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Sunlight Burning at Midnight a memoir by Jessica Ronne

 

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Just some random, irrelevant, humorous, and hopefully inspiring musings on life, love, faith, widowhood, remarriage, adoption, blended families, caring for a handicapped child, mothering seven children, chickens, cooking, grief, over-coming grief, and everything else in between. Just Keep Livin!!
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We made it home with spackle and partial sanity in hand where we eagerly awaited our departure for the airport at 1:00. Once at the airport, I was pleased to discover that there were a few unexpected perks to traveling with a special needs child, the main perk being that I was invited to the front of the line for everything. Boarding passes, pat downs, and first in line to board the plane (which really wasn’t such a great perk I discovered once it was too late and we were comfortably seated within the confines of the plane). After my pat down, they passed on Luke deciding instead to swipe his hands with a cotton swap type thing which was met with a big smile and multiple head turns, his way of saying there was something very entertaining about this action. We easily found our gate, glanced around, and discovered two open seats in the far corner of the room. Hastily walking towards them, I tried desperately to keep Luke’s long, curious appendages at bay as we passed numerous onlookers. He has a tendency to reach out and grab anything or anyone that may hold the slightest bit of interest, especially if he happens to notice something worthy of going in his mouth, when suddenly I heard, LUCAS!!. I turned in the general direction of the voice, surprised to find that someone actually knew Luke in the airport. It turned out to be the speech therapist from his school! What a blessing, to end up sitting right next to not only someone who worked at a special needs school and would be extremely comfortable with a child like him, but someone who actually knew Luke and his odd tendencies! Thank you Lord I thought as I settled in for about 5 minutes getting comfortable with our surroundings and hoping that Luke would do the same.

airport1Luke hanging out

I began to relax the muscles in my body, breath slowly exiting my lungs as I exhaled, enjoying the peace of the moment and then it started…he began growing restless, flailing his arms, extending his legs above his head (the child is incredibly flexible), and saying, MORE!, MORE!!, MORE!!! as loudly as possible. Generally when he says this, and there’s nothing that he’s receiving in the moment, he is in fact saying, “I’m bored and unless you soothe my boredom in the next 2 seconds, I will in fact provide your environment with such a display of discontentment that you will wish that the Lord himself would return in all of His mighty glory and splendor to transport you immediately out of your current condition.” At least that’s what I imagine goes through his thought process. Out came the gigantic bag of popcorn I brought, my recent nighttime craving of Skinny Pop that I had noticed immediately before our departure and thought, that will make a clean, non - filling snack for Luke (and me) throughout the day. I began dishing it out to his eager, outreached hands, one kernel at a time, hoping to make it last throughout the duration of our day.

airport2SkinnyPop - hopefully the cure for all ailments...

It kept his interest for about 20 minutes and then I heard the welcoming beckon of, “Those who need additional assistance are now welcome to board.” Yay for having a disabled travel companion - we were officially Tennessee bound! I wheeled Luke up to the plane entrance to be assisted by two extremely helpful flight attendants who not only took all of my luggage and bags, but the pilot also came out and personally offered to fold up his wheelchair. I was extremely impressed with the customer service I received in Grand Rapids. Chicago would turn out to be a different story. Luke and I settled into our seats in the exit row, a wonderful perk because he was unable to bother anyone in front of him. He was fascinated by his new surroundings and was actually very entertained by the fact that he could lift the window shade up and down, over and over again, almost in effect creating his own movie by watching the comings and goings of the crew down below. The first 5 minutes this seemed to entertain him and then as quickly as it began he was over it. ALL DONE, ALL DONE, ALL DONE!! I won’t type that out as many times as he vocalized it because I’m sure you have better things to do with your day, but he probably said it about 500 times in the next 20 minutes as I sat there wincing, grimacing, gritting my teeth and praying, “Lord, please make him mute as you did to Zechariah for his disbelief, Jesus please seal his lips, just for today!” No matter how hard I mustered my faith for the miraculous to occur, the Lord did not grant my wish. Instead I received a lesson, once again, in patience and not growing weary in running my race.  The plane’s engine started to rev and my sweaty palms took hold of Luke’s shoulders as we braced for take - off. We were air bound and to my absolute amazement, he acted like any other little boy, eyes wide with wonderment basking in all the whirls, clanks, and swishes that go along with a plane taking off!

airport3waiting for departure

All in all the 30 minute flight to Chicago was a huge success. I didn’t have to resort to using my laptop nor the numerous Veggei Tales DVDs I had packed; the experience was enough to tickle his fancy for the duration of the journey. Once we landed we waited until the very end to depart having an hour to spare before our next flight, or so I thought we had an hour to spare. We arrived at our next gate with about 35 minutes until our flight to Nashville only to discover that we would be delayed an additional hour. Not necessarily the worst case scenario in the scheme of all of the scenarios in the whole wide world, but I knew Luke would get extremely antsy before the end of it all and antsy actually became a bit of an understatement.  We went through the popcorn, and we tried to watch movies which he was not interested in instead his curiosity peeked by all of the buttons on my laptop which he then attempted to destroy by clobbering them with his long, saliva/salt drenched finger tips. We tried going for a walk, which was met with numerous stare downs from strangers, we went potty, in the ladies handicapped stall which was just really, really interesting, we tried gum, something Luke has never had before and was mesmerizing for him, we sang every single song I could think of, we played patty cake, we played patty cake with our feet, which he found highly entertaining, we met some nice new friends, and finally we drank lots and lots of apple juice which would prove to be very problematic in the next few hours.

airport4Watching Veggie Tales

FINALLY, we were called to board. I got in line, handed over my boarding pass and proceeded to run down the aisle onto the awaiting plane. I stopped dead in my tracks at the entrance to the plane, surveying my four bags and eight year old child in a wheelchair that I had to somehow get on a plane to Nashville. I hesitantly left Luke at the entrance and boarded the plane, hoping to find someone who would be able to assist me. I found a flight attendant folding blankets and asked her if she could possibly help with my bags freeing up my arms to carry my son onto the plane. She responded, “That’s not my job, you should have asked someone before you boarded.” I’ll omit the response that my subconscious replied, it wasn’t very Christ like, and the conscious me said, “Then I’ll need to leave my son at the entrance of the plane so that I can carry my bags and then I’ll have to go back and get him.” She replied, “Fine, I guess I can carry your bags if you can get your son.”

I smiled through gritted teeth as we loaded baggage and child. The plane was boarded, Luke was beyond over this day, and we still had about an hour in the air. I tried all of the old stand bys, movies, singing, hissing under my breath, more gum, more popcorn, more juice, and many, many, many prayers. The flight attendant filled Luke’s sippy cup initially with juice and every time she walked by from there on out, in his mind she was the juice distributor, and he would yell out, “MORE, MORE, MORE” and it was about the only thing that made the hollering subside for a bit so I kept allowing him to have more and more juice. About 10 minutes before landing, the point where I was literally counting one one thousand, two one thousand, three one thousand in my head, I smelled something - something pretty stank and nasty, something sitting really close to me, like probably right next to me. I lifted Luke’s bottom up, patted him down with my hand which lurched away when it discovered not only a sopping wet little boy, but also a sopping wet airplane chair, urine soaking through his shorts and half way up his shirt. The apple juice idea had obviously backfired on me. I did what any mother would have done in that moment, I pretended like absolutely nothing was wrong. I placed him back down upon the urine soaked seat and did my best to entertain him to the point where he didn’t notice how wet he was for the remainder of the flight.

We landed, I sang a hallelujah under my breath, and we proceeded to wait until every single last person was off that plane and then I, very carefully and discreetly, lifted him up out of his seat, having him walk very swiftly in front of me while I stayed plastered as closely as possible to his backside in hopes of avoiding any additional questions or onlookers inquiries about the wretched urine smell emanating from this child. I managed to put him in his wheelchair, loaded my back up like a mule with our luggage, and found the absolute nearest bathroom possible where I undressed him, diapered him, and put his pj’s on for the night. I was exhausted at this point, near tears, so emotionally and physically drained from the day but happy that we had finally made it. I called Ryan who was supposed to be out front waiting for our arrival, and while we connected, he had to quickly inform me that his phone was dying and he couldn’t talk long. I headed towards what I thought was the entrance, by the rental cars and hotel vans, and he headed towards where he thought he would pick me up, a floor above, by the baggage claim, and Luke just screamed and screamed. He was tired, being in a different time zone, he was hungry, having only had popcorn for most of the day, and he was just sick of it all and as he screamed and as my husband called wondering where I was, and as my phone started dying as well, my sanity officially crumbled, and I just started crying, in the middle of the airport, tears welling in the corners of my eyes as I couldn’t find my husband, as my child kept screaming, as my back was killing me from being a mule all day, and as it seemed like everyone in the whole airport was staring at me. I turned to the first person I found, a gentleman, and asked, do you know where the baggage claim is? Come to find out he didn’t speak English but he did understand the word “baggage” and he pointed towards the elevator telling me to go up. I thanked him and headed up where I immediately saw Caleb and Tate running back and forth trying to find their mom and brother. I exhaled, we had been found.

Once safely in the car we headed home, 90 miles away where Luke fell fast sleep. Upon our arrival at 11:00 p.m., I gently lifted him from the backseat and placed him in his familiar bed in his new room. He never stirred and in fact slept all night long and into half the morning the following day, finally awaking at 10:00 happy as can be. And that’s how Luke and I officially made the move to our new home, a sign of new beginnings and peace, in the hills of Tennessee.

Just keep livin!!

Tagged in: life special needs
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  • Mary Burt
    Mary Burt says #
    I swear you are the STRONGEST woman I Know!!! Continued prayers for you!!!

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