Disney Wonder Cruise 2019

What I Mean When I Say My Special Needs Son is a Blessing.

That's my best pirate face!

On this Thanksgiving day, I ponder on how many parents of special needs children believe what a blessing their child is in their lives.  How can they say their child is a blessing with so many sacrifices and challenges that comes with a severe disability that requires total care like my son?  Luki is 8 and still incontinent of stool and urine.   He is nonverbal and we have not had much success with using a communication device.  The only two commands he has mastered are "kiss" and "high 5".  He will occasionally give me an icon in exchange for a wanted item like a toy or snack and we work on this diligently through ABA therapy.  His ability to communicate with the world is so very limited. Yet, he is such a sweet and happy boy who gives me very little grief and I wonder in amazement how content he can be in such a state. I hope as he gets older, the realization of his difference does not lead him to despair.  I used to think raising him as a toddler was a challenge and I feared I was not cut out for the job but in hindsight, I realize he was (and is) an angel when compared to his three year old baby brother, Tae.  While Tae is a very sweet little boy, his energy and demand for attention and stimulation can be overwhelming at times.  Like all three year old boys, he has so much energy while Luki is slow in every movement.  Comparing the two boys is like comparing a tortoise and a hare. Tae likes to bite, pull my hair, pinch  and body slam me when I am lying down. I’ve never had to discipline Luki but tonight was the first time at my go at disciplining Tae. I don’t like this part of parenting but I'm not his friend, I’m his mother so it’s very important.  Before Thanksgiving dinner, Tae head butted me and I am left with a swollen eye and forehead.  It was by accident, but such things never happened with Luki.

Getting back on topic:   I've had to make career sacrifices to be Luki's primary caregiver, had to forego higher paying positions, the opportunity to work full time hours and move from graveyard to day shift.  I've had to deal with insurance companies, rude customer service personnel on the phone for medical equipment and on and on,,, don't mean to be a bore with all that headache.  So, I am not sure what other parents mean when they say their child is a special "blessing" in their lives but for me it is a gain of a spiritual nature.  We are all here as spiritual beings having a human experience.  But, sometimes, the lure of the material world can take over our priorities and we can lose sight of our true purpose for being in this world.  I can't speak for everyone else's life purpose but referencing the great spiritual traditions of the world, I suspect it includes being more loving, patient, kind, caring and compassionate . We are all here to learn how to give and receive love because the exchange currency in God's economy is love.  Luki reminds me on a daily basis that the things of this world is illusory and transitory but our soul is eternal.  He reminds and helps me to work on beautifying my soul more than the flesh because he is a beautiful soul in such an imperfect physical body.  And, that is OK.  Through him, my heart has become genuinely more sensitive to the suffering of the world which can feel very uncomfortable at times as things hit me harder than before.  On Thanksgiving morning I asked Gabe what he is thankful for with Luki and we both agree that we are grateful he has been seizure free for over two years, seems happy and we love the sound of his giggles, eats well and poops well (typical parents would not understand what a blessing the latter two are!) Our list is so drastically different for our typical three year old which include him  starting to talk in sentences, eating on his own, making progress with potty training, doing well at daycare and wanting to help with the care of his older brother by attempting to feed and clean him (the last one make my heart melt more than words can say).  I am grateful Luki is teaching Tae to be a loving and caring brother.

With Lucas by my side, it is easier to obey the First Commandment of putting God before all other things because I need to lean on his grace everyday on this unique journey.  And for that I am truly grateful to him.  I believe that before we are born, we all have free will to choose our parents, community, race and even disability we want in our earthly lifetime and some of us choose pretty challenging assignments.  What if Luki chose his disability to help me on my own spiritual journey?  If that be true, I could never repay him for the challenge he has taken on for my sake. I would be eternally indebted to him for his sacrifice.