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The 12 Days of Christmas Special Needs

Jude in water therapyOn the first day of Christmas, the good Lord gave to me: a child with special needs.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with special needs.

On the third day of Christmas, the good Lord gave to me: an ache in my heart, and a heart full of love for my child with special needs…

And so the poem, penned by an anonymous author, goes.

I wrote my own interpretation of the 12 Days, which is below. Buckle up.

  • Day 1- obvious. Though we didn’t know the extent of Jude’s needs the day God gave him to us, we were certain he was special. Who cares about the needs? Diagnoses bring up the rear in reasons that this gem, Jude, is special.
  • Day 2 – for us, a given. Not all kids, especially special needs wee ones, have the same experience. Not all parents’ hearts are filled with unconditional love. When a child doesn’t feel unconditional love from his parent, well, that kind of pain, void, hurt and wrongdoing trumps even the greatest or most challenging diagnosis.
  • Jude in water therapyDay 3 – an uncomfortable truth. The heartache that comes with parenting a special needs child is hard to recognize at first. At least it was for me. Because if I had even a fleeting thought of the remotest possibility of the smallest twinge of SADNESS that my child has a need beyond “the norm,” than does that mean I do not love him strongly enough, deeply enough, unconditionally enough?Am I not a good enough mom if I wondered what type of kid he would be if his first 48 months on the planet did NOT include such hard work, so many pokes and prods, hundreds of hours of therapies, special education, doctor after doctor, skull shaping helmets and AFO’s?  Do I not love him completely enough if it stung just a tiny bit that Jude took his very first, hard earned step toward his physical therapist in the rehab gym at Akron Children’s Hospital rather than toward my and his Dad’s cheering arms in our living room? Do I not love him enough if I wonder what his future will be and if he will face challenges he didn’t sign up for?Once you grieve the loss of perfection in your child, once you recognize and acknowledge that heartache, it dulls. The heartache never completely wanes. It simply becomes a strength. The ache steels your heartbeat, your determination and drive. That heartache becomes a reminder that, “hell, yes” you love him completely and unconditionally and perfectly. You are his parent and your heart beats stronger and more full of love for your child because of that dull ache. That is when the uncomfortable truth morphs into a gift of strength in disguise.
  • Day 4 – a direct result of Day 3. You will cry. You will get over it.
  • Day 5 – See above. At first you wipe your own tears, lest anyone see you weak or sad.  Then you wipe away tears in a doctor’s office or while waiting on an MRI or in the driver’s seat as your car, seemingly on auto-pilot, turns into the hospital parking deck, or as your early intervention team drives up the hill away from your house, all in a line of social worker/therapist cars. . . like the cavalry retreating (don’t worry, they will be back next month).One day, you will let your husband/wife, sister, best friend wipe your tears. If you’re lucky like I am, the best day will be when the chubby 4-year-old hand of your special needs child will wipe away a rogue tear that escaped your utterly exhausted eye and rolled down your cheek. That’s the moment when you will get over the tears.
  • JudeDay 6 –  Intentional smiles, walking stairs with reciprocal steps, not screaming bloody murder in a pool at water therapy – in fact, LOVING IT, chewing and not choking on a fish filet (not meant as Golden Arches product placement!), catching a ball, standing within arm’s reach of a mascot, moving from batting his head as a self soothing technique to rotating 1 ankle constantly as his new self soothing technique, recognizing a FACE in a 1-dimensional picture, learning to ask for a breathing treatment when his asthma flares rather than being scared of it and then you are blown away when he holds his own nebulizer for nighttime meds . . . rays of hope.
  • Day 7 – my personal favorite. If I don’t laugh, I cry. See Day 4. Day 7 is a much healthier way to be for me. Plus, I literally crack myself up.
  • Day 8 – You will try to do it all on your own. You will light your life’s candle at both ends. And you will burn yourself. Trust me on this one. Your friends loved you before you were blessed with your special needs child and they love him too. So allow them in. They can run an errand, spend time with your other kids, take you out for a drink and a laugh when ya need it, whatever. You chose your friends wisely and you hold them dear to you, so trust them to actually be your friend.
  • Day 9 – Akron Children’s Hospital, Summit DD, Cleveland Sight Center, Victory Gallop, Hangar Orthopedic, Akron Public Schools Special Ed- enough said!
  • Jude undergoing sleep study

    Jude undergoing sleep study

    Day 10 – “Objects in the mirror are closer than they appear.” That is what the side-view mirror on most cars reads. It holds true for small accomplishments in the life of a special needs child as well. As deflating as set-backs or the never ending up-hill roads can be, accomplishments, no matter the size, are awesome. Accomplishments are closer than they, at first, may appear.

  • Day 11 – You will dig deep to find your courage. When you finally open that spasticity information folder you got when your son was diagnosed with cerebral palsy, it will take courage. When you talk to your in-laws about sensory processing disorder/autism spectrum disorder and how vestibular input is critical to your son – or why he simply cannot be offered a bite of steak or whole chicken leg as he will choke – it takes courage. When you simply meet and hold the stare of a particularly judgey, perfect-looking mom as your son screams, writhes and beats his head into your clavicle, rather than give her the verbal bath you have so eloquently prepared – locked and loaded – it will take courage. And from all of the times you are brave and courageous, you will build a brand new pride.
  • Day 12 – You will share. For me, I will write. That book. Finally. Someday is now.

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