a sippy cup when all he wants is to cuddle up next to you and go back to sleep.
Get on the road and make small talk because both of you are scared, and mindless chatter makes the time pass more easily.
Follow a nurse to the room that will start everything, and absently clutch your baby a little closer to your chest just in case someone tries to take him before you're ready.
Go through his awful medical history AGAIN.
Discuss how "routine" this will be, while simultaneously reading the list of possible risks that "never happen."
Marvel at your baby's disinterest in the IV being placed in his arm, and smile politely at the nurse who compliments him on being such  "good boy" and all you can think is  he's been through so much that puncturing his skin with a needle is nothing.
Hold him while they administer the medication that puts him into an instant state of deep sleep.
Hand him over to a stranger (and hope, silently that for just these two hours that this person could love your baby as much as you do.)
Walk. Out. Of. The. Room. And immediately understand the saying, "the decision to have a child is to accept that your heart will forever walk around outside your body."
Go to a waiting room and pretend that you are interested in the magazines or the latest internet story.
Pace back and forth and back and forth and back and forth.
Steal glances at your spouse every once in awhile and catch him doing the same thing.
FINALLY the pager buzzes and you get to go back...

But WAIT!  What does "back" mean?  What are we going "back" to?
Sure it was a "routine" test, we don't know the meaning of that word anymore.
We know what it's like to watch your baby slip away from you.
What if after I make the walk down this endless hallway, the baby I see is not mine?
What if he doesn't make the scrunchy face anymore?  What if he doesn't remember our games we play?
What if something went wrong...again?
But, no, this is crazy.  It's a ROUTINE test.  You're making it all up in your head.  But, wait...you look at your husband and see your fears mirrored in his eyes.
Deep breath...there he is...and there's that SMILE.  
It's MY baby.  HIS eyes, HIS smile, HIS reach for Mommy.
Thank you, Thank you, Thank you!!!
Hold him to your chest and realize how very lucky you are in that moment.
And that moment is all we need, because it's all we will ever have.

Friday, December 2, 2011

Special Needs Family

What do you do when your world turns upside down?  When one morning you wake up and realize that black is white and stop means go? How are you supposed to feel in that moment when you learn that sometimes things don't go just as you planned?  That dreams change, and lives shift.  That finding out you are pregnant doesn't  mean that you get to have a baby.  That having a child may not always mean what you think it does. 

We have this preconceived idea of what parenthood should look like without even thinking about it.  Life can be so obliviously happy and carefree when we get to assume certain things.  For example, we assume that having a baby will be "difficult" but at the same time we have visions of bassinets and bicycles, prom dates and graduations.  We figure we can handle the "difficult" parts, such as sleepless nights and getting them to eat their vegetables, because we have these other good things in our future.  These assumptions are important because they are what make life great.  They are what keep people hoping and living for tomorrow.  But, these are also the things that are lost and mourned when life takes a turn that you weren't expecting.  Assumptions are luxuries, and ones that you won't find in the home of a "special needs" family.

I say family because it's not just one of us who has special needs.  It's true that our youngest son has the challenging medical history, but he isn't the only person affected.  We have other children, and their needs matter too.  It's vital that we know the extent of our son's medical needs, his medications, his therapies, his appointments.  But it is equally important that we remember that today is "red" day at preschool, or that our oldest son wants to be reminded to take his Papa's guitar for show and tell.  We must also  be aware that while other children are giving thanks for their friends and families that our 6 year old daughter gives thanks for hospitals and doctors because they "saved" her little brother.   My husband is just like any other man wanting to protect his family and control any situation that may cause us harm.  His needs are knowing that we appreciate everything he does for us, and helping him to realize that it takes all 6 of us protecting each other,  that no one member of our family can do it alone.  My needs are relief from constant fear, and the realization that my life cannot be lived for someone else.  As much as I love my son, I need to be reminded that my life matters too.

Special needs families don't think about where to take their next family vacation.  They think about IF they ever will, or IF they'll all be there to enjoy it.  They remember what it was like to dream about bicycles and prom dates, but they now jump for joy at the sight of adapted walkers and a single look of acceptance.  Their diaper bags are so full of medical equipment that they find they have no room for diapers. However, despite the loss of assumption, the shift in dreams, the change in life's path, I think you will find that special needs families are genuinely happy.  We have a greater understanding of what it means to cherish the moments we are given.  We see the futility in planning one's life, and instead learn to roll with what we've been given.  This is not to say that there isn't anger and pain along the way, it's just that when our lives turn upside down...we simply learn to walk on our hands.