familypic
 
JessPlusMess

Limited Edition

Autographed Copy

Sunlight Burning at Midnight a memoir by Jessica Ronne

 

Subscribe to Blog

Your Name:
Your Email:

Search

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!!
Subscribe to this list via RSS Blog posts tagged in special needs

“Why didn’t you bring Luke?”

As a family with a special needs child, we often hear this question from well-meaning folks, and there’s not a simple answer just like Luke is not a simple child. Luke is my severely handicapped son, and I love him dearly. I have fought for him to have the best he can possibly have in his circumstances. I have gone above and beyond to make sure that he is comfortable and stable in life because the truth of Luke’s world is that he does not live with mild handicaps – he lives with major handicaps – handicaps most regularly functioning people will never understand: physical, mental, and emotional limitations along with lacking in gross motor skills.  Even I, his mother, don’t fully understand at times; however, I allow for the fact that I don’t understand as I seek to make his world one full of stability and love. At a routine twenty week appointment while pregnant with him I was told that his brain was so full of cerebral spinal fluid that I should consider abortion because it was highly unlikely he would make it to birth, and if miraculously he did, he would probably die in my arms. Luke and I have been fighting ever since.

Luke is now ten years old, a complete miracle who continues to shock and amaze even the most skeptical of experts. His brain continues to enlarge and develop. He continues to progress. His eye sight is better than anyone ever would have predicted it would be. He has begun to say a few words; however, even with his continued progress and accomplishments, Luke is still and will always be a much more difficult child to care for than my other children are. He is a twelve year old in diapers. Full time diapers. He can speak a handful of words to get his point across such as “more” “all done” and “juice" and eat. He walks, with assistance, but not for long distances. He becomes extremely agitated with anything new such as new people, new environments, new foods, or new videos to name a few which make exposure to anything new a tiring and exasperating experience for his immediate family. When I say he becomes agitated, I mean specifically he screams “ALL DONE!” until the new is replaced with something old and familiar which is why taking Luke anywhere is an overwhelming task for all involved.

We do attempt to integrate him into limited family activities not so much for him, but for our peace of mind as his parents and for all the others who ask the question, “Why didn’t you bring Luke?” We (his family and society) need to feel like we are including him when the reality is he would be much happier and more content in his familiar environment at home, walking outside, eating lunch in his reliable chair, and retreating to his den of safety, his room, to watch one of his beloved videos. Recently we included him in a two hour family Easter egg hunt at church. We packed his bag, diapers, wipes, sippy cups full of apple juice (the only beverage he will drink), a change of clothes, and his wheelchair, along with our six other children. We loaded him into the van which was confusing and disorienting for him because he associates the van with going to school, and then we proceeded to hear “ALL DONE!” screamed at the top of his lungs for the half hour drive to the church. When we arrived he was content as long as one of the parents (not his siblings) was walking him along the track that encircled the field where the hunt was occurring (so, no he wasn’t participating nor was that parent participating) or eating skittles which he happily discovered when one of his siblings offered to share a package with him. A package turned into about 20 packages within an hour as the “MORES!” grew louder and more persistent. We left with a green/blue/red (he spit out the orange ones) juiced monster, skittle juice in his hair, clothes, face - every visible body part, on our hands. Good thing we had wipes in the bag. 

theskittlemonster
Luke, the Skittle Monster

In order to keep him pacified on the car ride home we frantically stopped at McDonalds to pick up food and then fed him, slowly, bite by bite lest we hear the dreaded “ALL DONE!” or worse yet, ear piercing screams for the thirty minute car ride. Once home, we hosed him down, again, with multiple wash cloths, scrubbed the entire bench seat in the van (which still has remnants of ketchup and mustard forever etched into the fabric) brought him to his room, closed his bed, and popped in a video which he was entirely too happy to see. Then all breathed a huge sigh of relief. That’s our reality with Luke for about 2 hours. Imagine an actual family vacation with him, in our travel trailer, or worse yet, a hotel room.

My late husband and I tried the hotel room once, and it was enough of a disaster for us to vow never to make that mistake again. We took two year old Luke and his older brother Caleb on an overnight trip to Frankenmuth, Michigan, the Christmas city, full of joy and happiness and for our family, full of incessant screaming from a little boy who was not at all in the holiday spirit. Luke was so distraught at the change of environment that he repeatedly screamed throughout the day and night, banging his head against the pack and play, bloodying his face, until we finally gave in and gave up, packed the family’s belongings at 1:00 am and drove the two hours home because he would not stop disrupting the entire hotel. 

I appreciate people’s intentions but what I want to say is this: if you do not have a special needs child you cannot understand. We, the parents don’t even fully understand at times! Most of us are doing the absolute best for these children, and it is hard. Our patience runs thin. Our mental stamina wears down. We beseech the heavens for answers and finally succumb to the knowledge that God is God and we are not and for some reason we were given the sacred responsibility to raise these special kids beyond our understanding or comprehension. We love these children from the depths of our souls, but you stranger (or friend or teacher or family member) need to understand that as their parents, we understand things about them from the depths of their souls that most cannot, nor will not, ever understand. I know Luke associates me with Veggie Tales. His own mother. When he sees me he breaks out into singing a Veggie Tale song. This stems all the way back to when he was one years old. He also associates me with the song Amazing Grace which I sung to him every day while he was in my womb and then again as I rocked him for two weeks in neo natal after he was born. Luke associates me with the crocheted blankies I’ve made him throughout the years and with counting each and every step that we walk up as we exit his room to the kitchen. Luke doesn’t enjoy it when people love on him, hug him, kiss him, or cuddle him, never has, never will. You can, if you need that for you, but it annoys him. He doesn’t feel loved through those actions. Luke experiences love through chocolate cake, or brownies, or singing songs, or doing goofy paddy cake with his feet. I know this about him; I’m his mother. I know Luke hates new and to attempt to bring him somewhere, on a family vacation, is not loving for Luke, it is actually borderline abusive to not only him but to his entire family. We can’t explain to him why his entire schedule has just been uprooted in an instant, and he can’t explain to us why he’s so upset so instead he screams and screams, the only form of communication he knows for his angst. We owe ourselves as parents the comfort of getting away occasionally without the added stress of a child who doesn’t even want to be there. We owe that to our other children, and most importantly, we owe it to Luke. That’s why any resources which are available to help families such as ours or others are so greatly appreciated and pursued, especially in times of much needed respite. That’s why we need more resources such as day camps, respite care centers, equipment, and especially trained people to help with these children. 

Ryan and I often discuss what the future holds for Luke. We’re honestly not sure. My motherly instincts want to protect him forever, here in my home, where no one can take advantage of him or harm him. My wifely instincts are also really excited for the day when all the kids will be out of the house, and my husband and I can enjoy each other’s company traveling the world. I don’t know what Luke’s future looks like, but I have about six years to get some sort of loose plan in place for him. My ultimate desire looks something like a faith based retreat type of living quarters within twenty minutes of my home – not a very probable or viable option anytime in the near future. I don’t necessarily want to be a full time caretaker for my twenty year old son, but I’m not sure I’ll be comfortable placing him in a state run facility either. I also envision him attending a learning facility by day (physical, occupational, and speech therapies) and coming home at night with an aid to help us and him. His future, especially where we live now in rural Tennessee, concerns me because I’m not sure what my options are. Families with special needs children just want the best for their children. We want them to be safe, have fun, and to be comfortable, and we need more options, especially in rural environments, to make these hopes and dreams a reality not only for these special children but also for the families that have been entrusted to care for them.

I also wrote this as a guest post for the blog www.livingloud.org. Check it out. Great story, great people, fantastic mission.

Just Keep Livin!!

Recent Comments - Show all comments
  • Betty Bechtold
    Betty Bechtold says #
    I just a read your story on KSDK from St. Louis. God has plans for each of us. I am so happy for your family. United as one wit
  • Janice
    Janice says #
    Hi, I'm new to your blog after reading about your marriage, and I just wanted to say that I think when people ask you why you didn
  • June
    June says #
    Just a suggestion for the future. Check in to the "Galilean Children's Home" at Liberty Ky. They might do respite care for you. PO

Latest Blogs

Mother's Day Sale and Interview
Just a few items for consideration as you go about your week.   First - In honor of all of the wonderful mothers, grandmothers, and motherly figures in the world, I'm offering a Buy One / Get One 1/2 off sale on all autographed copies of Sunlight Burning at Midnight ordered here on the blog and also at Facebook/jessplusthemess.  It's the perfect time to buy one for yourself and then gift another to that special someone in your life. This sale will be honored all the way through to Mother's Day - May 14.  If you'd like the books sent to different ad...
Continue Reading...
Easter Memories 2017
One way we’ve been able to accomplish this desire is by peeling back many of the layers of what’s expected for a particular holiday and ask ourselves: A. Do we have the energy levels required to enjoy this activity (whatever it may be – elaborate meal, presentation, etc) or will this addition stress us out and if so, the activity needs to be eliminated or reconfigured to meet our current energy levels so that it doesn’t potentially hinder the true meaning of the holiday, and B. What simple traditions can we incorporate to ensure that our children are honoring whatever this holiday is truly a...
Continue Reading...
Two Beautiful Books, My Kid's Reactions, and a GIVEAWAY!
A few weeks ago I was offered the opportunity to review two recently released children's books, I’m Going to Give you a Bear Hug by Caroline Cooney / Illustrated by Tim Warnes and Bible Basics, A Baby Believer Counting Primer by Danielle Hitchen / Illustrated by Jessica Blanchard. 
Continue Reading...
Big Changes Are 'A Comin
Blessed but stressed has been our life motto for over three years now – ever since we made the decision to add an 8th child to our family. Some have raised questioning eyebrows with this decision, but we forged through, and we stand by the decision today as one of the best things we’ve done for our family, BUT we are tired and stretched about as thin as they come. Something about raising teenagers, and not sleeping because of a newborn, and then raising teenagers with a toddler who does finally sleep (PRAISE JESUS!) but never, ever, ever stops moving when she’s awake, and then there are the ...
Continue Reading...
Banana Chocolate Muffins
These are really, really good and really, really addicting so it's a good thing they have some health benefits or I'd feel really, really guilty after eating a few.  I usually make these for the kids breakfast because most days they're up at 6:00 am so they need something easy, filling, and tasty in their bellies. These always do the trick.  Banana Chocolate Muffins 3 ripe bananas. 2 cups flour½ cup maple syrup2 eggs1 tea baking soda1 tea baking powder½ tea salt2 TB coconut oil1 tea vanilla½ cup orange juice. 1 cup dark chocolate chips Mix the first 10 ingredients together. Stir i...
Continue Reading...
Pure Goodness Spaghetti Sauce
3-4 TB olive oil (depends on how much garlic and onions you add). 1 large onion chopped 4-5 TB finely chopped fresh garlic (You can add chopped celery as well if you want) Saute these three ingredients for a few minutes. Add 4 14 ounce cans of quality tomatoes (crushed or whole is fine - I like Carmelina brand) Add as much fresh spinach as the pot will hold. 4 TB Italian seasoning 1/4 cup maple syrup 1/4 cup red wine 2 cups of tomato juice (we make our own) Salt and pepper to taste Simmer all of this on low for an hour or two.  Turn heat off and blend all together with a han...
Continue Reading...
Marriage Pep Talk and a GIVEAWAY!
In my second marriage to Ryan I have valiantly attempted to right the wrongs that I naively produced in the first marital relationship. They say “ignorance is bliss,” and I suppose that I was ignorant the first time around; however, having my eyes wide open through a second opportunity has changed my perspective on life and love. A few of my initial struggles were cemented in my identity as a strong willed, first born, young wife, and often included a lack of respect towards my husband (I knew best, of course!), and one that goes hand in hand with the respect issue, a lack of grace. I usually...
Continue Reading...
Chocolate Chip Almond Butter Delights
This week’s recipe is a spin off of my go to, extremely easy, “I only have 5 minutes to whip something together” dessert. The original recipe called for peanut butter, egg, and sugar. I’ve amped up the health factor by substituting some of the ingredients and adding a few more. My kids love em. Hope you do too. Chocolate Chip Almond Butter Delights. 1 cup almond butter 1 egg ½ cup maple syrup ½ cup pecans ½ cup dark chocolate chips. Mix everything together in a big bowl. Spoon droplets onto a cookie sheet and bake at 350 for 10-15 minutes. Just keep livin!
Continue Reading...
Numero Uno Sanity System - THE BIN
At the Ronne homestead we employ many systems in order to maintain some level of functionality for the family and for the parent’s sanity. The bin system is by far the most useful and consistent tool we use as it has been in place from almost day one of our blended family. This is a system that I grew up with (as the oldest of 10 children) and loathed with every cell of my being as a child. Funny how it made its way into my grownup family as well. The bin (or the brown box that I grew up with) is just a plastic container that holds the children’s misdemeanors for the week. The system starts ...
Continue Reading...
Healthier Chicken N` Dumplings
Simmering away and filling the house with deliciousness, my healthier take on a classic - chicken n' dumplings. This version includes bone broth, organic chicken, a plethora of herbs, and lots and lots of fresh veggies. Chicken N' Dumplings5 organic chicken breasts cut into bite sized piecesVariety of fresh veggies (carrots, mushrooms, celery, leeks, even spinach, whatever you have on hand) roughly chopped.Olive oilItalian spiceVege Sal1 tea thymeSalt if you must but the Vege Sal does a great job of seasoning if you let it.Pepper to taste2 cups water6 cups bone broth (or vegetable or chicken b...
Continue Reading...