Today we were featured on The Inclusive Church blog. Check out the interview below. Also, check out my friend Amy’s blog at http://theinclusivechurch.wordpress.com/2012/01/17/when-the-childrens-pastor-is-impacted-by-special-needs/.
Kristy Moser and I became friends last year when we were both slated to teach inclusion workshops at a children’s ministry conference. We immediately bonded on both a professional and personal level and have since worked together on a number of projects. For the past six years Kristy has served as the Early Childhood Pastor for Crosstown Children’s Ministry at Montgomery Community Church in Cincinnati, OH. Part of her responsibilities include overseeing the church’s special needs ministry, which serves 26 children and families each week. This past summer, Kristy gave birth to her second son, Wyatt. As you will learn below, along with Wyatt’s birth came a new and unexpected perspective on special needs ministry. It has been a joy and privilege to walk alongside Kristy in these early days, as she seeks to understand what it means to parent a child diagnosed with Loeys-Dietz Syndrome (LDS). And I am grateful that she has been willing to provide such a vulnerable and helpful interview for this blog.
Kristy recently launched her own blog, The Road Less Traveled, which has generated a flood of interest. You’ll understand from Kristy’s interview with me (below) why her new blog has been so well received. ~ Amy
AFL: Being on the staff at a large church naturally places you in a visible position. Was it hard for you decide to go public with your son’s diagnosis?
KM: When Wyatt was first born we knew something was going on with his health. From the very beginning we were public in asking friends to pray for Wyatt. But because we didn’t have all the facts, we had a more limited circle of people who knew all the details.
I also quickly learned that people weren’t sure how to react when I indicated that Wyatt was being tested for some potential problems. The interaction sometimes felt awkward because I didn’t want people to always feel pity for me or for my child. I soon discovered that it was best for everyone if I shared less while requesting prayer through Wyatt’s first round of tests. I then conveyed our intent to share more information after our family had the opportunity to receive and process the results.
Once we received and understood Wyatt’s diagnosis, we shared the information publicly. Since I serve in a visible staff position, a lot of people approached me with questions and offered prayers. And it has been therapeutic to talk about our experiences. Sharing openly has allowed me the opportunity to educate people about what our son was going through and for how they can specifically pray. I KNOW it is the power of prayer that has helped Wyatt thus far and I KNOW it is through these prayers that our family has been strengthened. Talking publicly has also provided a way for us to show how God has touched Wyatt and our family.
AFL: Why did you ultimately decide to start “The Road Less Traveled” blog?
KM: I have discovered that a lot of people have taken a quiet interest in Wyatt and our family’s journey. I thought the blog could provide a way for interested friends to receive regular updates on Wyatt’s tests, surgeries, doctors’ appointments, etc. and to know how we wanted to be prayed for. I prayed about the idea of the blog and began to feel God’s affirmation in using it as a tool to connect with other families. My vision for the blog is that it will become more of a support group for parents who have kids with rare conditions. I am looking forward to featuring interviews on the blog, highlighting other families with kids with lesser-known diagnoses. I would love to see the blog become a connection place for parents like us and for them to find support through an online community.
AFL: Before you ever gave birth to Wyatt you were overseeing MCC’s special needs ministry and even helping other churches to become more inclusive. Now that you have walked the journey of the last few months, how has this experience changed your perspective on special needs ministry?
KM: The biggest conviction that I have received since Wyatt’s birth is that in the past I did not show enough grace to families impacted by special needs. I thought that I understood what it was like to parent a child with special needs, but really I didn’t understand. In the past when a parent of a child with a difference or disability would come to church and have an immediate expectation for accommodation it would frustrate me. And when families were perpetually late for church (whether their kids had special needs or not) it would drive me nuts! Once you deal with something “extra” like we have with Wyatt you can better appreciate things from the view of these parents.
Wyatt has obstructive sleep apnea and when he was first born he had to be on oxygen even during a car ride. So, it literally took us 20 minutes to get him in the car before we started driving. Hooking Wyatt up to the oxygen and a pulse oximeter was pretty trying. So as we adjusted to the new normal, we started off being 15 minutes late to every appointment in the beginning. This experience gave me a whole new perspective for parents rushing to get to church on a Sunday morning. I realized that for many impacted families, it literally takes all you have emotionally and physically just to get the family in the car. Now I can appreciate how hurtful it would be to be turned away after finally arriving at church. As a person who theoretically could be a gatekeeper, granting or denying access to a children’s ministry, I will not be a hindrance for these parents. They NEED to get to church just like I NEEDED to get to church.
AFL: You’ve shared with me the tremendous interest and support that your blog has generated. Why do you think so many people have connected with your blog?
KM: Part of the reason is because I serve in a visible position at my church. We have a great faith community that has wanted to know what was going on with our newborn and how to support us. I also think that people are drawn to the situation because it involves a baby. So many people have said to me, “I didn’t know how you watched your baby go through that.” In addition, because Wyatt’s condition is rare, the blog has provided an avenue for people to answer their own curious questions about his diagnosis.
AFL: So often I am talking on The Inclusive Church Blog about autism or other more recognized diagnoses. Wyatt has a lesser known diagnosis. Tell us about Wyatt and what makes him unique.
KM: Wyatt was born in August 2011. He is our second son. He loves to smile, giggle, coo and eat –a lot! Wyatt has a rare connective tissue disorder called Loeys-Dietz Syndrome (LDS). LDS was discovered in 2005 and currently there are only 300-500 cases worldwide. Wyatt is the only individual in our area that has LDS (that we know of) and he is the only known case with his particular mutation. Because the exon that is mutated has never been seen before, doctors are not 100% certain how Wyatt will be impacted. LDS and Marfan Syndrome have many of the same characteristics and Wyatt may take on characteristics of either diagnosis. No two cases of LDS or Marfans are the same. So, for Wyatt his manifestations are an aortic root dilation, a cervical spine malformation, obstructive sleep apnea, tortuous arteries and vessels in his brain and heart area, widely spaced eyes (the whites of his eyes have a bluish tint to them), micrognathia (a small jaw) and arachnodactyly (long fingers), hyper-mobility and a mild case of low muscle tone. Wyatt also is very long and thin. He has long arms and legs.
AFL: Speaking as a parent of a child with a less recognizable diagnosis, talk a little about the unique experiences of a family like yours?
KM: I don’t really get tired of explaining the diagnosis because it is kind of therapeutic. It does get old when doctors want to get their hands on Wyatt because they have never seen anyone with LDS. Many times his doctors will ask if their physician friends can take a look at him because he is so unique. And I let them because I know in the end it might help someone else. But it does get tiring and he is my baby, not some test case! Medically we have to work very hard because no one really knows what to expect and it can be frustrating to “just wait and see.” Many times we have to take the initiative when we think there is something going on with Wyatt and we want him evaluated.
Other parents who have kids with special needs understand what we are going through. Regardless of whatever their kid has going on, they have been where we are. They have grieved, they have cried, they have seen sorrow and most, like us, have seen the joy too. There is a HUGE comfort in finding someone whose child has the same condition in a rare case like ours. On the Loeys-Dietz Syndrome Foundation website there is a forum set up for affected individuals and parents. In the beginning of our journey I wrote a post, seeking connection with other moms. Several readers contacted me, one has even friended me on Facebook. It is comforting to see pictures of her little girl, who is about a year and a half older than Wyatt. It gives me hope that one day Wyatt will be able to walk and do things like a typical kid. The biggest thing this mom did was tell me that we had a new family, a family who knew what we were going through and who would be there for us. This was huge!
AFL: Has your children’s ministry team had to make any adjustments to accommodate Wyatt?
KM: We have not taken Wyatt to our nursery yet. I feel like our nursery staff would be totally capable of taking care of him but I simply cannot compromise his immune system. As we consider putting Wyatt in the church care, we only anticipate adjustments related to his gross motor skills. He may need extra support when sitting or learning to stand and walk. Looking further ahead, I’m not really sure what adjustments will be needed for Wyatt.
Everyone on our church’s Next Gen team has been extremely supportive of our family and of Wyatt. They have shown us grace and love when we needed both. They have prayed for us and with us. I could not ask for a better team to work with.
AFL: Has anyone said anything that made you want to cringe? What are some ways people have provided appropriate support?
KM: People will always say things that don’t make sense when they don’t understand what is going on. Because Wyatt wears oxygen at night he has to wear these things on temples called tendergrips. They look like round band-aids. So, people will come over to look at him (like they do with every baby) and say, “What are those things on his face?” It gets somewhat old. So, I try to be nice and just explain it to them. Sometimes I just want to tell people to mind their own business and not worry about it. J Early on (before we had a diagnosis and before I launched the blog) one person emailed me with questions about Wyatt’s issues. After I explained some of the details, they responded that they had a special place in their heart for “kids like Wyatt, kids who were disabled.” While well-intentioned, those were hard words to read. Wyatt is not disabled in any way. I know that the person who reached out to me had the best of intentions – they just didn’t realize how they came off.
The best thing that people have done is to simply pray for us. People have brought us meals and visited with us. We have been so thankful for their acts of kindness. But prayer is honestly the most appreciated demonstration of love.