Abby squirmed on my lap as I tried to hold her still as the doctor and her assistant worked. “Shhh, shhhhhh…almost done,” I whispered. And for the first time…ever…in Abby’s life she heard me.

My daughter heard me whisper to her. She turned. She listened. She calmed.

I was heartbroken when we learned that Abby’s hearing loss was permanent.  The realization that she had never heard me whisper tore through me. All of the nights I had spent walking the halls as she struggled against sickness, whispering in her ear, singing softly, and shhhhshing her never made it past her tiny ear canals.  With every whispered “I love you” as I put her to bed, she saw my mouth move, but never heard the words.

I’ll never forget that simple moment in the doctor’s office as they monkeyed with her new hearing aids. The first time she turned towards me when I whispered in her ear. I won’t forget the first time her eyes lit up as she walked around and heard her own footsteps for the first time. She turns towards the sound of chirping birds and is overwhelmed by the loudness of her three brothers.  She hears me now when I call her from across the room. We’ve turned down the TV to a level that doesn’t fill me full of rage.

It’s beautiful. And soon, I’m sure, the sounds that were missing for her to make sense of spoken language will come and I will have that rush of delight when I finally get to hear her call me ‘mom.’

If my life has shown me anything, it’s that the times that hurt, the times that were so low, make the great times SO MUCH greater. Waiting makes the rewards that much more sweet.  Abby’s taught me to slow down a little bit, and to revel in every single thing- even the sound of my own footsteps.

Happy hearing, Abby.

Minute one.

Sleeping, her coughing subsided as her body began to tremble. Small shakes turned quickly to an uneven but terrifying shiver. Her breath caught as her eyes blinked open. I could see the shock in her eyes. Her body was betraying her.  Her body was cool. No fever. Lance scooped her up and stripped off her clothes as I ran into the bathroom to run a bath.

Two.

Her breathing was labored and erratic. Her body shivered in kind. Seeing that she was having trouble sitting on her own, I pulled off my clothes and got in the tub with her. I held her against me and breathed with her. The water was hot, but her shivering wouldn’t quit.

Three.

The water covered her now as I rocked her in my arms. Her skin was mottled, her hands a patchy purple. Breathe…slow…breathe….slow….shhhhh….slow, I willed her to calm. I willed myself to calm. Lance ran in with more albuterol and ibuprofen to add to her tylenol and steroids.

Breathe. Slow. Shhhhhhhh.

Four.

Fever. Fever. She’s hot. Too fast. This was happening too fast. Breathe. Her coloring worsened, the lines of the mottling of her skin grew purple. I moved her from my chest and laid her against the back of the tub, hoping that stretching her out a little would help her breathing to slow. It didn’t work. “Something is wrong.”  Lance came in with a towel, swaddled her gently and then held her tight as she continued to shiver.

Five.

Soaking wet, I ran without a towel into my closet to find clothes. We had to get her to a hospital.  Do we call rescue? Would they be fast enough? Breathe. Calm down. Breathe.  Her shivering subsided but her breathing had yet to respond to the medication. Clothes. Where the hell were my t-shirts? Why do I have ONLY pajama pants but no t-shirts? Focus. FOCUS. Think.

Six.

I grabbed my hospital bag that I had emptied just last week in a fit of arrogance. Things had been going so well. Six months since our last ambulance ride! Focus. Focus. Why won’t my ADHD quiet just for a minute? Focus. Clothes. Socks. Hospitals are cold. Clothes for Abby. I’m sunburned.  Stop. Focus. What do I need? Where are my t-shirts?

Seven.

“Get Heidi!” I yelled to my boys downstairs.  “I need a diaper bag. I need…shit…” I notice my hands trembling. Pull it together. Breathe. Lance is sitting on the bed with Abby who has fallen back asleep. Her breathing is too labored, but the shivering has almost stopped. Her fingers were still purple.

Eight.

We need to go. We need to go. Where’s my phone? Breathe. Breathe. Shhhh. Lance carried Abby who was at this point not waking up to the car. Heidi handed me my keys and a soda as I ran out to the car.  Too fast. This is going too fast. The last time her body reacted like this she was carried away by a helicopter.

Nine.

I gun it out of the neighborhood, careful of the kids playing as the sun shined too brightly in my window. I glance back at Lance. His face grave as he held Abby in his arms. He was too afraid to put her in her seat where her head would slump against her body, further obstructing her already labored breathing. The car was hot, but Abby was still shaking so we didn’t turn on the air conditioner.

Ten.

Grateful for a car with some horsepower, I screech the tires as I head out onto the main road to the hospital. I’ve done this drive too many times in the amount of time we’ve lived here. I clench my fists and release them again in an effort to make the shaking in my hands subside.

Eleven.

Cars are too slow. I pound my hands on the steering will in an unseen effort to get them to just move.

Twelve.

Breathe, Abby. Breathe. Slow it down. Please, God. Slow it down.  Her eyes were still closed, her head still slack against Lance’s chest. Her body seemed to calm a little. She was no longer shivering.

Thirteen

I notice little things outside. Cars parked on the side of the road, people in the strawberry patches at Shartner Farms. I glance back at Abby. Her color was returning to her fingers, the mottling on her skin had almost disappeared.

Fourteen.

“She’s okay. She’s okay. Her breathing has slowed down. I think she’s responding to the medicine,” Lance says. I pull over and open the back door. Her breathing had slowed. Her chest had stopped pulling into itself. She was okay. She had responded. She was sick, but not hospital sick.

Fifteen.

I shut the door to the car and place my hand against it, feeling the heat under my palm. I steady myself for a minute, convinced I’m about to cry. I don’t usually have time to break down fifteen minutes into trauma. It’s usually days before I realize how scary things got. She was okay in almost the same time it took her to scare us in the first place. She’s okay. The fear that had been directing my movements now had little place within my body. I felt it wash through my veins.

I hate being afraid. I hate it. I hate not knowing if she’ll respond to the medicines we give her at home or if we’re on our way to our next trip to intensive care. I hate the worry that accompanies the knowledge that without intervention, we could have just lost our daughter. In fifteen minutes.

I’m exhausted. The fear that pushes me to act also seems to drain me of any energy when it leaves my system. My bones hurt. I know I won’t sleep much tonight. I will sit by her bed and listen to her breathe. With any of my other kids, we would have still gone to the hospital to make sure everything was okay. But for Abby, we only go to the hospital when we have no other choice. Exposing her crappy immune system to new strains of her next emergency doesn’t make a lot of sense when we can care for her at home. Still though, I think about what a relief it would be to have her hooked up to machines that would watch her sleep so I didn’t  have to. So I could sleep.

I laugh. I wouldn’t be able to sleep in the hospital, either.

Today was Abby’s first day of preschool. Her third birthday is tomorrow, so she transitioned out of Early Intervention to the school district for preschool. It’s a little surreal having all of my children in school now. I didn’t think it would happen this fast. For children with special needs, getting a lot of extra help early as their brains are still developing goes a long way. I didn’t love sending Casey off to school at three, and honestly, I’m not in love with sending Abby off. I didn’t sleep at all last night. I kept thinking, “She’s so tiny!” and “She’s too young for school…I can’t do this. I can’t put her on a bus!” It was all of the same things I thought with Casey.

There was a twinge of heartache as the little bus pulled up my driveway. Again. We’re doing this all over again. I remember putting Casey on the little bus when he was three all too clearly. Every day for a month he’d scream and yell as I buckled him in. He’d cry and pound on the window as the bus drove away. I’d cry as they drove away. It was the only way. We tried driving him to school, but the half-hour rage would happen there instead of on the bus.

Today we drove Abby, but I took the chance to meet the bus driver when they mistakenly came to get Abby.  The bus driver and the aide were as cute as they could be and were genuinely excited to meet Abby. That put me at ease a little.  The boys made this morning a celebration for Abby. I was talking about it and Peyton said, “Abby’s going to school today? This is exciting!” They all hugged her as we left and congratulated her on going to school.

Everything went perfectly at school. I stayed for too long hoping that Abby would get a little clingy, but that’s not her style. I was having a harder time separating than she was. I went to kiss her goodbye and she did her deep sigh of “commmeeee onnn, Mom” and brushed me away.

She seemed to enjoy the bus ride home. The aide said that she growled at her most of the way. That’s my girl.

…….

Just now I heard Casey talking to Abby in the other room. Their conversation went like this:

How was your day at school?

Aaahhheeeyahhhhh (the fact that she vocalizes back to Casey is a big deal. Abby’s pretty quiet most of the time)

So I guess it was good?

RAHHHHHHHH

Not good? Was it because you couldn’t hear your teacher? What’s your teacher’s name Abby? Right. You can’t talk. Probably wasn’t good because you can’t draw good either.

(That last part was a nod to what happened last night: )

Casey heard me laughing, and asked why. I think about how far he’s come since that first bus ride. I think about how far I’ve come from being that girl who stood barefoot in her driveway, sobbing as her son’s bus pulled away.  I think about the relationship Casey has with Abby and how lucky we are to have both autism and Down syndrome in our home. I’m grateful that the twinge of sadness today as the bus pulled in was only a twinge. I’m grateful to be as prepared as one can be for another round of special education.

My worries about her being so tiny were unfounded. This quote applies:

Like everything else that comes at her, Abby rocked it.  I love this last picture so much because it shows her sass, and also because I think she looks SO MUCH like me.

I asked my neighbor if she would take some headshots of me for some outlets I write for and for Listen to Your Mother (I’m speaking! WOOO!). Being that she’s just totally amazing, she offered to take some of Abby, too.  I died when I saw them. Now I’m going to take you with me.

You still with us? Oh my gosh. I love all of them so much!

If you live anywhere near Rhode island and want stunning pictures taken, she is the one for you.Megan from Imagine Photography specializes in Family, Newborn, Children, Maternity, Seniors, Corporate Headshots, School Portraits and Events. She was so fantastic and patient with Abby who, after about a half hour, started acting like any two year old who was ready to just play and not be fussed over. All of the pictures are BREATHTAKING and Megan was so easy and fun to work with.

To see more of her pictures of Abby and the other incredible photos she does, visit Imagine Photography Facebook page HERE.

This isn’t going to be the story-telling post I wanted it to be. I promised a follow up to yesterday’s surgery story, but as Abby’s recovery is still ongoing, I don’t have the time to work this one out the way I would like. And honestly, there’s no real way to do justice to how much it meant to me to have my siblings come out to help with the surgery. Anways,  moving on…

Abby came out of surgery groggy and uncomfortable. I scooped her up in my arms and put her on my chest, where she fell into a more comfortable sleep. As she slipped deeper into sleep, her oxygen saturation level (“sats”) dropped. The swelling from all the work done combined with her already weak lungs was making breathing difficult for her so they wheeled in- of all things- a gigantic tank of helium. They mixed the helium with oxygen to make it lighter- and thus, easier for her to get into her lungs. She was not happy with the mask, but as soon as her body could stop fighting to breathe, she fell back asleep.

I held her for a couple of hours until both my arms ached. I gave Lance the turn to hold her he had been waiting patiently for. She nuzzled into him in a way that only she could. Lance has a feeling about him that is very calming, and Abby is not immune. Knowing she was stable on the heliox and with her father, I slipped out to grab the boys from the bus and to get my oldest sister and youngest brother from the airport.

There wasn’t the traffic I had planned for, so arrived to the airport early. My kids love the Providence Airport because there’s a large area they see as a running/wrestling arena. Knowing they’d be cooped up in a hospital for the next couple of hours, I let them have at it.  My brother was the first to arrive, and because I script better than my autistic son, I quoted Nemo and said, “Go on, jump on him!” They tore off towards him and almost took him down. Melanie came shortly after. When they both arrived, I instantly felt my stress level go down. I knew that I could now turn my focus just to Abby, because the boys would be well taken care of, and also would have a ton of fun.  I knew that eventually, too, I’d be able to get a break. The exhaustion that had already seeped into my bones had an end in sight.  I felt so loved.

It felt like home.

We went to the hospital where Abby had been doing well enough to get off the heliox and was awake and watching a show. We ate a quick dinner and I sent my siblings home with Lance to get the boys to bed.

Abby had slept most of the day after her surgery and wasn’t ready to go to sleep again until about 10. I had been up since before 5 and was completely exhausted. As soon as she was asleep, I tried to sleep as well. I’m telling you, I can totally see why sleep deprivation gets terrorists to talk. And “sleeping” at the hospital is a work in futility.  As soon as Abby started to drift off to sleep, again her sats would drop. Finally they called in the respiratory team who put her on blow by oxygen. Blow by is super great because you don’t have to deal with a mask or nasal canula, but doesn’t work if they turn their head away from the tube. So for the next couple of hours, every time Abby would turn her head, the alarms would go off and I’d have to wake up, move the oxygen to the other side, and then try to get to sleep again. Finally about midnight, I had started to drift off when the loudest high pitched SCREECH went off. It sounded like an industrial sized tea kettle had blown. It was the helium tank. Someone had left it ON with it still plugged in to the oxygen. I guess the pressure had been too much and it blew.  After that madness, I drifted off to sleep for about a half an hour when the nurse came in to have me give Abby her pain medicine.  Abby hates it, and it threw her into a full on rage. It took me another hour to calm her down. I started to drift off again, when the alarms next door went off and several nurses had to rush in to care for an infant. This went on for over an hour. It was 3am when I fell asleep again. The nurse came in at 4 for Abby’s next dose, which woke her up for good. I got in bed with Abby who literally clawed at my face until I finally woke up to play with her. Aside from giving her medicine,  Abby slept pretty well. The alarms and even the helium taking blowing didn’t wake her up- because she couldn’t hear them.

We had been warned several times that because of the need to thicken Abby’s fluids, there was an increased chance that she’d have to stay in the hospital for up to a week. But by noon the next day, she had proved that wouldn’t be the case and they released us at noon. My brother and sister came and got us and took me to my home that they had spent the morning thoroughly cleaning. It sparkled. It was the first of many awesome things they did while they were here.

Abby bounced back like she bounces back from everything; she’s super tough. As long as she had medicine in her, she has mostly done just fine. This allowed for a fun almost-vacation week with my brother and sister.  We went to Newport, ate delicious seafood, shopped at kitschy stores, and, because I’m super classy, I even took them to our Goodwill store (It’s a Savers, but not everyone knows what that is).   We ate too much food, watched a ton of Duck Dynasty (oh my gosh, have you seen that show? It’s so dang funny) and played games. All of the sadness and anxiety I had been carrying around with me was lifted. I didn’t do a single dish while they were here. Melanie is as fast at cleaning up as I am lazy. Jamey spent more hours than I have the attention span to count chasing around Abby and playing with my boys.  Jamey watched Abby so Melanie and I could go to the little antique stores around here and Melanie watched the kids so that Lance, Jamey and I could go to Carter’s basketball game.

I mean…just kidding…it was super tough and all we did was care for Abby and had no fun whatsoever. (Just go with it, their spouses might be reading…)

While we were at the game Abby had a rough spell, and I came home to find that Melanie had sung her to sleep:

This is Melanie duct taping my kids up in blankets so they could play “Houdini”:

And for your viewing PLEASURE, the greatest and best picture ever:

It was so great having them here. The week went by too fast.  Abby is still recovering. She has her times. She also caught a little bit of a respiratory infection, so these last couple of days we’ve spent just snuggling on the couch and eating popsicles. There are worse things, I’m sure…

Check out my baby’s eyelashes.

Love her.