Why I Appreciated "Chick-fil-A Cow Appreciation Day"

Our day began with Chloe spinning too much in Lilli's therapy swing, crying, and throwing up from being dizzy. Then some sibling fighting, a messy breakfast, some potty training issues with Josh, and cleaning up all of that. Two baths later, we were back on track. Just another typical day here. Except that today, in this house that's usually filled with therapists working with two of my children, there was one highlight we were all looking forward to:

Cow Appreciation Day at Chick-fil-A.

We had plans to meet friends there for lunch for this fun annual event where everyone dresses up like a cow. I looked at the clock and figured we would need about an hour and a half to get all three kids and myself dressed like cows and out the door to Chick-fil-A.

I was wrong, it took two and a half hours. No helpers for Lilli here today. I explained multiple times to Josh that we were not dressing up like Spiderman to go to Chick-fil-A, we were going as cows, for Cow Day. We went through several Spiderman and cow outfit changes. Chloe cut out black spots and tails, and I dug up white clothes and made ears. Lilli was quiet and tolerated me dressing her in a white outfit and sticking spots on her. Finally, we were driving down the road covered in black construction paper spots with "Eat More Chikin" signs taped on our shirts and floppy black paper ears and tails. I took care to tape a barrette with cow ears on top of Lilli's head because headbands bother her.

When we pulled into the completely full parking lot, I was relieved to see one available handicapped parking spot for Lilli right next to the door. I parked and picked up the phone to call my friend. She is a new friend. She does not know us very well, and I knew I would need help getting these three inside. She answered her cell phone, and she was just telling me that they had saved seats for us when I glanced at Lilli in the rear view mirror.

She was having a seizure.

"Lilli's having a seizure, I gotta go!" I yelled into the phone and dropped it. I climbed back into the back of the van to her. Chloe covered her face with her hands, upset.  "This is terrible!" she said over and over as I tried to stay calm and tell all three kids that everything was going to be OK. Even though I was panicking inside, and I didn't really KNOW that everything was going to be OK. "Here, call Daddy," I said to Chloe. "I don't know how!" she wailed. I hit Jasen's number and handed her the phone. This was a mistake, because Chloe did not have the phone right on her ear. She kept saying, "Lilli's having a seizure, this is terrible" but she could not hear Jasen. I had to take the phone from her and tell him what was happening.

Even Josh was scared, I think because Chloe was saying over and over, "Lilli's having a seizure!" Josh started to say it too, yelling "Mommy, mommy!" Fortunately they were all still strapped in their car seats, so I didn't have to keep my eye on them as I pulled Lilli out and helped her.

She came out of the seizure, and I started to breathe again.

Now what? I wanted to get back in the driver's seat and drive back home. So many times I have been through this. It never gets easier. It is always just as shocking and scary. Just then my cell phone rang. It was my new friend. She had not heard me say that Lilli was having a seizure, because it was so loud and crazy inside Chick-fil-A  They were just sitting inside waiting for us. I explained that Lilli had a seizure, and she said she'd be right out to help. I told her we might not stay. I had to get my bearings because I was so overwhelmed. I gave Lilli a drink of water and she choked on it, coughing and sputtering.

"Wipe her mouth, mommy!" Chloe sat and watched her drooling sister with concern. I looked at Josh, who was still upset, and I said calmly, "Lilli is OK, we are all OK. Ok?" I fixed my headband with floppy black ears, and grabbed my cowbell. A bunch of black paper spots had fallen off of me onto the van floor when I was helping Lilli. I scooped a few up and slapped them back onto my white makeshift cow outfit. Really I did not even want to go in. My friend came out to the van and helped take Chloe and Josh by the hand to go inside.

When we got to the counter to order, I could not even think. Lilli was probably not feeling that great, and she was crying and shrieking with anger. After one ear-piercing scream, I heard a person nearby mutter, "Whoa." I know. It's loud. I'm sorry. I do not know what to do for her when she gets like that, except either leave, or push through it and hope and pray she gets happy again.

I had given her my phone to watch her favorite YouTube videos, and Youtube would not work. The sweet girl at the cash register was patiently trying to take my order between shrieks, and I said, distractedly, "Hi, um, ok, it's me... and three small cows. We'll take...whatever you want to give us." She laughed and nicely tried to help me through our order. If she only knew why I was acting so weird. I did not tell her that Lilli had special needs, but I'll bet she could tell something was up. My friend took Josh and Chloe back to the table, and I tried to balance the full tray and hold Lilli's hand. Lilli reached around in anger, shrieked, and grabbed the side of the tray, almost spilling it. I kept taking deep breaths. This was hard.

We got to the table, and Lilli was still upset. Finally I gave up on having them eat anything, and took all three of them into the play area. As soon as we did that, Lilli was happy. She loves being around other kids. She did not even climb up into the tunnel, she stood at the bottom and flapped her arms happily with a smile. I saw another mom I knew and we chatted a little. I kept trying to ignore the feeling of wanting to bolt out of there. The kids were having fun, while our food got cold on the table. I never even took one bite.

I realized suddenly with the instinct that only the mom of a potty training toddler has, that Josh needed to go to the potty, NOW. Or there would be trouble in the Chick-fil-A tunnel. I took Josh and Lilli by the hands and told Chloe to stay with my friend, we'd be right back. As I tried to steer the kids through the crowded restaurant, another friend I didn't even know was there popped up from a table and offered to take Lilli for me. What perfect timing.

When Josh and I got into the bathroom, my emotions threatened to overtake my mask of calmness. I felt the tears coming up, and had a thought that might have ruined it all: Lord, why did you give me these dear needy children? I'm not very good at this. And then this thought: Stop it. Get back out there.

So another deep breath, and back out we went. The kids played for a little while longer. I thanked my two friends for helping me, and saw the other mom I'd chatted with earlier. I told them all, "This is hard. I almost didn't come in because Lilli had a seizure in the van when we pulled in." The one mom hugged me, and said, "You're amazing. Bless you, you're a good mom. I can't believe you came in." My friend said, "You did it! You got through it, you came inside with your kids after Lilli had a seizure. Good job, you can go home and write down that you did that." (and I did.) My new friend that we'd sat with packed up all of our uneaten food in a bag and said, "You did the right thing. The kids had fun." She carried the food and my other friend carried Josh.  They helped us all out the door back into our van.

As I drove away from that experience with the free Chick-fil-A food we would heat up and eat later, I had one thought: I don't want much in life, just a little help from nice people. Cause life can be tiring and hard, but when you have people help you along the way, it's more bearable. Friends and family can make you smile through the craziness and tough times. And I know why Chick-fil-A just gave away all those meals to customers dressed like cows. They are just being nice. It was simple kindness.

When people are nice and help me, it reminds me that a little tiny bit of being nice and helpful goes a long, long way. The people that helped me today made my day. The nice girl at Chick-fil-A that sweetly placed my order and said "My pleasure" with a smile, despite my confusing order while my daughter with special needs had a meltdown, made my day. Kindness is worth way more than any chicken sandwich.

Thank you, kind friends, and thank you, Chick-fil-A. Just for being nice. I appreciated it.

Dance Recital in a Different Way

The other night I fell asleep reading a book to Lilli. I guess we both fell asleep at the same time. We were all curled up together, with the light on. I woke up to the slightest teeny movement. Lilli was having a seizure. And this is why we do things differently around here...even going to sleep. We do a lot of things differently. I used to cry about it. Now I can laugh about it. Well, only sometimes. That's a lie, I still cry about it too. I guess I'm just getting more used to it as the years go by.

I really don't know if I sleep deeply anymore. It is something that happens to a mom when there is a newborn around. At first, you wake up at every sigh and sniff that comes over the monitor. Over time, most moms begin to turn the volume down. And eventually, the monitor collects dust, and ends up in a yard sale. That's what happened with Chloe, and then Josh.

But not Lilli.

I don't know that we will ever not monitor Lilli. It seems like whenever we start to loosen up a little because she has not has a seizure in awhile, she has a seizure. And we are back to being uptight again. This cycle has been running for, well, nine years now. We have learned to live with this, but we both could use a really good, deep night's sleep. If our bodies even know how to do that anymore. I am not complaining. Just explaining why we may seem uptight or exhausted sometimes. I try not to talk about it. Everyone is tired for their own reasons. Lots of people don't sleep. Right? That's what I tell myself.

Tonight was Chloe's dance recital. Chloe is six, and needs to do what other six year olds do. There is so much that is "different" about our home life. For example, we keep having to explain to Josh that Lilli's ABA therapist does not actually live here. (When she pulls up, he runs to the window and yells, "Morgan's home!") So we want to try and make some things "typical" for the kids as they grow up. Even though the logistics are not always easy, Chloe has taken dance class for the last two years. And the recital is obviously the special event at the end of each year.

At the playground before one of Chloe's dance classes. 

Months ago, I started to plan for this one night. I have to plan like this. I knew we would not take Lilli or Josh to this recital, although it crossed my mind. But no, this night was about Chloe, not about keeping Josh quiet or Lilli happy in a dark auditorium. However...we have babysitting issues.

We cannot have just any regular person babysit Lilli. There are so many reasons why. We feed her, bathe her, she is still potty training, (that is my positive way of saying she needs to be changed, and we don't want just anyone changing our nine year old) she cannot talk, so the person watching her needs to really know her and understand what she needs and wants.

But the biggest reason is of course, her seizures.

When we leave Lilli with someone, we have to explain to them what to do if she has a seizure. That involves giving her emergency medication, which is administrated rectally so that it can go into the bloodstream immediately. Yes. Read that sentence again. Its purpose is to stop the seizure. Sometimes it is not needed, if the seizure is short. Sometimes it is needed for Lilli, because the seizure does not stop. Many times in the past, it has not even helped at all. The whole reason why we moved here and changed our lives has to do with this medicine sometimes not working. One day soon I will tell you that story.

Imagine how awkward that is to pull out a sheet of directions with pictures explaining how to do this. But we have to. We can't take chances. This is the biggest reason why we can't just have any babysitter for Lilli. It has to be someone that can take all of this in and be OK with it. It is a lot to ask of anyone.

Not your average instructions for a babysitter.

(I have to add an aside here, and say that the oddest things can connect special needs moms. I made a new friend once because I noticed she was holding one of these medicine packs. I saw it and instantly knew that this stranger lived the same rarely talked about life circumstance that I did. I walked over to her and introduced myself because of that medicine. She was holding it for her son. We became fast friends.)

We used to qualify for nursing care. That made it easier to leave Lilli and have peace of mind. But we don't qualify anymore. Lilli has a lot of needs, but not enough for a nurse. So we asked a trusted person we know - one of the only non-family members we would leave her with - over two months ago if she would watch Lilli and Josh for this one special event: Chloe's dance recital.

Jasen and I talked a lot about just how long we would be gone. Leaving Lilli for any length of time is often stressful for us. Most people are happy to get a break from their children, for a date or special event. We are happy for a rare break, but then... we worry.

The morning of the recital, I drove by myself almost an hour away to a church volunteer event. It was amazing, for two reasons. One reason was simply because... it was an amazing event. But the other reason was because I got to be just me and not worry about anyone else for about five hours, because the children were with my husband. It was a blessed escape.

When I got home, things were in their normal full swing. Lilli was working with a therapist, Chloe was playing store, Josh was...being his three-year-old-boy self and bugging his sister.  I was just starting to fold some laundry when I heard the therapist shout, "Seizure!!"  I yelled, "Seizure!" to Jasen, who tore around the corner and grabbed the emergency seizure medication we always keep on a table in the same spot. He bolted by me and flew down the staircase.

Lilli had been downstairs reading with the therapist. Jasen ran down the steps, grabbed Lilli, and ran back up the steps carrying her.

Afterwards, as the three of us looked at Lilli and tried to figure out what set that seizure off, I looked at Jasen and said something about getting ready for the recital.

"Well, I don't think that's going to happen for me now." Jasen said, his eyes still on Lilli. "How can we leave her now? The last time she had a seizure like that, she had another really bad one a few hours later."

I remembered. I didn't say anything, and I thought about it. Both of us wanted to go. Who was going to make the sacrifice and miss seeing sweet Chloe dance her big moment on stage?

Then, I had an idea. I explained the crazy plan to my husband. He listened, and slowly agreed that we could probably make that work. I went back to getting Chloe ready for the recital, wondering how it would go.

At 4:00, I left with little Chloe, hair in a bun and pink tights and all. Jasen left twenty minutes later in the van with Josh, Lilli, and the babysitter. They pulled through McDonalds and got Josh a rare treat - a happy meal to keep him busy in his car seat. Ten minutes before the show started, they pulled in and I met Jasen in the parking lot. He was carrying Chloe's surprise rose.

I had saved two seats down front. We slipped in right before the lights went down, and Jasen texted the sitter out in the van in the parking lot to make sure the last five minutes had gone OK. The plan was for her to text or call us if Lilli had a seizure, and Jasen could dash out to her in the parking lot and be by her side in seconds. It was a little unconventional, having our kids be babysat in the van in the parking lot for a few minutes, but it was the only way we both felt safe to attend the recital. We would only stay until Chloe danced.

Chloe was the third group to dance, and Jasen watched her with his phone in his lap just in case, while I videoed Chloe with my phone. As soon as she was finished and the ballerinas did their little tiptoe-run off the stage, Jasen and I slipped out a side door.

We met Chloe in the room where all the other dancers were, and Jasen gave her the rose. I took a picture of her with her daddy, and then Jasen said good bye. He left to go back to the van where our other two children were with the sitter, happily watching a Sesame Street movie.

I would not say a picture is worth a thousand words for this one. You can't tell what is going on behind the scenes.

We'd made it through. No seizures. Total time together in the auditorium was I think twenty minutes.

Chloe and I snuck back in and watched another hour of dancing. She snuggled on my lap, still in her tights and ballet shoes. I don't even think she knew about any of that behind-the-scenes-craziness. And that's a good thing. She doesn't need to know all of that. She only needed to know that both mommy and daddy came to see her dance recital.

I don't like to use the words "always" or "never." We don't know what God can do, and sometimes the seemingly impossible can be made possible. But there are just some things I think it is safe to say "always" about. I am pretty sure that we will always need other people in our lives to help us with Lilli. It will probably change over time, how people help her and how they help us. Maybe one day, we will be able to take Lilli certain places that we have not been able to take her. Until then, we depend on others to help. And I am so thankful for all of the helpers God has put in our lives. I depend on all of them so much. If someone can't come to help me, it usually changes our plans for the day. If someone can't help with Lilli, it often affects whether we do certain activities as a family. I am thankful for the help, and sometimes worry about what will happen when certain people move on and cannot help us anymore. But then I remember, God knows what we need, and He will put someone else in Lilli's life to help her.

And we will just keep doing things... in a different way.

Church. Part 5: Small Group and Special Needs

Continuing the story from Part 4 about Serving...

Hitting a Wall After Joining

Two of the biggest ways to get involved in a church are serving, and small groups. But this is where some special needs families might join your church, and hit a "wall."

The special needs of the child affect every person in the family, and every aspect of everyday living. This is why I write this blog, so others can see a little into our lives and understand that it is very different. So even something like the parents serving at church or joining a small group is directly impacted by their child's special needs. I will do my best to explain why.

In the previous post, I told how we found a way to serve in our church, even when I didn't think I had much to offer. We were guided by another person in the church, who helped us find a specific place where we were able to serve.

Things were going well with serving on the Prayer Team for many months. We had discovered a way to serve others in a way that worked with the life of having a child with special needs. One day, we were picking Lilli up from her special needs class after the service. Marianne, a volunteer in Lilli's room, asked us a simple question: "Do you guys go to a small group?"

This one question led us in a completely new direction of serving. I am so thankful she asked us.

We explained to Marianne that we wished we could, but we had tried and it did not work out. See, we had signed up for small groups - we filled out a card during a service with information expressing our interest in joining a small group. We actually contacted several group leaders near us, but we always hit the same wall: what about Lilli? As in, what do we do about childcare for her while we go to a small group meeting?  We even called the church to offer hosting a small group in our home, thinking that we would take turns watching our own children in another room. (which would not have been ideal at all.) After a few weeks of phone calls and emails, we gave up. We could not take her. We could not get a babysitter for her (I will explain why in a minute). We almost decided to split up and take turns - one of us going to a small group every other week. But we take turns a LOT, and we just didn't want to do that. We wanted to go to small group as a couple.

Overcoming the Obstacles

This is a list of possible issues for parents who have a child with special needs:

1. No childcare or childcare that is not appropriate. The child cannot be left with just any neighborhood teenage babysitter, it has to be a responsible adult who is comfortable and can care for their special needs. Can I leave my other two children with a babysitter? Absolutely. Just not Lilli. An added challenge is that we have no extended family nearby to help us.

2. Money for childcare. This goes for any young family in the church. I don't think I need to explain that one. Well, maybe I do. Many families with a child with special needs are trying to make it on one income so one parent can stay home and care for the child. There are extra expenses that come with special needs on top of the regular expenses of raising a child. If there IS "extra" money, there are always long lists of things - needs, like "necessary wish lists" for children with special needs - it is usually hard for these parents to put themselves first. For example: Hey, honey, my aunt sent us thirty bucks! Should we spend these thirty dollars on a set of adapted utensils from this special needs catalog because our child can't hold regular utensils when she eats and insurance does not pay for something like this? Or... should we hire a babysitter so we can go to Bible study tomorrow night? Even little decisions are tough.

Maybe that's a bad example. I am struggling with trying to sum up why I think families with special needs children would probably not hire a babysitter to go to a Bible study. Maybe some would. I just don't know any.

3. Childcare too far away. Ok so let's say we had a great, trustworthy, adult babysitter that was free, or we had the money to pay for one. We would still need to be close by. Why? Because Lilli has life-threatening seizures, and if that babysitter calls us and calls 911, we need to fly out of there fast and be by her side in seconds. This same scenario goes for children who have any range of medical needs, or even behavior issues that hinder a parent from ever being too far away from the child. For this reason, we needed to have Lilli in the same building as us when attending a small group.

So, taking a look at our list of challenges, Marianne went to people in the church, and helped to get our small group going:

The small group for parents of children with special needs.

Marianne asked us if we'd lead it, and she would coordinate the childcare for right there on site, in a nearby room. We were happy to lead it! Marianne went to the pastor about our group. Our church does not have a building - we are a load in - load out church at a temporary location, so meeting at our own church building was not an option. She found a safe, handicap accessible, free place for us to meet and recruited volunteers to watch our children. We stepped down from the Prayer Team, and moved into our new serving positions of leading this small group. There was immediate interest from other parents who have children with special needs. Who wouldn't want to come to a Bible study to meet with other parents who understand what you are going through? And, bonus, responsible adults are watching your child for free in the next room!

In our small group, we all have something huge in common: we each have one or two children with special needs. Our very first group meeting was unforgettable. What was your first small group meeting like? Maybe lots of getting to know you chit-chat, an icebreaker, a little teeny discomfort in figuring out how it all works, with the sharing and reading and prayer requests.

Not this small group.

There was instant connection and bonding with everyone. We went from surface chit chat to serious heartbreaking stories and emotion in minutes. We told each other our stories, about our children and their medical needs, diagnoses, how hard it was to do simple things in life like grocery shop, eat a meal together, find time alone with our spouse, get more than four hours sleep straight. How heartbroken we were about certain things, how hard it was to work on our marriages when we spent all of our time and energy dealing with special needs. And there was no pity. No awkwardness. No, I don't have any clue what your life is like and I feel so sorry for you. 

We all felt like we were in the same boat. It was like a support group, except... it wasn't. We were supporting each other, but we were supported in God's word together and could support each other in prayer. There are a lot of support groups in the community for various things like Downs Syndrome, Autism, and other special needs. But special needs support groups in the community don't have the part about Jesus, prayer, God's promises, and leaning on Him for strength and hope.

That first meeting, honestly, I think we all cried. Well I'll say that some of the guys got "choked up." (Gotta save face for the men.) It was moving, and I was amazed at how quickly we all connected. It's wonderful when you have someone that "gets" your crazy life without you having to explain it to them.

How the Group Changed

That was a few years ago. Since then, some things have changed. We still have a group, but it is a little different now.

Sometimes things happen, and you don't understand why until much later. All you really need to know is that we lost our meeting place. It was no longer made available to our group. So we stopped meeting, because there was no place for us. (Is this ironic?) I was not OK with the fact that since we had no place to meet, our group might just stop meeting. But our small group, well we can't just meet in someone's home. It has to be handicap accessible - which our home is not, because Lilli is not in a wheelchair. Plus would need a large space, with extra rooms where volunteers would watch our children. None of us have large houses with this kind of space. We would need something very specific to meet our needs. It felt overwhelming, and maybe impossible.

So I asked God for it.

I prayed pasionately, I prayed constantly. For months.

I asked God to do something BIG, to meet our needs and take it further than we could ever imagine. My heart was burdened for families like ours in our community. If we could just find a place to meet, we would ask families from all over the community to come. We would welcome them and they would be able to come and be a part of a small group. If they wanted to come to our church, great! If they went to another church, great! But... chances are, we guessed they could not participate in a small group in their church for the reasons I listed above. So we wanted to have a small group Bible study for any family with a child with special needs - not just in our church, but in the whole community.

Then, after praying, I had to do my part. So I took a few days (well, a few weeks) and made hours of phone calls and kept a notebook. I asked around, I Googled, I made some random phone calls to people at different agencies, including the local NICU and special needs services in our area. It was sometimes awkward and required explanation, but most of the time people were interested to hear about our group. One even told me that when we did find a place, to please call back and let her know so that she could come (and she did!) Everyone I spoke to said the same thing: there is nothing like that in our community. Families need something like this. What a great idea. 

I was encouraged. I kept praying, and I kept calling. During that time, I started to get to the point where I felt like giving up. But that is where faith comes in. Faith is not easy. You don't really need faith when you have instant gratification. Faith is being sure of what we hope for and certain of what we do not see. I could not see what God had prepared for us, but I was sure that this was a need that only God could fill.

And what do you know, one day, through a series of calls and a short visit, God gave us a fabulous, free place to meet. Five rooms offered to us for the parents and for childcare, and a kitchen, in a local church downtown. It was perfect.

The very first meeting a few weeks ago, we had 16 parents come, and 22 children. If I counted right, 13 of those children have special needs, the others were their siblings. We had volunteers from my church come to watch our children. Two of the volunteers took charge and asked the other volunteers to come, so I did not have to coordinate that part. Some of the parents that had been coming to our group for awhile helped and brought food and drinks. We put together a nice dinner for everyone. It's always great to meet with food. (The food helps to lure the guys there.) Jasen and I put together a short Bible study. What was it about?

Hope.

When we all got settled and I looked around at this circle of overwhelmed, soul-weary, selfless parents, I felt emotional. It felt like home to me. I cannot wait until the next meeting.

People are hearing about this group through facebook, word of mouth, and good old fashioned flyers. The interest is growing. I've received emails and messages from people I have never met, asking questions and expressing their desire for something like this. Some go to church, but don't feel like they are connected. Some don't go to church at all, because they have not found one that has a place for their child. Some go to our church, but were not able go to another small group because of their children's needs. Several people wrote that they wished they had something like that in their community, because we are too far away to come to ours.

We know that there are hundreds of families right here in our area that have either no church family, or no way to go to small group. So we believe it will grow.

Something like this can only come together because God does it. But I know why He is doing it. Because we matter to Him. And if families in our area that have children with special needs want to do something as seemingly "simple" as go to church, and go to a Bible study, I'm going to ask Him for His help. He answered. He sent help, in the form of a few volunteers from our church that realized we needed something a little different, and those people did something about it.

Look at Your Church

If pastors and churches are taking a good look at this issue of special needs families in their churches, this is a part of all of it. If you make a place for the children, the families will come to visit. The logical next step is for those families to get involved and connected somehow. But how? After a church creates a place for these families, how will they get involved? Will they be able to serve, or join a small group? If you help them, they will be able to. Many times this is not an "I don't want to" issue, it is an "I'm so overwhelmed and I don't see how it is possible" issue.

I share these experiences, because I know there are families like us who have felt the same way about getting involved in a church. If you want to know if it is an issue in your church, I guess all you would have to do is look at the parents of the children with special needs in your church (if there are any). Are they serving? Are they in a small group? Maybe you could ask them. Of course, they may have other reasons. They might not be interested. They might be like many families who just come on Sunday morning, and that's it for them. Maybe they are very overwhelmed, and they cannot imagine how they could add one more thing in their life. You can show then that small group could be a break for them, if volunteers help. What if they do want to get involved, and they don't know how because of their child's special needs? They might need just need some caring volunteers to see a need and do something about it.

I hope all of these posts about church have helped encourage those who are interested in this issue of special needs ministry. I love hearing from everyone who comments, and I pray that these posts will be passed to churches who have never given thought to any of this. I want to tell those churches: it's ok. I never thought about any of this stuff either, until we had Lilli. So I hope it is helpful to read about our experiences. I pray that it will be passed on, to those on whose hearts God wants these words to land.

Church. Part 4: The Rest of the Story...Serving and Small Group (without complaining)

People that are following Christ will grow and change. Ministries that are led by God will grow and change. So since we first visited the church that had a place for Lilli three and a half years ago, a lot has happened. The first three posts about our church experience were only the beginning. I think it is important for readers interested in this issue to know that simply having a place at your church for children with special needs is important and needed. And it will be a blessing to everyone in your church body - mostly the volunteers I would say. But, it is not the end of the story. It is just the beginning....

This is our "serving and small group" story.


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Continuing from Church Part 3: The Church that Had a Plan

Why we Kept Going Back

Our family had been attending this church for several months. Lilli did great in the special needs class, and Chloe loved going to church because it was fun, and she was learning about Jesus on her level, as a three year old can understand. Then we had baby Josh, our third child. We were continually surprised at how much thought and planning this church had put into the smallest details. We brought newborn Josh to church and discovered that there was an entire area just for nursing moms. I sat in a comfortable rocking chair in a completely private area, and watched the service on my own tv while I took care of Josh. Go ahead, ask me, because I know some of you moms are thinking it... why I didn't just stay home and watch it online in the comfort of my own home? Because I wanted to go to church with my family. Because I need community. I need contact with the outside world. Because I want to go to church and be there with my husband and with other people. I want to participate in some way, and be a part of it, even if I have to do it in a different way. (You can apply this analogy to anyone, especially people with disabilities. How ironic.)

In this private area, a female volunteer always came back to check on me and see if I needed anything, every single single service. There was a changing table with wipes nearby. Next to me on a small table, there were thoughtfully placed granola bars and water bottles. It was nice. I felt loved. (I just feel like I should add that this is a load-in, load-out church. That means someone carried those rocking chairs and all that stuff in just for nursing mothers - every week.) We went to church together as a family, and I still got to be a part of the service. I did not have to sit in a silent, empty room (or worse yet, in a bathroom while toilets flushed) staring at the wall while I waited for the baby to eat. That, I had experienced many times before.

I would argue the whole "staying home because it is too hard to go to church" opinion forever. And as usual, I think that could be another entire post. So I will move on....

One thing about this church was that they seemed to try and think of some small inconveniences that might hinder a person from coming. I felt extremely blessed to have found a church that had both a place for our daughter with special needs, and a place for nursing moms. Everything else was just bonus. See, it really does matter when people can't simply attend a church service because there are no accomodations for them, or for their children. Some churchgoers complain about things like lighting, or worship style and music, and it seems so absolutely frivolous to me. After the last nine years with Lilli, we see that just the simple fact of being there is a blessing. If we are blessed enough to be able to attend a service as a family, we would never dare complain! If hypothetically I weren't too fond of a song, I'd keep it to myself. I'm fortunate enough to even BE there choosing whether to sing it or not. It's not about me. I am there to worship my God, and I am so very happy to be there. (The bonus for me is that I happen to love the worship songs at my church.) In the Christian world, there always seems to be the small crowd of cranky complainers. Complainers about things in their own churches, and complainers about things in my church. But if you are one of those complainers, ask yourself if your church would have a place for my family. Child with special needs, nursing mom, and all. Not just a "place," a thoughtful place. If you don't, now you see why we kept going back to this church, without complaining.

And we decided to join it.

Joining, and Figuring Out How to Serve

In our church, we don't call it "membership," we call it "ownership." Because members have rights, and owners have responsibilities. So as a new "owner," we attended an "ownership class" and met with people to decide where we would like to serve. All of the serving area responsibilities were clearly described on a hand-out that we were given during a presentation, and then we were divided up to meet with someone to pray and decide where we would like to begin serving. This is where my "special needs parent" story comes in.

As I looked carefully over the list and at the time and description of each church job, I began to feel overwhelmed. I could not figure out when or where I could serve, because of Lilli.  I could not serve in one service and attend another - Lilli could not last that long in childcare. We could not split up and come at separate times to serve - We live a half hour from the church, and my husband and I are a team. We need each other when we bring our children to church. Getting from the parking lot to the check in station with our children is often like playing "pin ball" with three balls at once.

When you have a special needs child with overwhelming needs and care, sometimes it just consumes a person. It's your whole life, it kind of seeps into every single area until nothing that's "just you" is left. With a five year old that had seizures, could not talk, was spoonfed pureed food, wore a diaper, had walking and balance issues, and slept in our room with a blinking monitor all night because of her seizures, we were drained. On top of that, we had a three year old, and a needy newborn. Jasen was in a full time doctorate program. I think that was why we felt like I could not figure out how, or where to serve in church. I was depleted in every way just by serving my children all day and night. Three and a half years later, some things have changed. I remember that back then, Jasen and I were both burned out and stretched extremely thin. (Now we are back to just being plain old exhausted and slightly overwhelmed, but we're good with that.)

I was paired up with my "ownership partner." I sat across from a sweet young woman with blonde hair, and she asked me about how I met Jesus. I told her my story, and then we started to talk about the different areas of serving, and what I was interesting in trying.

I thought about what I had to offer. It didn't feel like much nowadays. Years ago, (in another life) I taught Sunday school. I worked in the nursery. I sang, played the guitar, helped with planning the service. I had done a lot of different things in the past that I could not figure out how to do now because of Lilli. I'd become a different person. I felt like I was drained dry and had nothing left to give on Sunday mornings.

That was when I was blindsided with an embarrassing, out of nowhere, flood of emotion. In a room full of people I did not know. I felt the tears coming to my eyes and thought, oh no, What? Come on, don't cry, no, not here, get yourself together! 

"I'm so sorry," I explained, absolutely mortified at myself.  "I want to serve... I just....I can't figure out how I can serve, because we have a daughter with special needs and she can't last in childcare for that long..." I fumbled to explain my odd emotional reaction to the list of serving descriptions. How embarrassing. How could I explain my very different life to a complete stranger in a minute or two? I couldn't.  I told her a little about Lilli. I tried to sum it up by explaining that whatever I did, it would have to be something that would work with Lilli.

Because absolutely everything we do in our lives depends on Lilli's needs and care. Her seizures. Her...everything.

I glanced across the room at my husband, who was smiling and laughing with his ownership partner. Goodness, I was such a mess. I wondered what he was picking off his list over there, cause his issues were the same as mine. Except for the hormonal-nursing-mother-woman part.

I looked over the list again, and she suggested the Prayer/Care Team. As she explained the team to me, I began to envision how I could serve in that way. Yes! I was relieved. I could do that! I went over and pointed it out to Jasen, and he decided he wanted to serve on the prayer team too.

This is why meeting with another person - a woman - one on one, was so important. I could tell her about my life, and she helped me find a place where I could serve. If I had just been expected to sign my name on a list somewhere and show up, well, it would never have happened. I needed that extra guidance to help me see that yes, I am able to serve. Just not in a traditional way. And why is it so important to serve? some of you may wonder. I mean, come on, look at how needy we were, you'd think I would just say that we needed to BE served, not serve others, right?

Wrong. I can't explain serving to you like a pastor would. I can tell you that when I serve others, it gives me joy. It takes my focus off of myself and my little world and my own problems. I might be exhausted before I get there, but I love it while I'm serving. I am a part of it all. It is actually exhilarating to me. I can help someone else, instead of being helped. That is a gift to me. Serving others is not a chore. It is a privilege. All I can say is if you are serving and it feels like a chore, you might want to change how you are serving. I can't think of a much better feeling than serving others, and if you don't feel joy, you're doing it wrong.

Serving through Prayer

At first, Jasen and I became a part of the "Prayer Team," and prayed throughout the week for all the many prayer requests that came in from people during the service (the little cards you can fill out and drop into the offering.) The team met for a few minutes before the service to touch base, but the real serving happened starting Sunday afternoon at home, when the prayer requests were emailed out to us. The prayer team leader would type them all in and send them to the team members. Then we would pray for the requests all week long, and contact the people we were praying for to let them know that they mattered, and that real people were specifically lifting their requests up in prayer.

Praying for others? No problem! This I could do while I was taking care of baby Josh, pureeing Lilli's meals, driving her to therapies, in the middle of the night with an awake child...it was an important job that this multi-tasking mommy could definitely handle.  It was perfect for us. A few times I even got to serve on the Care Team during the service and pray with people in person, and I loved that.  It was great to finally be involved and meet new people in our new church. Many times, there were prayer requests from us. And now we knew the people on the team that were praying for us.

Families who have children with special needs might feel like they cannot serve. Sometimes it is simply enough that they can get their family to church. I think a church should take care not to pressure these families to serve or make them feel bad for not serving. They are in a different category. I don't know how to explain why in a simple way. These parents are not soccer moms or little league dads. They are appointment/therapy/medical-procedure moms and dads.They are living every day just trying to make it through each moment. It's like the exhausting state of mind of having a needy newborn, but as the child grows older, that state of mind never, ever, goes away. And for many parents, the diapers, the bath times, the dressing, the feeding, and everything else never goes away either. It continues on and on, with no reprieve, and the child gets bigger, and heavier. It's just a very different, often difficult life for parents raising special needs children. This you might glean from reading some of my other posts. I could tell a hundred stories about the many challenges of these families. If you spent a few hours at one of their houses... you would understand. That's all.

So let's say these families with special children are coming to church, but they don't seem connected. They come, (sporadically maybe, because their children might be sick or having seizures, or surgery, or again, a long list of reasons that have only to do with special needs)....and they seem interested in being involved, but they aren't connected. Don't give up on them. They need encouragement in a different way. They can serve. There are ways that they can serve, it just might be in a way that does not involve being at the church for two services.  I don't know the answer, because every church is different. All I know is that for us, we wanted to feel connected to the church body, but we had trouble figuring out how. We needed someone to help us see that we are able to serve, just in a different way.

The prayer team was a great first serving job for Jasen and me. But then as things usually go in life, one day, everything changed. God had exciting plans for us through serving at our church.
Please read the next part of the story in my next post: "Small Group and Special Needs."