We Can Do Hard Things: Kristi Kimball

 

Meet Lila.

This sweet girl was born with an incredibly rare, genetic and terminal condition called Vici Syndrome. The average life expectancy is around the age of three. When Lila was born, the gene responsible for her condition hadn’t been discovered yet, so genetic testing couldn’t tell her parents what was happening. Lila’s mom, Kristi spent thousands of hours at the computer researching medical journals and obscure articles. When Lila was just 16 months old, her mom finally found a syndrome that seemed to match all of her daughter’s symptoms. She googled images and found what appeared to be her daughter’s twin brother on Facebook. After talking with this boys parents, and working with doctors in England, they were finally able to give Lila a diagnosis. Lila’s parents learned they were both carriers of the gene, (which is extremely rare) and the doctors told Kristi and her husband all they could do was love Lila and make her as comfortable as possible. Lila lived for nearly four years and changed her family’s life forever. I felt Lila’s mom said it beautifully when she said,

I asked Lila’s mom, Kristi, a few questions which she answers below. 

 

Q: Over the years, I’ve heard many different words used, for example, special needs, handicapped, or disabled. In your opinion, what is the best term to use?

A: “In my immediate circle, people use the term special needs. I think some people are offended by disabled or handicapped because it tends to focus on the negative. Special needs is a gentle way of saying something is different about our children.”

Q: What were some of the most meaningful acts of kindness performed for Lila or your family?

A:  “A friend took photos from my blog and made a silhouette for her birthday. This was unbelievably kind since Lila could never sit up. I thought a silhouette would never be a possibility, but she worked with an artist and spliced two photos together to make it look like she was sitting up.”

“A few more that we appreciated were:”

• A friend made arrangements for a videographer (she was in the wedding business) to come and video our family and take footage of us all playing together.
• A friend sent Lila a jersey and hat from her sons little league baseball team with a picture of the team and told Lila she was an honorary member.
• I would receive letters and cards telling us how much Lila meant in their lives.
• Any visit while we were inpatient. Lila spent a lot of time at the hospital, and it gets quite lonely there.

 

Q: Before Lila passed away, what were some of the most helpful things said to you?

A: “Becoming a special needs parent was not an easy road for me. I was angry, shattered, depressed, in denial and deeply frightened of the future. Trusting in God’s path and taking it all in faith came much much later.  It was hard to see that being Lila’s mom was going to be the biggest blessing of my life; at first it just seemed like such a tragedy and a cosmic joke. I look back and wonder how I made it through that part of my life. I can see now that I wasn’t easy to be around then. I cried at the drop of a hat and would give angry retorts at well meaning comments.  I am grateful for the people who stuck it out and were willing to take my anger head on. I was grateful for the people who were more than willing not only to offer words of comfort but to listen to my fears and not judge me.”

“I appreciated the people who were completely honest. I felt relieved when someone would say.” I have no idea what to say, I just love you and love Lila.”  It made everything so much better. Then I wouldn’t have to try and not take offense by some well-meaning comment, or try and assure them that I was fine, because I wasn’t. We could just both acknowledge that I was going through one of the worst things in the world and that truly nothing anyone could say would help.”

Website: Kristi blogs {here}.

*Note: This person’s experience is their own, and doesn’t always represent someone in a similar situation. Please be kind.

Wondering what this post is all about? Click {here} for the intro post.