When I was in the seventh grade, my sister was diagnosed with Type 1 Diabetes. We noticed she was quite thirsty lately, waking up at night to use the bathroom. In hindsight she had gotten very skinny. My mom took her to the doctor one morning and by the afternoon she was admitted to the hospital. I was scared. I recall wondering if my sister would die. I remember sitting in a meeting with the dietitian learning about carbohydrates, fats and proteins. We learned what to do if her blood sugar became too low. My best playmate had to prick her finger many times a day and learn to give herself shots. Now 38, she has run a marathon, played college sports and just given birth to her second baby. She has valiantly lived with her chronic illness. She’s done such a good job, that most of the time it’s easy to forget Type 1 Diabetes is ever present in her life.
I never saw my sister as sick or as someone with a chronic illness. I just saw her as my sister. My parents embraced her illness by learning all they could, changing the family diet (for the better) and included me in that process. We learned to live WITH Type 1 Diabetes. My sister has the most incredible attitude and fortitude. She is now a dietitian and has worked at some of the most premiere hospitals in the country focused on nutrition and care for preemies and children. I’m inspired by the way she lives. I’m thankful for the honest approach my parents took to her illness.
Fast-forward 2.5 decades. I’m parenting my 6-year-old son, Ethan, born with complex congenital heart disease. He’s been in the hospital for nine months. My son Blake is 3 years old. We have been living in Boston for the last nine months, though home is outside Chicago. Blake has been splitting time between me, my husband (who commutes back and forth to maintain his job), my family in Ohio and our nanny. On a typical day, my husband and I switch hospital duty every few hours. We typically meet on a corner and hand Blake off. One heads to the hospital with Ethan, the other to our home away from home with Blake. Each day Blake reaches his hand out around my neck, and then my husband’s, he pulls us all together and says “two”. It’s his way of telling us he wants us to be in the same place together. We both feel guilty, but we are doing our best. Ethan needs us. Blake needs us. A cardiac intensive care unit is not a place for Blake day in and out, though he spends lots of time there, too. We are just trying to be a family amidst illness.
One day I’m sitting in Ethan’s room and a woman walks in. She’s a child psychologist. She’s checking in with me about Blake and Ethan. I tell her it’s painful for me because Ethan and Blake were so close. They used to hold hands across the back seat as I drove the car. Each morning and evening they would hold hands and snuggle together on the couch as they watched a show. Now they are separated, and I felt resentment building between them. Blake was jealous of all the attention we needed to give Ethan and Ethan was jealous that Blake got to leave the hospital with us. I also told her that it felt like everyone wanted to take Blake to do fun things and to try to “make up” for this awful situation are family was in.
This woman turned to me and said, “this IS happening to your family”. I will never forget that statement. “This IS happening to your family.” She went on to say that it’s easy to want to run from it. She told me our brains do need balance so it’s good to balance Blake’s experiences, but bottom line we needed to be honest with him about what our family was facing. That was some of the best advice I ever received. I promised myself that day I’d be honest with Blake even if it was hard. And I’d wrap that honesty in lots of love. I also knew that committing to honesty meant I needed to be ready to answer hard questions in a way that was age appropriate.
I hated that my son, Blake, had to face Ethan’s illness. I hated that his best playmate had been ripped from his daily life. I hated telling Blake that Ethan died on that hot June morning. I wanted to protect Blake from the pain of death. In a clear-headed moment I hoped that maybe in someway this experience would shape Blake in a positive way. I hoped it would make him more resilient. I hoped he would be aware of children with special needs, those who couldn’t do all the same things he could. I hoped it might even shape what he’d do with his life. No guarantees, but I hoped.
In the midst of Ethan’s long hospitalization, I gave birth to Chase. Now 4, he talks openly about Ethan. He frankly tells his friends and teachers that Ethan is in Heaven. Blake has declared he’ll be a scientist and try to find cures for diseases. He’s organizing a race (with our help) to support the foundation we’ve started in Ethan’s name. He wants to help others. I’m seeing gifts emerge.
Now we have Bodey, our 18-month-old son recently diagnosed with congenital muscular dystrophy. Bodey is not walking or talking yet. My boys ask me if he will. I answer honestly, “we don’t know”. I want to say “yes, honey, of course he will,” but that’s not honest. I keep that promise of honesty wrapped in love. Blake and Chase love Bodey. When they lay on the floor together, all three can be found laughing. At then end of the day they are just brothers. They are bound by birth into our family, not by abilities or health. We continue to learn to accept things as they are, not as we wish them to be.
Recently I went to visit a friend whose son, Joey has been diagnosed with GM-1, a degenerative disease. Joey’s family is going through the painful process of watching him decline. As I was leaving their house, Joey’s older brother David said to me, “Joey is my brother”. His simple statement struck me. David sees Joey as his brother. Bound by birth, not by Joey’s illness. His wise statement reminded me of Blake, and of my boys. They are brothers first. They don’t first see the illness. I know that’s truth, because that’s how I see my sister.
Being honest with our kids about illness and the ugly parts of life is hard. I have reflected on why it’s so hard to be honest. I think it’s because we are forced to be honest with ourselves about the reality of our family situation and that’s painful.
Honesty wrapped in love and reassurance gives siblings a compass as they navigate a sick brother or sister. It gives them a compass as they navigate life. No illness can rob our children of what they are first – siblings. The love they have for each other wins, it’s that legacy of love that remains. As parents, we get to foster this love by the way we approach what life brings. Not easy, but I hope my boys look back and see that the love we have for them – and our honest approach to illness – might inspire them to use that love and their story to impact this world for the better.
Jessica Lindberg is the mother to four boys: Ethan, Blake, Chase and Bodey. Her oldest son Ethan, died in June of 2012 after a valiant battle with congenital heart disease. She is deeply thankful for the gifts that have come through facing the chronic illnesses of two of her boys. Jessica is the founder of The Ethan M. Lindberg Foundation. She is a writer, speaker and advocate for children and families facing congenital heart disease. You can follow her on Instagram or on her blog at www.jessicalindberg.com. You can follow along with Joey’s journey with GM-1 here.
This is Jessica's second post for Wish Nation. Her first post was about parenting children with special needs.