I have been MIA on my blog...story of 2012. Not because I have nothing to say, but because I never have the time to say it. I have been avoiding writing because I am holding out thinking I am going to catch up. The last post was from August. Since then, we have moved into our new home and time continues to push us into the next month. I wanted to get pictures up of September-January before I started writing in real time again but two computer crashes later...I haven't. Oh well, right?!
2013 has been a good year so far. I think a theme in my life these last two months has been, "what now?" "The house is complete, God what do you want to do with our story, our life?" I catch myself thinking about my life mission. "God, what have you called me to do? Where do I invest my energy and time beyond the never-ending task of motherhood and housekeeping?" I miss the diagnosis days. I miss being overwhelmed with passion to write. Desperate for the Lord to meet me in every moment and every day. I don't want to have the pain and sadness, but I want the peace that surpasses all understanding that came out of it.
I feel in my heart God is up to something big. I feel like it can't hurt to try to live a life that is bigger than myself. Maybe it is a "mid-diagnosis" crisis. The practicality of my days are actually much more demanding. Sanfilippo's effects are much more noticeable, yet seem more "normal." I guess our new normal has become, just normal.
I find myself struggling with the reality of ignorance in our churches and communities towards people with special needs and their families and I am increasingly more aware that I am one voice that can change that. I have started researching special needs programs for our church. In fact, I went to a conference sponsored by Joni and Friends called Through the Roof last Saturday. I thought I would be able to control my emotions...but I ended up a tearful, snotty mess during a break out session. The presenter was explaining her current church special needs ministry. When I asked what they did with the 11 volunteers that are "subs," I wasn't prepared for my reaction to her response.
Two Easters ago, we visited a church in Rockford that I thought of as our church away from church. When we went to check in Jayden-there were 6 volunteers behind the desk at this church of 5,000+ people. They even had a special needs ministry with a paid staff member. As I explained our children, I could tell the volunteer was uncomfortable with serving us. She promptly called in for back-up and the director came to speak with us. She informed us that Jayden would be a distraction in his same-age peer group. He was too big to go into a younger classroom. But, one of us (Jut or I) could sit with him in a special room while the other one went into service. The bomb was dropped. Damage done. A tidal wave of emotions began. At first, I was sympathetic to the ministry. I thought, I work at a church, I get it. But that soon left. I didn't get it. I didn't get it at all. Here was a thriving church with plenty of volunteers, and not one offered to care for him on Easter Sunday (a huge weekend where you naturally plan for first timers) so we could go to church. What if it was our first time? What if we didn't know Christ? You just rejected my child. You just told me we were not welcome. All I wanted was to worship with my husband on Easter Sunday and know my children were taken care of. The Director didn't even offer. Sick. I was just sick. So, we left. And, we haven't been back. Church should be the one place we ALL can go. My heart was sad and my tears and anger showed it. In the 5 minute drive back to my moms, I had a global ministry planned...as well as an angry letter drafted to the church.
Back to Saturday. When this lady responded, all the emotions from our experience came flooding back. She said their policy was a parent had to stay the first week with their child. Only a bad parent would leave their child in a nursery expecting the staff would be equipped to handle a special needs child without first observing them. As far as the 11 trained volunteers, they were not on-call to support a first time visitor. Then she asked other churches with current ministries, and they all agreed. "God forbid one of them smears feces on the wall", one added. My face was red and I was officially checked out of the rest of the session. That was until my dear friend Heidi, raised her hand.
I was embarrassed and so "unprofessional" I thought after flashing this church group with my privates. I was now, "that" weird lady at the conference. My body was cold and shaky. I apologized for my outburst. Although the presenter lacked compassion, something she missed while getting her masters in special ed, my verbal outburst did matter to someone in the room. A man from Faith Church in Dyer, IN heard me. Vinnie Adams. After the breakout was done, I was sitting at our table sharing with our children's director what happened. Vinnie approached me, got down on his knees, grabbed my hand, looked me in the eyes, and asked for forgiveness. (Insert tears.) He said he just didn't know. He never heard it from a parent's perspective. He was so moved by my sharing, he was changing the policy of his 5,000+ church that next Monday so their special needs ministry would be welcoming and excited about serving visiting families. God took something ugly and messy to change a heart that day. Two hearts actually.
It is no wonder families living with special needs don't go to church, and why they see God as irrelevant. We are a population that desperately needs the body of Christ. We need love. We need help. We need rest. We need the gospel of Christ. If families are not present in your churches you have to ask yourself why. I bet it is because they had a bad experience, or they don't feel welcome. But, we are valuable to the body. You have to see it like that. We are not pity parties, we are co-laborers. We serve, we love, we teach patience and compassion. Some of us even tithe! It just may take some different accommodations to get us there. Without a few people at Immanuel, we couldn't do high school ministry.
Our children's physical "brokenness" reminds us that we need a savior because we are all broken. People with special needs are just that, people. We all need the body, love, help rest, and the Gospel. The spirit of a person living with disabilities is a gift to the church. God's power is made perfect in weakness and that is evident if you choose to look.
It is so much easier is some ways for us to hide. But, parents of SN kiddos, we can't hide. Don't hide. As much as it hurts, people need you. They need to hear your voice and see your children. They represent everything that is beautiful about heaven. They teach us so much without ever having to speak. God bless people like Vinnie and churches that are trying, even if they don't get it right all the time. They are "lowering the mat" for us all.
Heck, I never get it right!
http://www.joniandfriends.org
Mark 2
New Living Translation (NLT)
Jesus Heals a Paralyzed Man
2 When Jesus returned to Capernaum several days later, the news spread quickly that he was back home. 2 Soon the house where he was staying was so packed with visitors that there was no more room, even outside the door. While he was preaching God’s word to them, 3 four men arrived carrying a paralyzed man on a mat. 4 They couldn’t bring him to Jesus because of the crowd, so they dug a hole through the roof above his head. Then they lowered the man on his mat, right down in front of Jesus. 5 Seeing their faith, Jesus said to the paralyzed man, “My child, your sins are forgiven.”
6 But some of the teachers of religious law who were sitting there thought to themselves, 7 “What is he saying? This is blasphemy! Only God can forgive sins!”8 Jesus knew immediately what they were thinking, so he asked them, “Why do you question this in your hearts? 9 Is it easier to say to the paralyzed man ‘Your sins are forgiven,’ or ‘Stand up, pick up your mat, and walk’? 10 So I will prove to you that the Son of Man[a] has the authority on earth to forgive sins.” Then Jesus turned to the paralyzed man and said, 11 “Stand up, pick up your mat, and go home!”
12 And the man jumped up, grabbed his mat, and walked out through the stunned onlookers. They were all amazed and praised God, exclaiming, “We’ve never seen anything like this before!”
