Words with weight.

She was part of the conferring ob/gyn residents gathered outside my hospital room on the labor and delivery floor where I would spend weeks praying to get to a safe delivery date for my trio. I imagine that she had no idea how loud she was speaking or how clearly her voice carried. I wonder if she ever gave her words a second thought.

"Why are we working to stop her labor? I wouldn't want cerebral palsic kids. She should really just deliver and let them die."

I was 23 weeks pregnant. I had been on bed rest for a month already. In the hospital for three of those -- without even wiggling a toe out of the bed. I had had multiple ultrasounds and every single time the personalities of these three little bitties was clear. Benjamin (Baby A) was the ring leader and very busy using the other two as his punching bag (To be fair, they were literally on top of him). Mason (Baby B) was a bit private and quite the prankster. Some days he hid behind his sister so that finding him was a huge challenge. And Claire (Baby C) liked to move and groove, wiggle and see how far away from those pesky brothers she could get (Trust me, there wasn't much personal space -- she would get up and as far under my rib cage as possible!).

Young ob/gyn resident didn't know them. I knew them. I was also just arrogant enough in my faith that I thought Cerebral Palsy was not something we would deal with. I mean, I was praying these babies to a healthy delivery date. (But that is a whole different blog post.)

Baby A, B, and C will turn 22 years old this year. Obviously, I haven't forgotten the words that carried into my room on that L&D floor in Chicago.

I can hear her audibly today.

I could hear her audibly 21 years ago when the doctor diagnosed two of my three with Cerebral Palsy.

And yet, if you have met me, you know that even though her words echo, I don't give them worth. Benjamin, Mason, and Claire bring more to this world than even I ever imagined. I chose life for them. I would choose life again. And again. And again. And even knowing that the boys would in fact have CP, I would still lie in that hospital bed for 10 or more weeks and do everything every doctor told me to do to get all three of them to a healthy delivery date. I choose life.

But the thing is, even though the words don't have worth, they do have weight. And I have carried them. They feel heavier some days than others.

They felt heavy the day the mother of the family sitting in the booth next to us took one look at us, grimaced towards us and then said to her family "Oh bless their hearts." It wasn't a blessing.

They felt super heavy when I wanted my trio to sing in the preschool church choir and was told as long as I stayed and helped they could be a part.

I wasn't sure I could bear under the weight the Sunday that we showed up at a new church and the usher pointed to Benjamin (an 8-year-old Benjamin) and said "You should have gotten here earlier with that."

But they feel the heaviest when people complain about having to add accessible parking spaces, or ramps. They feel heaviest when people block loading zones, and when we arrive at church and can't find a ramp.

Here is what I need to say: Yelling about the importance of choosing life is just that -- yelling -- if we don't also figure out how to minister to families like mine. If we are going to be indignant about laws that allow for the termination of pregnancies when differences are found (and don't misunderstand, I am upset about those laws), then we must also be indignant when our church doesn't have a Special Needs Ministry. 

We must also be indignant when the family rolls into our church and can't find a place for the wheelchair to park and the family to sit together.

We must also be indignant when anyone insinuates in any way that people of faith do not have children with medical needs.

We can't ignore families with challenges. We can't make them our projects either. We have to stand with them -- point them to the ramps, then pull a chair up beside them.

The triplets were 12 when they attended jr. high camp with our church. They spent time watching their friends do rock-climbing, Frisbee-throwing, tossing the football during free-time. We were getting close to the end of the week, when a couple of the men approached me (Of course, I was chaperoning one of the girl cabins so that I could dress Benjamin every morning, etc.). The men had been watching the boys and wanted to do something special for them to make up for the fact that so many of the activities had been inaccessible. They wanted to give them a ride down the zip-line. The zip-line, though, was at the top of a big rock wall. 

It didn't seem possible to me. Those men had a plan. They harnessed the boys in and then used a pulley system to pull them to the top of the rock wall. They heaved, and tugged and pulled them up so that they could fly down the zip-line. It was exhilarating.

And on that day -- on that day, I didn't feel the weight of those horrible words at all. Rather, those men could whisper and I would strain to hear anything they said. Their words have meaning, weight and worth because they didn't just share a meme on social media -- they literally worked to support us and our differences. They ministered to us well.

It is time to roll up our shirt sleeves and start tugging people to the top of the rock wall. It is past time.

Oh, and I should tell you: On April 18, 1997 when it was clear we were going to have to deliver the triplets, those ob/gyn residents were clamoring to be in the operating room -- triplets are not an every day thing, after all. My attending physician let me choose who got to be part of the delivery. Two guesses who had to wait in the hall....

When we feel unwelcome at church.

I read this article yesterday after my 17-year-old daughter posted it to her Facebook page. It resonated with me. It resonated deep in a place that feels the pain the author writes about. Reading the comments my sweet Claire was receiving made me want to address the topic of church and the special needs family. But the inevitable pain of delving into this particular subject matter was something I strongly wanted to avoid. So I shared the link to my personal Facebook wall and tried to walk away. My hope was that the sharing would be enough. The sharing would alert my friends that this is a real issue. And I could leave it at that. Walk away. Not share personally.

But the comments have rolled in. People have shared the link on their walls. And people have commented.

Again. And again. And again I have read that yes, the church has been a painful place for Mamas with children who present with all manner of special needs. The gamut runs from Autism and Downs Syndrome to Cerebral Palsy and Spina Bifida and everything in between -- families with needs as diverse as the children they love are all facing a common problem: the church does not know what to do with us.

So I am sitting down to address a problem that I have addressed throughout the last 17 years over and over and over again. I sit here typing furiously knowing that even last week as I drove to my church, the echo in my head was that "This is hard. Church is hard for people who hurt."

Please hear me when I say that this is not even a commentary on our current church home, this is a commentary on what if feels like to experience pain from the place you expect/need/desire to find comfort. I know we can do better. I know Jesus intended for us to do better.

The first two years of the triplets' life we were infrequent church goers. Oh believe me when I tell you that this was way way way outside what my Bible-belt-bred heart thought was "OK" but it was our reality. The trio were born so very early, we had to protect their lungs first and foremost and a church nursery in Chicago in the winter was not the place to do this!

But beyond that, I knew we overwhelmed everyone in the nursery department. If they expected six children and I walked in with three that threw their numbers and their worker to baby ratio completely off. I saw it in their faces. I heard it in their voices. We were not unwelcome but we were not welcome.

After sitting on the back row, taking turns carrying babies for emergent diaper changes for three weeks in a row, Wade and I decided we would do better having Bible study at home where you know, we might actually read an entire verse at nap time!

When we learned the boys had Cerebral Palsy I had lost my place of fellowship due to that lack of attendance. It was an empty lonely season for Wade and I as we tried to find the spiritual sustenance for facing the frightening diagnosis outside of the church.

We moved to Minnesota right after the trio turned two. The first church we visited was one of the biggest in the small town of Rochester. The nursery was labeled Creepers, Crawlers and Walkers. I tried to explain that Benjamin, at two, didn't creep, crawl or walk but that he was so bright, so very bright he needed to be in with the two-year-olds. It was a long morning as I was sent from person to person to explain and get "permission". I left heart-sick. Sad. And knowing that I could not explain this every single Sunday. I can handle a lot but this explaining was more than I could bear.

It became my goal to find a tiny church -- one where every one would know us immediately and I would not have to explain the wonder of my trio. We found one that welcomed us. Furthermore, the couple -- Mrs. Patti and Mr. Norman -- who taught the  two-year-old Sunday School class were precious to my heart. Norman purchased a book on Cerebral Palsy to better understand the boys. He built a little step to place under Benjamin's feet so that my son felt stable sitting at the table with the class. I felt like we might heal.

But when they promoted to the next age group, the teacher was not as comfortable with my boys. We came to pick them up more than once with Benjamin laying flat on the floor while kids jumped up and over him. The teacher simply did not know how to handle him. I offered to help. I became an assistant teacher in the class and gave up my own Sunday School hour to help my children. I was ok with it at first.

Then someone told me about the Wednesday night programs. Oh, yes, I had loved Wednesday nights growing up, could my children participate? I was sent to the director to ask her opinion. (Read: No one says YES automatically to the special needs Mama.) Her reply: Of course they could participate.....as long as I volunteered to teach.

And guess what? I said ok. I volunteered. I spent the next couple of years teaching my children on Sunday mornings and on Wednesday nights. I now had no extra time for the adult Bible Study at my own church.

By the time the triplets were five, I was burned out. I was exhausted. And my feelings were hurt. I was completely empty. I loved serving others. I did. But I was used up and poured out. My spiritual and emotional tanks were past empty. I had nothing left to give.

Perhaps you have gathered that I am a strong-willed -- some might say stubborn -- human being. I love God. I love church. I love being in fellowship. I even love SERVING through my faith. I refused to give up. I refused to give in. I knew in my heart the Mrs. Patti and Mr. Normans of the world were out there and we would rejoice in them rather than get weighed down completely by those who didn't know what to do with us.

But y'all, the reality is wearing on a person. We moved to Phoenix and visited many churches. One told us that 8-year-old Benjamin would have to sit in the "wheelchair" section of the church while the rest of us sat on the other side of the sanctuary. I pointed out that he was a little boy and really wanted to sit with his family. We were told that "You should have gotten here earlier then. I can't help you."

Really? Really? We asked for the help of two of the other "greeters" before leaving the church prior to the start of the the service. I was in tears.

As special needs parents, our hearts hurt. We watch our babies be poked, prodded and operated on more often than we think we can endure. We deal with fears of the future, and obstacles of the present. We shop for wheelchairs while our neighbors buy basketball goals. We hurt. We hurt. And we need to be mad at someone for the hurt.

Anyone less stubborn than me -- less determined to FORCE fit her family into the church -- will not just keep pushing, begging and pleading to make a place. Anyone less stubborn will simply walk away from church and never look back. Anyone less stubborn will direct their full-out anger about the disability at the place that should be offering them healing, love and embrace.

And I know this. I know this because I have been told over and over and over again that my sweet special mama friends have walked away and not returned. I have witnessed the pain. I have seen the heartache.

I have walked away from different churches that could not meet our needs. I have tired of the search. I have tired of the push. And I am stubborn.

We have to find a way to make a change. Jesus did not come to save only the fully-able. He did not come to bless our lives in ways that mean we never  have heartache -- and that goes way beyond parenting a child with special needs. No, he came to give us the promise of life-everlasting, and THAT life will be without heartache.

But dear ones, we ARE meant to ease the troubles for our brothers and sisters. We are meant to cry with the hurting, rejoice with the blessed, and love the unloved. We can not be the hands and feet of Jesus if we only welcome those without pain into our midst.

And listen to me carefully, opening your arms to special families DOES NOT MEAN allowing those mamas and daddies to VOLUNTEER to teach! Do you hear me? Embrace them. Give them time to be encouraged and taught and loved on in classes for them with the absolute assurance that their children are precious in your eyes!!

Yes, Benjamin needed some extra help in his classroom. Mr. Norman, Mr. Max, Mr. Gary had no problem asking him questions about the lesson while his classmates did their little craft projects. It didn't stress them or him!

The teen volunteer -- our beloved Miss Christina -- was a special buddy to the boys one summer so that they could participate in Vacation Bible School. She did the extra things they required so that the main teacher did not have to. Wow. What a wonderful way to get your teenagers involved in service at your church WHILE serving a population hungry for church.

Bigger churches often have paging systems for young parents. Implement the same for your special needs parents. Mama will relax and be open to having her heart cared for if she knows you are going to reach her with any concerns for little Johnny.

Have a  volunteer on alert that your church can contact if a special needs family is visiting. Be ready to call on that volunteer to explain the services your fellowship can offer, as well as to take the sweet child and plug him in to his own class while Mom and Dad worship and experience. (Because a Mama who has to make sure her child is safe first and foremost, will not be able to worship in a place where the welcome team shrugs their shoulders and says, "Oh I think we have something in place....but I'll have to find someone to help you." No no no. The answer has to be organized. Thought through. Detailed.)

We can do better. It does not require much. A willing heart. Open arms. A desire to serve those easily forgotten and pushed aside.

Will you step up? Will you make a difference in the lives of families who NEED you?

Are you willing to be the blessing?