jade in the parke

Saturday, September 6, 2014

Special needs siblings serving their family

Special needs siblings serving their family & how do you measure service hours for college applications when your service is normal in the abnormal world.

This is the story of today:

My husband is out of town for a much needed R&R fishing trip with friends, 
 2012 Photo Cred: Doug Parke http://goodimagephotos.com
I needed to teach at the gym early this morning. No problem, right?

Well.... let's just say that at 7:05am, I stop brushing my teeth sensing I should check my 9 year old's blood glucose.  Climbing up the bunk bed ladder with her Vera Bradley's Happy Snails wallet which holds her testing kit in one hand, I wake her and find out she's 71. 

Potential crisis averted after ingesting a handful of Cotton Candy grapes (15 grapes to be exact as most grapes are one gram of carb per grape) as I do the "Wake up" drive by to my groggy 15 year old who has to be up at 9:10 am for her ride to Marching Band practice. 

Feeling a bit overwhelmed, I wake up my exhausted 17 year old son who had three Varsity Soccer games this his first week of school with multiple assignments due including a college resume (still working on that one). 

He woke up and stumbled out into the hallway to help check on his little sister with his cell phone in hand ready to text me her updated test numbers after 15 minutes have passed.  With only 45 minutes until my class, I grab my gym bag and finish getting ready. A sideways glance in my oldest girl's room catches him lowering the bed rails on her cool remote bed aka a rented hospital bed that she's had since her big surgery
He has her manual chair ready for her transfer. As I am running back and forth from the car to the house as I forget my water bottle, I get a text with a crazy high number of 314.  What? It went up that high in 15 minutes? I wonder if juice from those super sweet grapes (that have notes of cardamom in case you were wondering if they tasted like cotton candy) are coating her finger tips and altering the reading. I call up to him, "Please ask her to wash her hands and try again" as I walk out the door for the final time. As I reach the end of our street, the phone rings and I hear a "155" and he passes onto me her request to go back to bed. After expressing my appreciation, I remind him to help Abby get her leg braces on and help her stand up from her tiny wheelchair, so she can do her morning routine.

I pull out onto the main road relieved knowing my son stepped into the gap. He may have memories of battles with his mom on the amount of time he gets on the computer from not that long ago ("Why do we watch other people playing video games on youtube? But I digress), but when push came to shove, he knows what's important. A part of me, the worry wart mom that projects 10 years down the road based on habits now, started to melt away. 

I marvel at him becoming an adult this week. Eighteen years ago on September 10 (Five years and one day before the day of infamy 9-11), my nine pound, ten ounce chunky baby was born. 

J center surrounded by two cutie pie girls

Now, he is looking at colleges and beginning his busy senior year with a thesis, speeches, co-leading his philosophy club, running his own part time lawn mowing business and the uber stressful period of navigating the college application process with deadlines looming on November 1st and continuing until May when final decisions are made.
Athens, Greece

We have been stuck in a rut with writing his resume, especially in this pesky area which he seems weak in: Service and volunteer hours. He has some, but not near the amount as his peers. We have been on the receiving end countlessly during surgeries and recoveries, having babies, multiple hospitalizations with our special needs kids and my husband's battle by the River Styxx (this is my cryptic way of saying he lost his Achilles' tendon to MRSA last year) by hot meals being brought to our home, grocery shopping errands ran, a lawn mowing by a co-worker, child care, carpool help and even our laundry being picked up and delivered back to our home (that was very humbling and I cringe a little to think I said yes to the prodding from our meals coordinator at church). 

Have we served others in the same way? Have our actions been loud enough to be "caught" by the next generation of Parke's. If someone looked at our volunteer hours, it has been centered on our kids and their activities and increasing in hours and commitment as our kids have grown and we have emerged from the diaper bag trenches. I think that is normal and it is blessed. 

Today there was an opportunity for him to serve a family from his school moving to a new home, usually we jump on that type of service, but we had to decline which filled us both with regret and a bit of guilt. Sometimes being a special needs family means that we have to say no to worthy endeavors to huddle close and to care for those we are called to serve. A mental plan to join in with our church's Habitat for Humanity's building project was stalled before it even began when my nine year old developed Juvenile Diabetes. We are THAT family. We can be embarrassingly needy at times. So, we love it when there is a need where we can serve someone else. 

Yet, when the opportunity arose for him to step up to serve our own little, needy brood, and go against the normal desire to sleep in as every teenager in America would love to be doing after the first week of school, he stood up by God's grace. He woke up without one ounce of grumbling and served quietly not in the college application with documentation kind, nor in the Presidential kind, but he did it with no expectation of thanks and recognition which is the best kind.

I come home and find Abby made it off successfully and cook up a hot breakfast. He is curled up half awake on the couch with his little sisters body slamming & giggling way too loud for the morning hours. While eating our eggs, I hear from the kids nonchalantly that Abby walked into her bedroom, fell hard as she tripped over a hair dryer left accidentally on her floor. Her long leg braces called KAFO's (Knee Ankle Foot Orthoses) have to be in a locked position at the knees to keep her straight so she can shuffle walk. Darn that hypotonia! Her littlest sister put the tripping hazard away and her big brother stepped in and lifted her up back onto her feet. 

The mom guilt thing is real, people. If I had known she needed to be there early to practice, I would have secured a sub for my class. I am so thankful that there was peace and calm in our home in the midst of the crisis and my boy is becoming a godly man who cares for his family. 

There are eternal blessings that can't be documented nor proven.

After he curled back up on the couch in a bagel coma, this momma made the biggest, baddest cafe mocha I could brew. 

Happiest 18th, son! We are blessed.

Moms with little ones, remember:
The Days are long, but 



  1. Congrats and be proud of another Man being in your life along with Justin. Enjoy his cool and quite but responsive nature. Love you all. Nittoo

  2. the days are long, the years are short, the moms are blessed, the kids are a stellar blessing and a force, a FORCE I say. :D Thanks for sharing, now I'm going to go redo my eyeliner. Dolly

  3. Thank you, Dolly! You have been a mentor to me raising your boy and you probably didn't even know it. It means a lot that you read it and need a do-over in the make up department to boot!

  4. Lita - this is a lovely tribute to your son's maturity and growth. I wonder if there might be some way to capture his service to his family in a college essay...? (not there yet, so no clue, but just a thought)

    I loved this insight into a busy morning - the "stuff of life" that can be lived in such a way to bring Glory to God! Love :)

  5. When attending a seminar at UMBC, the people running the seminar said we want to learn about you. We want to know if you have spent your time serving your family by working to help meet economic needs and such--every home is unique and we do not expect that every kid has lots of time on his interests. I think he surely should write that he must aid you around the house caring for the family. Thanks for sharing this. I can relate. We are the kind of family that has been a recipient of a lot of love.

  6. I read this by chance but needed it. I'm the older sister of a kid going in and out of the hospital these days and seeing you appreciate your son's service means a lot to the rest of us serving older siblings, thank you for writing this.