Special Needs Spotlight || Jess

This Little Miggy || Special Needs Spotlight 208 Lukas

Hi! I’m Jess. I’m an author, teacher, wife, non-profit director, special needs advocate and mom of 8. A few years ago we moved from Michigan to rural Tennessee to pursue a simple life which we’ve discovered isn’t all that simple. In my spare time – which, let’s be honest, isn’t much, I enjoy gardening, raising chickens, baking bread and family times around the campfire. You’ll often find me at JessPlusTheMess or on social media writing about faith, grief, food, simplicity, blended families, gardening, special needs, and everything else in between.

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Miggy: Hi Jess and welcome. I am so excited to share your story today. I know a lot of people will be touched by what you have to share. As always, lets start at the beginning… when did you first learn that your son Lucas would have special needs? Was it while you were pregnant, shortly after birth or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Jess: I was excited to discover I was pregnant in 2004. The pregnancy was going along smoothly until a routine twenty week ultra sound appointment where I was informed that my child had suffered a stroke in utero, and I should prepare for this child to pass away at some point. I was encouraged to terminate the pregnancy but chose not to allowing my faith to guide me instead. Our baby boy was delivered via c-section on August 12, 2004 and as he was lifted from my belly, he let out a hearty cry for life, and I wept. My husband Jason and I named him Lucas which meant bearer of light. Lucas was diagnosed with hydrocephalus and underwent a shunt surgery at three days old. He was discharged two weeks later. Initially I was always so scared. I had no idea what to expect with raising a special needs child, and I was always trying to anticipate what was next for us and for Lucas. Today, fourteen years later, I’ve learned you can’t always prepare for what’s next and it’s a much more peaceful (and less stressful) way to live life by just enjoying the moments you have in the present.

Miggy: Can you teach us about Lucas, about his specific needs and how his needs affect his and your day-to-day life?

Jess: Lucas has profound special needs although he is the healthiest special needs child I’ve ever met! He’s not on any drugs and rarely gets sick. Thankfully we haven’t had any issues with his

health since 2009! Lucas has a shunt which we are aware of but not obsessively aware of at this point. He has very limited mobility, is non-verbal for the most part, and incontinent. Lucas needs assistance with every aspect of his daily life from eating, diapering, bathing, walking and everything else. Lucas is one of eight children so our daily life is quite exhausting. My husband and I make it a priority to get away every couple of months for a few days to recharge and reconnect and sleep.Miggy: What are the biggest worries you face for Lucas? On the flip side, what are your aspirations for him?

Jess: I worry about his future living in rural Tennessee. We took for granted many of the resources that we had available to us in Grand Rapids, Michigan, and we assumed those same types of resources would be available anywhere. We were wrong and so we recently started a non- profit organization called The Lucas Project to help families in rural Tennessee – primarily to help caretakers with respite and bills related to medical costs (www.thelucasproject.org). I worry about how to finance his future as well. There are some wonderful long term facilities within a few hours of where we live but they’re expensive. I worry about potentially having to care for a grown man one day and whether or not I’ll have the mental and physical strength to accomplish this task and will I want to? Or will I resent having to change a thirty year old man’s diaper? I don’t know at this point.

On the flip side, I’m so proud of how his life has touched so many people. I wrote his/our story in my memoir Sunlight Burning at Midnight and I hear all the time how people are inspired by him. The interesting thing is that Luke has no pride–he just is. He does what makes him happy and he lives in his perfect little Luke world, and I believe his humility has led to his story–his life–touching so many lives. I aspire for him to continue advancing and to continue touching lives–even though he really has no idea the impact he’s had.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Jess: Oh goodness, I can laugh about it now but it was horrible going through it! When we moved from Michigan to Tennessee, I had to bring 9 year old Luke on a plane by myself. Luke screamed “ALL DONE!” at the top of his lungs for the entire two hour plane ride. The only way I could get him to be quiet was by giving him one cup after another of apple juice–which I did–which led to an unfortunate experience when we finally arrived in Nashville. I lifted Luke up from his seat and he was soaked through–not with just urine either!–half way up his shirt to the bottom of his pants. By the time I finally found my husband, I was a mess and broke down in tears. That was intense. I wrote about that experience somewhere on my blog.

Miggy: In addition to Lucas, you have had some other very challenging life circumstances. Lucas’ father passed away when Lucas was 5 due to brain cancer. You remarried a man about a year later who had also lost his wife to cancer. Your 4 kids and his 3 kids came to a combined total of 7, and then you had another child together! I don’t even know where to start or what to ask. You have endured pain and heartache but (presumably) also love and joy during the past several years….what would you like us to know about the lessons you learned during this time? Do you have any advice specific to being a blended special needs family?

Jess: I’ve learned to live each day to the fullest. I’ve learned to never take health for granted–for yourself or your loved ones. I’ve learned to invest in my family’s health which is why we moved to rural Tennessee where we grow and raise a majority of our food. I’ve learned to not take love for granted and when you love someone to show them often. I’ve learned–and I’m not always great at this–to try and seek the good in every day. I think all of these lessons have come in handy with our blended family. My mantra through the past ten years or so has been “just keep livin!” and that’s all we can really do. We can wallow in the pain of the past or we can rejoice in the beauty of the present. It’s our choice.

Miggy: How can people best approach or respond to Lucas? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Jess: People can respect that Lucas likes his normal. Lucas thrives on routine and structure and it frustrates me when people feel like they have to disrupt that flow. For example, Lucas likes his bedroom door shut when he watches T.V. and will scream bloody murder until someone shuts it. He doesn’t like all of the other sounds invading his space. Other people have had an issue with this and feel bad for him like he’s not participating in the family but he doesn’t want to participate! He wants his normal. We’ve also received some opinions about how we don’t take him on vacation with us. Again, Lucas likes his routines. Lucas likes his adaptive equipment. Lucas needs his huge crib and Lucas would make it so miserable for all of us if we were to bring him on vacation because he would repeatedly scream “ALL DONE!” until we brought him home. Believe me, we’ve tried, and we ended up driving home at 2:00 a.m. because he would not settle down.

Miggy: Jess you’re a special needs mom, a widow, a stepmom, a second wife with a second husband–in short, you’ve been through A LOT. Did you feel like being Lucas’ mom prepared you for any of the other challenges you’ve faced? Lastly, could you share the biggest lesson you’ve learned in being a special needs mom, who has also faced many other highs and lows along the way?

Jess: Yes I do. Lucas was the beginning of the ongoing process of letting go of this perception of control. I had to give up this concept of control when I found out that Lucas had suffered a stroke in utero and this lesson of giving up control has continued to play out in many other areas of my life including my late husband’s death, a remarriage, and now being a mom of 8. I’m a woman of faith, and I believe that everything we go through here on earth serves a greater purpose than we can even comprehend or imagine in the moment.

The biggest lesson is that you just have to keep livin’. You have to keep putting one foot in front of the other because you have no idea what awaits you around the next corner. It could be the most amazing experience of your life but you have to keep moving in order to experience it.

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“We can wallow in the pain of the past, or rejoice in the beauty of the present.” I love that Jess, and I find it especially meaningful coming from someone who has been through a lot. I believe that living life that way, especially after heartache and loss, is a mindful decision each and every day. It takes strength and power to chose the beauty of the present (whatever that may look like) over the pain of the past. This couples powerfully with what you said about your perception of control and how Lucas taught you how to give up the concept you had control. None of us have as much control over our lives as we like to think–for some people this is more obvious than for others–but as you said, we can choose how to react. Such powerful and beautiful life lessons Jess. Thank you so much for sharing your Lukas and your life with us today.

Check out Jess and her husband Ryan on The Today Show a few years back. Also, Jess has generously offered to giveaway her memoir to one reader who may need to hear here message of life, love and hope after loss. I’ll have the rules posted on my IG post.