It’s a rainy, dreary day in Nashville Tennessee, a day at Vanderbilt Children’s Hospital, a day like all the other days for the past two weeks; a day in the PICU. I’m watching my husband comfort our 15 year old son Lucas, who recently endured his third surgery and now Ryan, his dad, is hunched over the hospital bed, hunched over the pic line, the tubes, and the oxygen pumps, hunched over in the midst of many skilled hands, hunched over with one objective in mind: to bring Lucas a degree of comfort in his time of distress.
Lucas had a stroke in utero and was born with hydrocephalus. He underwent surgery at three days old and continues to exceed all expectations. He has profound special needs, such as being primarily non-verbal, incontinent, and requires constant assistance, but he has remained extremely healthy for 14 years—until December 2019. Now, complications and infections have led to numerous hospital stays which is a difficult reality for our blended family of ten.
You see, this ain’t our first rodeo with hard times or ICU visits. In 2010 Ryan and I lost our spouses to cancer, and when we met and later fell in love, I was a mom to four young children, including 5 year old Lucas, and he had three kids. We married in 2011 and adopted all seven in 2013. Yes, Ryan is Lucas’s adopted dad.
Blending the two families brought numerous challenges such as: grief, different parenting styles, traditions, and insecurities, to name a few, and adding Lucas’s unique needs only intensified the situation. From the onset of our relationship, Ryan embraced and accepted him. He asked questions when he didn’t understand or tried to decipher what was needed in times of confusion, and it’s been Ryan who has primarily stayed beside him during his hospitalization, refusing to leave because his son might need his comforting touch.
Through our nine years together, Ryan and I have learned a few important skills—life hacks, some might say—while navigating the complicated terrain of special needs parenting in a blended family. Here are seven practical ways we’ve been able to make it a successful endeavor (most the time):
Relationship care. There’s an old adage—the best gift we give our children is a happy marriage, and this won’t occur without an investment. In the midst of the blended chaos, we prioritize the marital relationship. For us, this includes a quick prayer together in the morning and watching Netflix after the kids go to bed, but our top priority is a weekly date night. If money is tight, we have a home date! We hire our daughter to babysit and enjoy a pizza on the patio. When our relationship is a priority, our family is secure, and when we aren’t prioritizing the marriage, the family suffers.
Self-care. It has taken me years to embrace this concept, but I find I am more patient if I allow thirty minutes a day for a walk or a yoga session. These activities reenergize me; maybe for others it’s a good book or gardening. Whatever it is, make time for it. We must invest in ourselves to be the best version for our families. Part of self-care includes finding respite—a break from special needs. I know: somewhere, somehow. It’s a battle for us too, which is why we started The Lucas Project, a non-profit that provides respite to special needs caregivers. Other options for this hard to find resource might include local churches, the YMCA, or schools. If you can’t locate a service, send us an email! Maybe we can start a chapter where you live.
Respect each other’s opinions. As the biological mom to Lucas, I’ve learned not to dismiss Ryan’s opinion. He sees certain issues with clarity and with a different perspective because he’s not the biological parent. This parent often offers an objective solution because they are less ruled by emotional attachment, and this can be an asset. New parent: ask questions and recognize that you may miss something because you haven’t been in this child’s life from the beginning.
Cultivate family traditions AND sometimes your typical kids need time without special needs. In our family we prioritize dinner together, family movie nights and picnics at the park. Lucas participates in most of these activities, but we don’t include him in everything. This decision works for our situation, but is personal for each family. Lucas doesn’t tolerate overstimulation or new environments well. For years we included him in everything—we included him for us—so we didn’t feel guilty about excluding him. We’d bring him, and he’d scream ALL DONE! which meant I don’t enjoy this and want to go home. As we catered to him, our other children didn’t get the attention they needed. We decided it was okay to enjoy some activities with only the typical children and occasionally employ a caregiver for Lucas.
Encourage independence. Lucas’s needs require a lot of energy, and Ryan and I are often tired and need help. Our typical kids don’t need as much assistance and have learned basic life skills such as laundry, loading the dishwasher, or after-dinner chores. They are also willing to help with Lucas by feeding him a meal or taking him for a walk. I’ve had to lower my expectations of perfection and allow them the skill of independence for their sake and mine—and give them an allowance!
Find community and help. We realized during Lucas’s hospitalization how desperately we needed community. Life is hard, but life without people who care and offer help, who provide a hot meal along with a prayer or a shoulder to lean on, when that’s what we all need—is much harder. I can’t stress this enough. Find people who understand your struggles and offer support or hire help if possible. What don’t you enjoy? Housework? Cooking? Laundry? Maybe consider the investment for peace of mind. Teenagers are awesome sources of affordable labor. Ours are always looking to make extra money, and we are happy to hand off laundry, cleaning, or child care. It helps us and puts a little change in their pockets.
Practice gratitude. When we turn our focus to the bigger picture—our beautiful family, a redemptive testimony of God’s faithfulness, our problems fade as we practice thankfulness. We can retrain our brains through gratefulness and operate from a base of joy instead of bitterness. “ As a man thinks in his heart, so he is” Proverbs 23:7. Release the insignificant, focus on the blessings and move forward in gratitude.
Blended is a difficult reality and special needs only adds to the stress. Submit your family to the Lord and daily rely on His wisdom as you walk this path in obedience. Step by step and moment by moment, be thankful for His grace and abundant mercy, and then practically speaking—book a sitter, make a reservation and take your spouse on a date!
Jess Ronne is an author, speaker, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing respite opportunities for special needs families. She and her husband Ryan live in Tennessee with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga she can be found at www.jessplusthemess.com or Facebook/Jessplusthemess or Instagram/Jessplusthemess.
