I will be honest, this blog post is hard for me to write. I am going to rely on my photos because I know my words will not be enough to tell you how wonderful and strong and loving the Snow Family is.
First and foremost the Snow Family is a loving, laughing foursome. Michelle and Steve have two bright children; Alex who is six and Juliana who is four. Alex is involved with Taekwondo, he carries around a stuffed Hobbes (from the Calvin & Hobbes Duo) and he loves making his younger sister laugh. Juliana is a princess- she adores her pink and purple princess room and loves wearing her pretty jewelry and too-too. If you ask Juliana what her favorite ___?___ is she will always answer “all of them” or “everything.” There is no runner-up in Juliana’s large heart. Michelle and Steve have built a home encompassed with love and it is so evident in their children’s faces.
The Snow Family for the past four years has faced a heart-breaking challenge. Juliana has a neuromuscular disease. In an email Michelle shared with me she wrote…
(October 2014) “Juliana is a bright, kind, funny and amazing girl who happens to have an awful, debilitating neuromuscular disease. Unfortunately, it has progressed. At the beginning of this year, she was able to walk short distances with a walker. Today, she can’t sit up without support. The worst part of her disease is that it affects her breathing and swallowing – these are the things that ultimately shorten lifespan in people with neuromuscular disease. Since her diagnosis, we’ve had more and more complications and challenges, including vocal cord paralysis (this makes eating/drinking risky), scoliosis (makes it hard for her to sit, can affect respiratory function), g-tube placement (surgical feeding tube in stomach to deliver nutrition) and right diaphragm paralysis (which means that her respiratory function is even more compromised).”
I share this side of their family story for many reasons. First to bring awareness to those that might not be familiar with this disease. Second to encourage you to pray for this family and all families that face similar situations. Third because this whole family is fighting the disease alongside Juliana and they are a stronger because they are together. I hope it inspires you to be stronger and connect more with your family and close friends.
Michelle later writes…
“If you have been around Julianna, you know that she is one of those kids – her spirit is incredible and resilient, and she is wise beyond her years while being delightful and funny at the same time. She is exceptional. I have struggled with this as well – because it always seems that the children who face the most serious illnesses are also the most special. If I had my choice, she would be more ordinary – and we would be able to see her grow up. …It’s not an easy time for us, but we are trying to trust God. It’s the only way.”
Juliana’s spirit is encouraging and contagious. Steve is strong and calm. Alex is a bundle of joy. Michelle is so loving and caring. Mix that with faith in God and you have a fierce foursome family team! (Plus they have a furry sidekick who adds in some entertainment.) This is the Snow Family…
Doernbecher Children’s hospital has been through the ups and downs with the Snow Family. Michelle said the staff there is so amazing. Last year Capturing Grace Photography did a year-long pledge to Doernbecher. I’ve decided to continue my donation to this hospital in honor of Juliana, The Snow Family and all of the wonderful families I have the opportunity of capturing.
If you are lead to donate to Doernbecher please visit this link: http://www.ohsu.edu/xd/about/dchf/index.cfm
I wanted to share this last part with you because I think it speaks volumes. I don’t think it needs my words getting in the way- so I’ll just copy this conversation that Michelle and Juliana had about heaven (February 2015). The love and faith that this family has is beautiful.
J: I hate NT (naso-tracheal suction). I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means that you will go to heaven, right?
M: And it probably means that you will go to heaven by yourself, and mommy will join you later.
J: But I won’t be alone
M: That’s right, you will NOT be alone.
J: Do some people go to heaven soon?
M: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
J: Will Alex go to heaven with me?
M: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
J: No, heaven is good. But I don’t like dying.
M: I know. That’s the hard part. We don’t have to be afraid of dying because we go to heaven. But it’s sad because I will miss you so much.
J: Don’t worry, I won’t be alone.
M: I know. I love you.
M: Yes, I love you madly. I’m so lucky
J: And I’m so lucky
J: Because you love me madly.
(For more information and to read about Michelle’s thoughts please visit The Mighty blog: http://themighty.com/2015/06/how-our-daughter-helps-us-face-our-greatest-fear/ )