I am so honored and amazed at how many of you offered to share your stories about special needs with the world. Thank you from the bottom of my heart. The only way we see change and more resources for our unique situations is to raise awareness by telling our stories. I thought I’d go first to offer a bit of an introduction, and I plan on publishing one of these stories a week until I run out – which may be never! How awesome would that be? If you are interested in sharing your story in the future, please email [email protected].
Let’s start at the beginning. Introduce yourself. Where do you live? What do you do? What does your current family structure look like?
I’m Jess Ronne aka Jess + The Mess. I live in Tennessee about 30 miles outside of Nashville with my husband Ryan and 8 children who range in age from 4-16. We are a blended family as Ryan and I both lost our first spouses to brain cancer in 2010. He had three young children and I had four. We met, married, adopted each other’s kids, and had one of our own. I’m an author (Sunlight Burning at Midnight), blogger www.jessplusthemess.com, Non profit director of The Lucas Project, and teacher at a local community college. Yes, I thrive on busyness 😊
When did you first learn that your child would have special needs? Pregnancy? Shortly after? How did you feel? How do you feel now?
I learned at my 20 week ultra sound appointment that the baby I was carrying had a stroke. I was devastated. The doctor suggested termination, but our faith told us to carry on and trust God’s will for our unborn child. I’m not devastated anymore and appreciate everything I’ve learned and experienced through Lucas, but I do feel overwhelmed many days with how difficult it is to raise a child with profound needs. I also feel honored to be able to change the world in some small way through offering respite days which never would have become a reality without experiencing a child with special needs.
Can you explain your child’s specific needs and how these affect his and your day-to-day life?
Lucas has hydrocephalus and chiari malformation. He continues to progress which is fantastic. He’s very healthy and has never been on any meds (other than antibiotics, etc). He relies on assistance for every aspect of his life – feeding, bathing, getting ready, mobility, etc. He does have limited mobility, needs assistance, and definitely has a mind of his own. His curiosity has been difficult as he’s grown older and goes through puberty. As happy as we are that he continues to progress, he is rarely content to sit and watch a video or listen to music anymore, and he can’t do things independently so that makes it exhausting. He is also not really verbal (he has a few words but often the word doesn’t mean what it means in his head) so it’s always a guessing game trying to figure out what he wants. For example, he’ll holler “Veggie Tales!” repeatedly which seems like it would be easy to determine that he wants Veggie Tales, but in his mind it doesn’t mean Veggie Tales. It means I don’t like what I’m watching so please offer 500 additional options until I figure out what I want to watch.
What are the biggest worries you face for your child? What are your biggest goals?
I worry about his future. I have this dream facility in mind that I hope and pray we can find for him (and afford!) I want him to live a long, happy life engaging in lots of activities. I worry that he’s often not stimulated enough because we’re tired and can’t constantly indulge his desire for activity. I also worry that as he gets older and stronger he may inadvertently hurt someone.
Do you have a transitional plan for your child when he/she ages out of school? Can you explain what this looks like?
Ideally, we would like that dream facility by age 20/21. I don’t want to take care of him forever, and I feel guilty even saying that, but I don’t think it’s fair to my other children who will go off and have lives of their own. I also want to be present for them and (hopefully) my future grandchildren. I will take care of him as long as I have to, but it wouldn’t be my ideal (or his) long term. In my mind, the perfect facility offers 24/7 care, tons of activities for engagement, field trips, loving individuals and safety. Hopefully we find it.
I’m a big believer in self-care. What are you incorporating to address this need?
I love walks, yoga, patio time with my husband, a good book, Netflix cooking shows, and long chats with a girlfriend.
I also believe breaks are vitally important for special needs caretakers and this is how The Lucas Project serves the special needs community. Are you able to get a break occasionally? If not, what hinders you from getting this?
Yes. We are fortunate that we have teenagers who can watch Luke for a few hours while we grab a bite to eat or take a walk at the state park. We try to make this a weekly priority. Also, all of my kids are in school now which is huge! I work out of the home 2 days a week but the other three days are pretty quiet, and I’m able to incorporate self care if needed.
I believe in seeking joy even when times are hard. How has being a special needs parent brought something positive to your life?
I’ve learned so much from Luke and other caretakers. Special needs caretakers and their kids are the most resilient, hopeful, patient, and long-suffering group of people I’ve ever met and I’m honored to be a part of it.
How can people best approach or respond to your child? Is there something you wish other people understood? L
Luke doesn’t really like people all that much! He’s kind of like an introverted, grumpy old man who just wants to do what he wants to do without anyone bothering him. He’s tolerant of people but doesn’t necessarily have the emotions towards them outside of wanting them to do his bidding. I wish people were more tolerant of his out bursts and uniqueness. He’s doesn’t care if people stare and I’m over it as well but ask the questions if you have them.
Finally, what is one takeaway you want others to understand about being a parent to a child with special needs?
My focus is self care and breaks. Special needs parents are usually overwhelmed and exhausted. If you know a family dealing with special needs, and you have the ability or resources to make their life a little bit easier, please offer. They probably need it desperately.
To help fund respite care for a special needs family, please donate at www.thelucasproject.org.