Five Minutes on Saturday

Sometimes, just one simple everyday moment in time can completely rock my world, and give me new perspective.

That happened to me last Saturday, simply because I met someone and spent five minutes with her. Five minutes that I will probably think about for the rest of my life.

The day before, on Friday, I had a moment with Lilli that I rarely get. Lilli still takes a nap every day. She gets tired out. She's almost ten, but something about her neurologically - maybe the seizures - maybe the brain damage - she still must take a fifteen to thirty minute nap every day. And almost every day, she naps in her special needs carseat while we are driving to pick up Chloe from school.

But Friday was different. Jasen had the day off, and he went to pick up Chloe. Josh had fallen asleep on the floor in front of a Batman cartoon. So I decided I would just try and lay down with Lilli to get her to take a short nap. We snuggled together, and she fell asleep.

Years of interrupted sleep since Lilli was born has wrecked my ability to nap. I have a lot of trouble sleeping. But I didn't mind the quiet time to lay next to her, thinking. It was so sweet, this moment with my daughter. I spend a lot of time helping, dressing, feeding, bathing, coordinating her school and therapy schedules and goals. Then there's Josh and Chloe, who need attention too. But I rarely get to have a quiet time with Lilli, where I lay down and take a nap with her in the middle of the afternoon. (Any mom will agree that it's a miracle to have all of your children nap at once.) I thought, wow, I wonder if I will still be taking naps with Lilli many years from now, when Josh and Chloe are older and are both at school all day.

Then I thought, I wonder how many other moms of nine year olds can do this? 

I hugged sweet Lilli, listened to her soft breathing, and I felt blessed.

The next day, Saturday, I met a girl. The girl I will be thinking about for a long time.

I had heard about her for several months, but I had never met her in person.

A friend stopped by to pick something up. She had this girl with her because she helps provide care for her on the weekends. I went out to the van, because I really wanted to meet this girl that I had heard so much about.

I went up to the window of the van, and introduced myself. I won't tell you her name. She is a twenty five year old girl who has autism. She is non verbal. She has no way to communicate. She cannot be left alone. She needs a lot of care.

She was silently sitting in the back seat of the van, looking down at her hands. I said hello to her though the window, and she looked up at me. Her clear blue, beautiful eyes looked directly into mine.

"I've heard a lot about you, lots of good things," I said. "It's so nice to finally meet you."

She was silent. I smiled at her. "How old are you?"

Some long-time readers will remember an old post of mine about talking to a person with disabilitites. (If you missed it you can read it here.) I knew that this girl could not speak. But she deserves to be spoken to. Everyone does. We talk to infants. We talk to cats and dogs. Some of us even talk to plants. I catch myself talking to toys on the floor, although it's not always nice words. If we talk to animals and objects, how can we ever ignore a person with a disability? It's a person. I know it's hard to know what to do when you see people in wheelchairs, people with missing limbs or people with mental challenges. This is what you do: smile, look them in the eyes, and say hello. That's all.

She reached out through the window and touched me.

I waited a few beats, and then asked my friend how old she is.

Twenty five.

This is what hit my heart: She's an older version of my Lilli. Sixteen years from now. Maybe.

Maybe Lilli will speak words one day. You know that is my biggest prayer for her. But maybe she won't, and that's okay.

I felt the urge to hang out with this girl. I wanted to paint her nails and read her a cool book. I looked at her and saw what looks very much like my future daughter.

And I felt overwhelmingly blessed.

The next morning, we went to church, and part of the message was about joy. That as we take communion, part of it is to remember that God wants to give us true joy in our lives. As we took communion together, tears ran down my face as I thought about how my life has not turned out at all the way I expected. We've missed a lot. My high school reunion is coming up. I cannot even consider it. I have missed weddings of dear friends. I have missed holding their new babies. We have missed trips and vacations. We might always struggle to find people to watch Lilli so we can simply go on a date. We might always struggle financially to live on one income so I can stay home with Lilli and provide for her needs.

But I am seeing that God's plans for my life were greater than any idea I ever imagined. And the blessings far outweigh the things we have missed.

When I was twenty-four with a fresh new teaching career, I never dreamed I would one day resign, because I have a child with special needs who I will likely be caring for full-time for the rest of my life. Some might see it as a burden. I cannot explain it well enough in words. And even when I say this, some will not understand or see it.

But it is not a burden.

It is an incredible blessing, and a privilige. A gift from God. A glimpse of Him. A tiny piece of an idea of heaven.

Even if that does not make any sense to you, I had to try and put it into words somehow.

It's true, I do have some very difficult, discouraging moments. It's hard. Very hard.

But it's a blessing. It is a joy. True joy is not always for happy times. Sometimes joy is most precious in the hardest times. When a person can go through a dark time and still know that God is with them, that God has plans for them, that God knows the future and it is all going to work out for our good, that is real joy.

I'm blessed that God had better plans for me than I could ever imagine. And I'm blessed to have met a future version of Lilli, so that I could have a glimpse of my own heart. I realize that I am not dreading the future. I am not afraid. I am not depressed. I am blessed. I have a purpose.

I am Lilli's mom.

Lilli and me at the pumpkin patch this week. 

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.

Watch Out for that Crazy Mom in Target

It's six a.m. My husband is already gone for the day. All three kids are sleeping in my bed. (The only one who started out there was Lilli). Lilli is hooked up to her pulse oximeter; lit up red and green numbers blinking on the nightstand next to her. Even so, I keep sneaking in to check on her. I am already on my second cup of coffee; been up since 5.

I got up to say goodbye to Jasen, and I could go back to bed if I wanted to. But I know I would not be able to sleep. I'm currently in a vicious cycle of caffeine and anxiety. I have been mentally spiraling down in the last few weeks. I think what started it was the fact that the new nurse did not show up for three days. So I called the nursing agency and said, "Hi, I don't want that nurse anymore, I can't depend on her." We temporarily did not have a nurse. No biggie. But as a result of my calling the caseworker about something else, she saw in our file that it was time for a review. Another nurse came to the house to evaluate Lilli and re-assess her. We are one of those families that kind of "falls between the cracks," I guess. The results of the re-assessment? We do not qualify for nursing help anymore. The reason why? Because we have a new caseworker. The last caseworker took time to hear my story; the details that don't get put on paper in official black and white. She was a mom. She was compassionate. I know some people with more needs than our family might read this and get irritated. I know there are families with much greater medical needs that we have. We are blessed. Lilli is not on a ventilator. She does not have a g-tube. My caseworker just had mercy and granted the nursing care for us because I explained Lilli's uncontrolled seizures, and I needed help. She told me we technically did not fall into the right category for nursing care, but she had the power to grant it to us anyway.

Having a nurse this past year changed my life. It was not a perfect situation by any means. But now that we do not have a nurse anymore, I have to re-think how I do things. The biggest change is my constant mental state of having to be alert and aware of Lilli's needs. I miss that mental break. A good nurse in home health is a rare gem. I learned a ton from our experience. But now, it's back to no nurse. It is one year later, and a lot of things have changed. We have the ipad now. We have an ABA therapist. Josh and Chloe are just now getting to the age where they play with each other. Chloe can take care of herself more. There are a lot of good things that have happened in the past year that I can be positive about. Writing about it helps me to focus on the big picture and see the good with the bad.

I can appeal the decision and plead my case to try and get nursing care back, but honestly I don't know if I have it in me right now to file all sorts of paperwork and drive two hours for a hearing. It seems as though our chances are slim. I have not decided what to do yet. Perhaps I never should have been granted that privilege in the first place, but I am a better mom now because of that caseworker's decision to help me out. I have ten days to decide and respond in writing about an appeal. In the meantime, I have to deal with what is happening right now, and what this change means. It means that I have to take Lilli with me wherever I go, which is no small deal. But it will be OK.

I have to carefully calculate our outings. Any small trip outside the home has the potential to become complicated and stressful with Lilli. We cannot take Lilli some places because of triggers that set off her seizures. We cannot go out at mealtimes or for too long because of Lilli's endurance level. Sometimes Lilli cuts the trip short by wailing loudly. But sometimes, it's just as challenging to take my two year old out in public. I am way too stressed out about things that might or might not happen. I have been wearing myself down into an over-emotional, exhausted pessimist. Each outing by itself is no big deal. But after a whole week of having anxious outings, I was kind of an emotionally threadbare mess. I want to try and see the positives in all of this.

I think my anxiety of going places is real, and has roots that stem back to when Lilli was a toddler. Most outings were incredibly stressful with baby Lilli. I was a new mom, she was my first baby, and she had special needs. Nothing was easy. I was incredibly paranoid because of her seizures, choking, medicine doses, irritability, and other factors. I was also chronically sleep deprived for many years. Now I guess I'm not "chronically" sleep deprived. Just regular sleep deprived. My personal definition difference is based on the number of times I am awakened at night and for how long each time.

Now that Lilli is older, the factors have changed. But going out in public is still very stressful for me. To an outsider, it may seem like no big deal. But to an outsider, each outing is a separate thing. I'll try to act like I'm a different person and look at my situation objectively.

…So Lilli cried the entire time we were in the grocery store, so what? Lots of kids do that. Think of all the moms who have toddlers screaming and losing their minds in the checkout line next to the candy display.
… So Lilli cried most of the time that we were in the dollar store, so what? We were only in there for twenty minutes. Big deal.
…So Lilli sobbed at the library and Morgan had to whisk her out, and I could hear her wailing out in the hallway while I tried to hurry Chloe up to check out her movies…no big deal. (Ok, no, that was disruptive and stressful.)
...So I could not take Lilli and Josh to the playground while Chloe was in dance class because there were so many kids I was worried I could not keep track of both of them, not a big deal, right? Lilli would just walk away into the road and never look back. Josh would run to the edge of the soccer field in to the woods and never look back. No playground for us. (I took them for a short walk instead, and Lilli cried.)
…So I had to drive a half hour through pouring rain and traffic to speech therapy, and when we got there I had to keep Lilli from repeatedly touching a stranger's face and keep Josh occupied while we waited for 15 minutes for the therapist, it wasn't the end of the world. She didn't cry for very long.

The thing is, all of those things happened just last week. That was a typical week. Almost every time we all went somewhere, even when I had Morgan's help, Lilli cried and made our trips stressful and short. At the grocery store, we never made it to the dairy section. Halfway through the frozen section, I said "Ok let's go." She was so upset that it was making me upset, so we left without milk and eggs. Then when we got home I stressed about when I would go back and get the milk and eggs.

Having a nurse meant I got my grocery shopping done without interrupting Lilli's ABA therapy at home, and I could focus on two children while two other people were focusing on Lilli. Lilli was not there, crying and anxious the entire time. I have thought about this, and wondered why I get so anxious when I am out with Lilli. I asked myself if I was embarrassed of her. Really and truly, I am not embarrassed by my daughter. I am not ashamed of who she is. I am proud of her and I adore her. But when Lilli is anxious and upset, I get anxious and upset. An ordinary errand turns into a "hurry up and get this done and let's get out of here." This is really typical when you have a two year old. I went through it with Chloe, and now we are done with it. I'm going through it with Josh right now, and I know it will pass soon. But it has always been like this with Lilli. As she gets older and taller and stronger, it makes me even more anxious.

She has gotten better at outings. As long as I have another adult with me and a bag of cheesepuffs, we can make it for a little while. We try to prepare her mentally for the errand. We avoid certain loud, overwhelming stores. I make a list before we go, and we make a "game plan." We get in and try to get out as fast as possible. Once on a trip to Target, Morgan told me I should be on Youtube. I had all three kids in one of those kid carts with two booster seats. I literally ran while pushing the cart up and down each aisle, whisking things off the shelves. I barely slowed down to grab stuff. It was drive-by shopping. I almost ran a woman over and had to apologize profusely. When I write stuff like this down, I realize I must have lost more marbles than I thought over the years. I prefer to call it "Preventative Parenting." Like I am getting my shopping done quickly before someone has a total meltdown. It makes it sound so much better than "Paranoid, Sleep-Deprived Anxious Shopper Mom Hyped-up on Caffeine and Dangerously Running with a Cart Filled with Three Kids."

So I lost nursing care, no big deal. I still have Morgan, Lilli's ABA therapist. And she's better than ten nurses. Any parent in my situation would do back flips to have any help at all, so how can I complain?

The positives about not having a nurse:
I won't spend as much money.
My kids won't get to see things they want at Target and whine about wanting them (because they will only be seeing a blur as we zip past).
I might be able to call running with a cart filled with three kids and groceries "exercise."
There's no time for me to look at frivolous house décor and waste mental space thinking about the pointless possibility of "window treatments" and useless bowls filled with silly decorative balls.
We will never go to Toys R Us because Lilli hates it – too overstimulating (not going there is a definite positive in so many ways.)
I will be forced to plan meals ahead of time and write specific grocery lists (a money and time-saver in the long run.)
I can't think of a positive about not going to the public library. But my library is so awesome, they actually have a drive-through window. I can reserve books online, drive over there, and a nice lady slides open a window and hands them to me with a smile. (She might be smiling because we are not actually coming inside the building to disrupt the peace, but whatever.)
And the biggest potential positive? I will gain wisdom. I will depend on God and not myself. Because I simply cannot do it all. I will be constantly reminded that everything I have in life is from the sheer grace of God. I will be more thankful for every blessing, for any small help and any moment of peace I am granted. It is true, having less makes you more thankful for what you have. That is true with material things, but it is also true of time, and help from others. When things change in life, a person can either be bitter about it, or gain wisdom. I am no Pollyanna, believe me. But I will not choose to be bitter. I will be thankful for what I have. As for my anxiety level, I know I need breaks. This is a break right now. I am thankful I can write. I can start my day feeling good from getting all of that out. Thanks for letting me share.