One of the hardest parts of Willow’s diagnosis was how to tell our girls. How did we tell them that their sister is dying?
Our middle daughter Jenna is 10 years old. She and Willow are 7 years apart, even more if you consider Willow’s developmental delay. Jenna is like a second mother for Willow. She dresses her up, she plays with her. They make forts and baby beds. Jenna loves dolls and doll accessories; her room is like a museum showcasing each of her dolls and their belongings. Lots of little shoes and clothes, a doll house.
Willow bolts for Jenna’s room whenever there is an opening and picks up the little toys. It’s a forbidden paradise for her. Jenna doesn’t want her in there. Like most big sisters, she doesn’t want her little sister touching her things. In this way, they are very typical sisters.
Jenna knows her sister is dying. We kept if from both Jenna and our other daughter, Kylee (14 years old), for the first couple of weeks after we received the diagnosis. Willow was diagnosed with Multiple Sulfatase Deficiency (MSD) in May 2016. We waited until the end of May so that both girls could finish their classes, but they knew something was going on. My husband and I whispered and spent a lot of time in our room talking. We spoke in code when we were on the phone or left the room. We cried frequently, we yelled often, and there was a general tone of distress from their dad and me all the time.
We struggled with how much to tell, how much detail to go into. Should we say she is just sick and needs to go to the doctor? It was constantly on our minds. We knew we shouldn’t burden them too much but if we were going to go on a fundraising campaign to fund a treatment, we couldn’t keep them in the dark and then have a stranger say something by accident. Our local paper and television station were going to do stories.
After much consideration, we knew in our hearts that we needed to tell them.
We finally sat down with our girls and had a family meeting at the kitchen table. We explained that Willow was sick and had a very rare illness that made her grow slowly in both her body and her brain. There isn’t a lot known about it because very few children have it. But there was hope, a dad in Ireland had found some treatments that could be further developed and we were going to fight to get them done in time to help their sister.
Jenna asked if Willow was going to go to the special class at her elementary school. Would she ride the special bus? She remember when the third graders where able to help the special needs kids. She understood that it was serious but knew that “momma would fix it” and find a treatment.
We are struggling with making it through each day and very scared about the future. This is the advice we have gathered from others who have dealt with sibling illnesses and what we try to keep in mind.
Tell Your Whole Family Right Away
Tell them whatever you know. Kids are way more aware then they appear. They absorb everything and when we keep things from them, they are scared to talk about it and ask questions and show emotion. These are the things that they need to most express in such a stressful situation.
Get Therapy Right Away for Every Family Member
I started seeing a therapist first and waited to take Kylee to see someone until she started to show signs of depression. By then she had weeks of work to learn the tools to pull herself out of it. Jenna is struggling with irrational fears of bugs, and open windows in the cars. She doesn’t want to go to gymnastics, she is very specific on what she wears. She is developing some OCD characteristics. We are watching her and I get parenting advice from my therapist on how to handle situations.
It’s Absolutely Okay to Cry Often
At first I had a hard time with this and tried to keep it in, but emotion comes out whether you like it or not. We cry everyday, one of us gets hit with emotion at some point during the week. While we are helping Willow on the special school bus or giving her hugs and kisses or telling her night, night. We cry when our community helps us and when our friends give us hugs and when we tell Willow’s story. We cry and we hug and tell each other that it is okay to be sad. We express it and we help each other through it. We cry together if we need to.
Have Fun and Laugh
This is so hard for me, especially now. My momma bear instinct and personality tells me, “There is not time for this, we need to find a cure, not have fun.” But we follow the professional’s advice: we play board games, go to the movies, and try to make time for family time. The kids play video games and go to their friends’ houses. I struggle daily with this, but life continues to move forward.
Pick Your Battles
This is tough, too. Our family is in a crisis. If Kylee gets a C when she normally has straight A’s, I remind myself that it will be okay. If she gets an F on a test, it will be okay. If she doesn’t make her bed, or forgets to do the dishes, it’s okay. We are all distracted, stressed, and running on fumes. We forget and make mistakes. Our house is sloppy and there are toddler toys everywhere. We choose to accept that this is okay. Because it’s being together that matters.
Live in the present
It’s easy to get overwhelmed thinking about what will happen when Willow gets worse. How will we care for her? How can our family hold up when we are barely keeping it together now? I can throw myself into a tizzy and go down a black hole of self-pity in only a few minutes. Doc says to live in the present and don’t worry about the future. I don’t have a crystal ball, and worrying is not helpful. When I hear about other kids with MSD, I have to reel my mind back in and enjoy the moments so I don’t dwell on what our future could look like.
This is unchartered territory for us, and we are learning as we go. Thank goodness each of our kids is flexible and strong. I remind myself that character is built from the trials we go through. Our kids will forever be kinder, more thoughtful, and nicer people because of Willow.