Church!

This past Sunday we went to church which was a pretty deal because we haven’t been in over a year and a half.

Let that sink in. Eighteen months, no church with community. That’s 547 days and a lot of Sunday’s longing for a place our entire family could go.

When Reagan had her crisis, we felt homebound due to our new circumstances; no one was comfortable watching her for two hours alone, heck, WE weren’t even comfortable. That’s why Rob was basically home for three months and would sporadically hop into work, and when he did go back, I’d be calling in a teary, cursey storm about how I couldn’t do it and needed him immediately!

We were both depressed, but just because we felt the inability to attend church didn’t mean we weren’t having church within our home. You can read the God category of the blog to see how we totally relied on God for those 547 days (and still do) before we were able to go worship him with other believers. One of the most precious times for me, was when we would feed Reagan at 11 p.m. at night and Rob would read the Bible out loud. He read all of Psalms, Proverbs, the gospels and I think he made it through to Philippians or Colossians before we could eliminate the night feeding.

I told lots of my friends that I felt there was no place for our family at church…the church we attended didn’t have a special needs program. It’s not just that church, it’s so many churches who don’t have a special needs children’s ministry and the parents subsequently feel separated from the church because of it.

Having a special needs ministry at church requires work and thinking, just like any ministry within the church (missions, jail outreach, volunteer events, etc), it requires thinking and planning. I don’t know why more churches don’t offer or advertise their willingness to help special needs families. I understand it’s tough and not glamourous, but it is so important to be intentional about including special people into God’s family.

Rob and I attended a new church over the weekend that had a special needs program. It wasn’t filled with tons of kids, but they were ready. Reagan was the only one that day. She was assigned a “side kick” to be with her so she could be included with the regular kids church. The side kick is essentially there to be there for her one on one. She helps Reagan be included and protects her from any potential situations that may come up if she needs to.

I feel that while Reagan has a lot of special needs, for an hour during church, no one will need to use the g-tube, administer mediation, etc so she’s actually pretty simple. She’s got some mobility deficits and isn’t able to talk much, but she can show you what she wants and can communicate without words somewhat well (sign language is on the agenda for sure), plus she plays really well with others. However, leaving her alone with a group of kids isn’t an option either…she requires an extra set of eyes, ears and hands to help her.

What about other families who may have kids with more or less severe special needs issues; I wonder if they feel the same as we did? Left out.

I believe autism affects 1 in 64 kids, so if you’re not sure if the need exists in your congregation, let me assure you it does. The church we attended last Sunday said they are happy to have any child with special needs in their kids church as long as they feel they can safely accommodate the needs. That’s a great philosophy to adapt, and to take it a step further, if they can’t safely accommodate, how about a church team that comes to the family’s home to pray, sing or just be there for the parents. It’s exhausting when you feel there’s no outlet, no help outside the walls of your home, no real way to have a sigh of relief or rest with others who are willing to help shoulder the load, even just for a moment.

I think it’s really important these families have a cheerleading squad. For married couples who have a special needs child, eighty percent of them end in divorce. We have to stop that statistic. We have to do more. Believe me when I tell you, I wasn’t aware of the great need or that staggering statistic, but now that I am, I challenge you. If your church doesn’t have a program, start one. If you aren’t sure how, Rob and I are more than willing to sit down and talk about how that program could work.

Because after we entered the loud music filled sanctuary and assured Reagan loud music was great and not something she should be afraid of, we sat as a family of three in the sanctuary, and watched Reagan play on the stadium seats in a gym auditorium. We sort of sang and looked up at the screen with the song words and at the band and then back down to our bouncing toddler. When it got quiet, I took her fighting self into the hallway and took a little tour led by the children’s director. For thirty minutes I asked my questions, she answered and I pondered should I let her stay for a little bit? She clearly wanted to go play. She stood on the opposite sides of the kid’s gates and begged me with her finger pointing and grasping over my shoulders to go back in that direction as I carried her away.

So, I decided. Ok, Reagan you can go. I will let go of my tight grip and give you some wings. Her sidekick was ready. I walked back into the sanctuary, alone. Rob turned around with big huge eyes, I could tell they were tear filled. He had the most enormous smile on his face and a look that said where’s Reagan? Even though he already knew.

It was a big moment.

So I showed him this picture and said, “This is what your daughter is doing right now.” And we just sat there and sighed and held back tears.

Sunday school June 2015

“Do you want to go see?” I asked. And he absolutely did.

So we watched her play from the doorway and we watched her grow up a bit that day. She was so ready to be included. And when it was time to leave, she was kicking and screaming because she wanted to stay. We are so excited to go back and are trusting God to keep her safe and healthy. We dedicated to her to God when she was 10 months old, and He is going to honor our decision to do so, not just then, but continually every day.

A Whole New Set of Problems

You know how the Bible says not to worry about tomorrow b/c today has its own problems?

Rob and I woke up early today. Thursdays are early days anyway b/c Reagan has therapy first thing in the morning, and today was also early b/c I had to show property first thing. We headed out the door, kissed each other and started our day on opposite ends of town.

A couple hours later, I received a text from Rob to call him immediately. I was in the middle of showing a home and walked downstairs to give him a call. He proceeded to tell me how he was almost in a terrible car accident. A dump truck traveling in the opposite direction came flying across the median into the oncoming lane. He told me he saw a big plume of what looked to be black smoke/dirt come up from the median. He told me Reagan was sleeping in the back, which I found odd since she normally doesn’t sleep at that time. I am sure that she was sleeping so Rob was totally focused on what was ahead of him.

Ten seconds.

If Rob had been ten seconds earlier, he said he would have been hit. Both he and Reagan could have been killed.

Ten seconds.

If he had carried Reagan to the car from the elevator after therapy, instead of taking the extra time to allow her to hold his hands and walk. If she hadn’t fought him getting into the car seat…if he was speeding or rushing home. I believe those seconds saved both of their lives.

I didn’t wake up today and worry about something like that happening. A car accident like that would have brought a whole new set of problems that I hadn’t even thought about. So then why do I worry about what it will be like when Reagan goes to school. I worry about things I can think up and conjure in my head, but what about the scenarios I don’t think of.

And that’s why God tells us not to worry and to trust him. Today had enough wrapped into it, I don’t need to…no, I can’t think about tomorrow and worry.

When I got home from showing property I came running in and threw my arms around Rob and started crying. “What’s wrong!” he said. “You guys almost died, remember!” Rob and Reagan could have been walking streets of gold today and my world here on earth would have been shattered. We are not promised tomorrow.

Rob drove back to the accident and took these photos. I am so thankful that God kept my little family safe today.

IMG_3006 IMG_3007 IMG_3008

Our First Encounter with the Handicapped Section

Today I am super excited to have my FIRST ever guest blogger!! In light of the story you are about to read, the writer has requested to remain anonymous. But what they have to say is so important that I pray you read it, and consider how the world reacts to the writer and the writer’s child, who just so happens to have a disability. I would ask you to ponder what your reaction might be if you were one of the many players in this story. I pray that you keep this story as a constant reminder as to why it’s important to keep a healthy perspective on life, meaning that, there are others with whom we will interact with in this life who so desperately need a bit of grace and mercy. They need understanding, not judgement. They need kindness, and in order to offer that, we all need a bit of education on the topic of disability. And hopefully, the next time a situation seems unfair to you, you’ll remember this story, take off any blinders clouding your vision and understand not everyone has the same exact life and circumstance as you. Realize things are not always as they seem; whether you can see the struggle or not, we are all going through something difficult in our lives. The writer has chosen to be vulnerable about the experience and I ask that you remain respectful in your comments and encouraging in your words. 
Thank you, Anne-Marie.

Today was supposed to be great.

The sweet little girl whose Daddy I married when she was just 7 was graduating high school today. My hubby was beaming. Grandparents were flying in from all directions. She did it! With a 4.0! She is going onto college with an athletic scholarship! Days of festivities were planned and the graduation ceremony at a local college stadium was kicking it all off. We had our tickets. We had pretty new outfits, proud smiles plastered across our faces and just 7 days to go.

Around that same time, a letter came home from the High School. It was signed by the Principal. It was co-signed by Dean of the college hosting the ceremony. Amidst the medium-sized print that explained the details of the big day, one bold and extra-large sentence jumped off the page at me.

NO STROLLERS ARE ALLOWED ON CAMPUS.

Gulp.

But…but…How will I get my little man around?

Anxiety was setting in.

Don’t panic. This is simple. Just call. There’s a simple way around this rule and you will find it.

With a knot in my stomach, I dialed the phone number at the bottom of the letter. I flipped the page over and prepared some bullet points for the conversation/confrontation. Upon connecting with a live person, I steadied my voice and launched into it. “It” meaning the “for-the-love-of-God-help-me-what-am-I-supposed-to-do-ness” special needs mom pre-panic.

Hi there, I’m hoping you’ll be able to help me. We’ll be attending the HS grad ceremony next week at your facility and I saw the letter that states your policy on strollers. I have a son with complex special needs —

{{The cliff notes on little man. Hypoxic-ischemic-encephalopathy. It’s kiiiiiiinda like a stroke for babies. Infants who survive this “event” often go on to be diagnosed with cerebral palsy as a result of the brain damage that occurs. Hypoxic (no oxygen) ischemic (no blood) encephalopathy (brain disease) – the brain is starved of blood and oxygen resulting in damage. I ramble when I’m nervous so this poor woman whose job it is to answer the phones at a college arena basically took a 10 minute crash course in pediatric neurology before I got to the point. Much like here.}}

I don’t know how we’ll attend without his stroller. He won’t qualify for a wheelchair until age 3, he relies on a feeding tube for nutrition… I can’t park in the parking garage, walk two blocks to the stadium, wait in the line to enter, find seating (potentially up several flights of steep stairs) all while holding him and his feeding supplies, while in a crowd. He can’t support his own weight yet (very much like a newborn) and holding him (at 30+ lbs) is very quickly exhausting – please, I can’t miss this event. How can we attend?”


please don’t say get a babysitter….please don’t say get a babysitter….please don’t say get a babysitter

“Ma’am, please hold and let me transfer you to the right department.”

Three transfers later, I figured out how to tell my story much faster and we got where we needed to be. The angelic voice of Teresa came over the line to reassure me just as sweetly as if she was my very own momma – “Oh, noooo. Please, Miss. Do not worry for one more moment. You do what you need to do. Use your stroller. Tell anyone during admission that you need to be seated in the handicapped section. They will take you there and you will have no problems.”

No problems. NO PROBLEMS! What a concept. So I did not worry. I could attend sweet girl’s graduation with my little man. A wave of relief and gratitude washed over me. We would be there with bells on! Asking to sit in the handicapped section never even dawned on me prior to calling. (Maybe that says more about where I’m at in that whole denial/ acceptance part of the journey? Sigh.)

But problems we had. We arrived very early in the hopes of beating crowds but of course, everyone had the same idea. It was cuh-ray-zee. I felt a lot of eyes on me as I wheeled the stroller through the crowds outside the stadium. Was it my imagination, or was every parent of every writhing toddler looking at me like what the hell does she think she’s doing with that stroller?

Of course not. No one is looking at you. No one is thinking about you. Get over yourself.

After navigating the loitering crowds was the first stop – purse check. I offered up my purse/feeding supply bag to the guard with the bomb-detecting chopstick and he poked around it. He informed me that strollers were not allowed. I was ready for this. Big smile, cheerful demeanor – CHECK.

“Oh, thank you, I know. I’ve called ahead – my son has a disability and we’ll need to sit in the handica—“

“Go on ahead. Elevators are back and to the left.”

“Thanks!” Wow! That was so easy! Look at me go. Pat on the back for me. I did my due diligence. I called ahead. I am one together, grown-ass lady who advocates for my little man. We take no shit and make stuff happen. No strollers allowed, hmph. I am special needs mom. Hear me roar.

We shuffled forward and got in the line for the elevators. Several people in wheelchairs, lots of elderly, a few using canes, and a few seemingly able-bodied folks and even a few strollers were there. A mom and her brand new baby were in the stroller just one spot ahead of us in line. Naturally, I eavesdropped on the conversations around me. Their baby was only 5 days old. Surely they could bring their stroller in. They approached the next guard, ‘elevator guard,’ who let them know that no, surely they could not. It became clear that this section juuuuuust before the elevators was the stroller graveyard and he was the grim reaper – just collecting them. No stroller would pass. I begin to suspect that both Teresa and the semi-friendly guard up front betrayed me with his casual attitude towards strollers. New mom pleads her case. New baby was sleeping. New Mom and new Dad would take turns and roam the upstairs hallways, staying out of the seated area, they just didn’t want to wake the baby by parking the stroller. Elevator guard was steel faced and told them to park it. New mom huffed and puffed. Grandma and Grandpa shook their heads while new mom unbuckled sweet, soft, brand new baby and new Dad grabbed the diaper bag and parked it. Everyone looked pissed.

So now it’s my turn and I get to follow this scene. Joy of joys. Elevator guard looks me square in the face and says “NO STROLLERS.”

I meekly approach and attempt to keep my voice down low enough so that I’m not be screaming about disabilities but loud enough to sound like a lady who knows her rights and will be heard above the crowd. “Hi there, you see, I know everyone here has a reason for NEEDING their stroller, but my little man has special needs and we need to be seated in the handicapped section please.”

Elevator guard stands aside and allows us to enter the NEXT line for the elevator. He delivers one new morsel of information – only one family member can accompany little man. Of course darling Hubby offers, but…this is more his night than mine. His family is here for his daughter. He should go with them.

“Go babe, we’ll be fine.” Sure we will. I’ve got this. Grown-ass lady, no shit taker and all that.

“Text me if you need anything” he says and we kiss goodbye. We plan to meet in this same spot in about 3 hours. New Mom notices me as I push my stroller through and stand near her in line. Does she wonder why I was allowed to have my stroller? Is she pissed at me? And more importantly, why do I care?!

Now a 2nd elevator guard glances at us, gives me a big ol’ stop sign with her hand and says sternly – NO STROLLERS ARE ALLOWED HERE. Then, as if I am not standing directly in front of her, she yells to the 1st elevator guard – “WHY’D THIS STROLLER GET THROUGH?” to which the guard replies “KID’S HANDICAPPED” from a distance of about 20 feet away. At this point, people are looking back and forth (naturally eavesdropping, I guess) and I’m beginning to want to sink into the ground. Or cry. Or yell. Or flip everyone the bird while crying and yelling. We awkwardly wait for the elevator that takes a minute or two or forty to arrive and we make the ride up.

Surely this is it. They said the handicapped section is right there when you get off the elevator. You’re close now. Suck it up.

I exit the elevator and attempt to haul ass to our section. I don’t even make it 10 feet.

“Ma’am! Ma’am!” A young man hurries over to me with a look on his face that had me questioning if I’d inadvertently worn my dynamite-covered vest to the event.

“Ma’am. No strollers are allowed up here.”

I guess four was my limit. I just couldn’t do it politely a fourth time.

OK, I guess I’m going to have to say this to every employee I pass tonight. I called ahead. I was told I would have no problems. My son has cerebral palsy and we need to sit in the handicapped section. For the love of God, would you please escort me there, so that I can just get there in peace?”

“Yes! Yes, of course. I apologize for your troubles ma’am. Yes, let me walk you to your section. It’s right over here.”

I wiped away a couple frustrated tears and we began to walk. We had barely turned in the right direction when a stout and surly looking woman with a walky-talky began to call his name, which I mostly forgot, but somehow still think was Corey. She waved the walky-talky back and forth over her head and came barreling toward us. “Corey. She cannot have that up here. Ma’am. You cannot have that stro-.”

And that’s when Mama lost it. “You must be joking. All I want to do is make it to the handicapped section. My son has cerebral palsy. We NEED HIS STROLLER. I CAN NOT CARRY HIM THIS DISTANCE.”

But in her eagerness to have me comply, she raised her voice back and I don’t believe she heard the words I actually said.

“Ma’am. You don’t understand. It is a fire hazard. There is nowhere for it to go. The aisles are narrow and the stairs are steep. YOU CAN NOT HAVE IT HERE. IT IS A FIRE HAZARD.”

At this point the tears began streaming. I am still coming to terms with my son’s disabilities. Your healthy baby having a hypoxic-ischemic-encephalopathy and nearly dying during delivery are not events you plan for. Watching him fight for his life and spend months in the intensive care unit will change you. When he needs a feeding tube and other various surgeries to survive and then eventually come home, you do your best to raise him and love him. You pray for him and then you curse God. You pray-apologize. You see the best in him. You think maybe, just maybe…everything will be ok. Then you go to the local library story time and see all the same age babies and it takes your breath away. Is he really disabled? I know what the doctors say. I know what the therapists say. I know what I see. But he is so young. Is it permanent? We can do anything we set our minds to. I don’t want to sit in the handicapped section. I don’t want any of this. I don’t want to be here.

But here I am.

A fire hazard? Are you kidding me? What kind of place is this? WHERE DO YOU PUT THE DISABLED PEOPLE?! WHAT KIND OF PLACE IS THIS!!!”

Her face began to whiten and her co-worker placed his hand on her arm. He leaned in and whispered something to her as I continued to shriek.

“HE HAS A TUBE IN HIS STOMACH. I CAN’T MANAGE HIS NEXT FEEDING WITHOUT HIS STROLLER. I CALLED AHEAD. THEY SAID I WOULD HAVE NO PROBLEMS.”

And then she hugged me. She just grabbed me and hugged me tight to her while I caught my breath. She grabbed my shoulders and said “I am so sorry. I did not hear you. I was not listening. I looked at your baby. I didn’t think anything was wrong. He’s just so handsome.”

(The handsome comment didn’t bother me till later. Brain injuries don’t really affect your looks and certainly there are “good looking” people with disabilities, or people whose disabilities won’t always be obvious but who deserve understanding and the right to just get where they need to go without lengthy explanations. But in the moment I was happy to hear a compliment, because yes, he is handsome and I am still a gushing, proud, kinda-new momma too. However, as I sit and write this now, the lack of awareness still aches deep inside my belly and it makes me want to put my baby in a bubble where the “compliments” are light years away from the likes of “well he doesn’t look brain damaged.”)

“Thank you. He sure is handsome. He’s also the sweetest baby in the whole wide world. Now please, we are just trying to watch his sister graduate. I need to feed him very soon and we’ll need to be seated and settled.”

She linked arms with me and the young guard flanked my other side. We walked, three people side-by-side, little man in front, making our way to the section we needed to be in.

I wish I could say the drama ended there, but it didn’t. I thought upon arriving to “our section” that we would be safe – we’d be with our people and far, far away from the looks and questions. But I wheeled my stroller in and wouldn’t you know it, even babies with cerebral palsy get cranky. I tried to comfort him but he was beyond comforting. There were stares. Is it wrong to put words in their mouths? I just kept thinking that every glance meant “Why is this baby in our section? Oh, fancy pants moms these days, can’t just hold their babies, can’t do without their strollers, won’t hire a babysitter. Have to come up into OUR SECTION with those giant strollers and crying babies.” So I nervously smiled. I bounced him on my lap, I held him, I fed him… TUBE FED him, mind you. That was the ticket and he fell asleep. (Also, a few peeping Toms understood why we were in the section after all and smiled at us.) I put the supplies away and the ceremony was about to start. I sat back in my seat and listened to the valedictorian.

I might actually get to enjoy this.

I searched for sweet girl’s face amongst the sea of caps and gowns. I was startled out of my focused search by a tap on the shoulder.

“Excuse me. Strollers aren’t allowed up here. Would you mind at least scooting down to the end of the section, we have a wheelchair coming in.”

So… we scooted down. He slept. I saw nothing through my tears, heard nothing through my silent rage.

It wasn’t supposed to be about us. His abilities or disabilities. It wasn’t our day.

I just wanted to watch her graduate.