The Wangsness Family

Told by Stephanie and Jonathan Wangsness

We are an active family of four, if you include our family dog! We like to get outside, and we enjoy doing things together. We have a lot of love in our house! We say “I love you” a lot, which is so important to us.

We have extended family members who live nearby; however, we consider our whole family to be bigger than just us and our relatives. We have been blessed with many caregivers over the years, and they have all become part of our family.

These individuals are welcomed into our home and trusted with our daughter, Leksi!

We search very hard for compassionate caregivers who have the drive and empathy needed to be with our daughter. Although it has been very hard, and sometimes it feels like we are on an island, when we can step back and regroup, we realize just how big our family is.

Leksi received her diagnosis when she was seven years old, but our journey began when she was about twelve months old. Leksi wasn’t crawling, walking, or hitting her other milestones. We visited several of the top medical centers in search of answers, but test after test left us feeling uncertain and without clarity.

Finally, through a series of DNA tests performed by our geneticist, we received the answers we had been searching for and learned that Leksi has an STXBP1 Disorder.

Although we were relieved to finally learn of Leksi’s diagnosis, there had only been about 350 diagnosed cases worldwide. We love our girl, love that God has given her to us, and are so very grateful to be on this journey with her!

We found out about Jill’s House around the time we received Leksi’s diagnosis, when she was seven years old. Leksi is very social, and she craves being around other kids. She doesn’t have as many options for social interaction outside of school, though.

That’s where Jill’s House shines! While Leksi is at Jill’s House, she gets to hang out with her friends and enjoy time away from us.

Leksi can’t communicate what her favorite things are about Jill’s House, so we are immensely grateful for the written recap after her weekend stays.

Leksi loves music and friends, and we are always happy when we read that she enjoyed the music room, singing in the chapel service, and being with her peers.

When we first started taking her to Jill’s House, she would cry. But now, when she goes to Jill’s House, she is all smiles as she walks back to the POD by herself. We can see that she is happy!

We also can’t imagine what our marriage relationship would be like without Jill’s House. When Leksi first started going, we would call every couple of hours just to check up and make sure she was okay. But now, we no longer do that. We know she is safe and happy, and we are 100 percent comfortable, which means we can truly rest and enjoy our time together.

There is beauty in the blessing of having Leksi in our lives! Although caregiving has become more challenging as Leksi has gotten older, Jill’s House staff also see the beauty in her.

They don’t see kids like Leksi as a burden; they see them as blessings. We also hear from Jill’s House staff that they are honored to be with our kids. It is incredibly beautiful to know that Jill’s House loves our sweet Leksi and sees her as we do.

God gave us Leksi on purpose and for a purpose. Leksi continues to be a blessing to us and to so many, and we are grateful we get to share her with Jill’s House.