Abby · advocacy · Down syndrome

My Message Was Lost With My Words

Whether you believe it or not, I choose my words carefully on this blog. I wrote two posts about abortion and Down syndrome. The first post I wrote on in two years ago was my first post to ever go ‘viral’. It was read and shared by people who believed exactly as I do. I patted myself on the back and thought that I was really getting the message about choosing life with Down syndrome out there.  That my words were making a difference.

A funny thing began to happen. I watched as people would land on this blog using search terms like “Should I abort Downs syndrome baby?” and “Prenatal Down syndrome abortion.” A couple of times, I watched where they went on my blog. They came, they read for a minute or two, they left and never came back.  They read the words and were turned away from the real message. I know from speaking to one person who came to me worried about keeping her pregnancy with a baby with Down syndrome that my words in those posts were harsh and shut down the conversation. They didn’t allow space for someone who really wanted to see what life is like for our family and to poke around to know the reality.

My message was lost in my words.

I find myself getting offended at the very thought that someone wouldn’t want a child like Abby, and that leads me to say things in ways that shut down conversations. It makes me an asshole, not an advocate. At the end of the day, my views on it really won’t make as much difference, I think, as just being open and honest about our lives. People are going to make whatever choice they are going to make, and with anything, it’s not my place to condemn them. What I want is for people to see how good life really is for Abby, even if it’s not always easy.  I want people to STAY on my blog to see that if someone like me can handle the things on my plate (albeit poorly at times…lots of times) that they can, too.

I want people to know the facts, both good and otherwise, about life with Down syndrome. Research shows that doctors aren’t trained in delivering such a message to expectant mothers, and a great deal of the time, they give information that is outdated or downright wrong. If you want to learn the facts about Down syndrome, I HIGHLY suggest you go to this site and order or download a copy of Understanding A Down Syndrome Diagnosis. It’s free.

If you’re here because you’ve been given the news that the baby you carry has an extra chromosome and need someone to talk to, feel free to contact me. I beg you to read on. To see the good, to know what to expect of the hard, and to know that you’re not alone.

Abby · Down syndrome

Happy Hearing Day, Abby.

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.

Down syndrome, hearing loss, hearing aids, child, down syndrome girl

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.

Abby in her hearing aids

 

Abby · Down syndrome

Fifteen minutes of fear.

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.

Abby · Down syndrome

Abby’s first day of school.

Abby's First Day of Special Education Preschool

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 Hey Crazy Ladytwinge 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.

Mostly True Stuff

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: )

toddlers are jerks

 

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 specshe is fierceial 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.

rocking preschool

Abby · funny

You’re Welcome.

I’ve had this gift for you. The most amazing gift. I’ve spent days trying to figure out how to best wrap that gift in the form of words in a post. The truth is, no wrapping would ever do this gift justice. So, presented with out comment:

Abby's selfie...something went horribly right.
Abby taking selfies… something went horribly right.

Feel free to leave your comments though…

You’re welcome.

Abby · Down syndrome

And then I killed you with cuteness!

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.

Imagine Photography, West Kingston, RI

Imagine Photography, West Kingston, RI

Imagine Photography, West Kingston, RI

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.

Abby · Down syndrome

Recovery and Other Good Times

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…

Me and Abby playing while we waited
pre-surgery

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.

also, they're crazy.
also, they’re crazy.

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.

Down syndrome, surgery
The morning after her surgery

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 bouncedIn Newport, Rhode Island 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…)

Surgery, Down syndrome, baby

 

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

Sisters, Down syndrome, help

 

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

duct tape houdini

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

So sexy it hurts

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…

Abby · Down syndrome · Uncategorized

Abby’s surgery story and results.

Early. Too early, I wasn’t ready. I scooped Abby out of bed and put her right into her carseat in the car that I had already warmed up. She fell right back asleep as we made our trek to the hospital. I was alone. I wasn’t planning on being alone, but because of a scheduling error, her surgery was one day sooner than we had expected, and my sister would not be here until after it was over. As an added bonus, my brother decided to come in to help as well. But both would not be there until later, and because mornings with Casey are unpredictable, Lance had to stay back to get the boys off to school.waiting for surgery

At the hospital, I changed Abby into some adorable scrubs we were ushered into the waiting area where a wall of toys awaited my smiling toddler.  We crashed cars and sang songs as the different doctors from the different specialties came in and out, asked all of the same questions, got all of the same answers.  Her ENT came in and crawled right down on the floor with Abby in his continued effort to win her over. I call him “Dr. Doogie” because he looks super young.  But what he may lack in years, he makes up with in knowledge and personality.  He played with Abby for a minute as he explained all of the procedures again.  As he spoke, the nurse fitted me in all of the hospital garb so I could take her back to the operating room and stay with her until she was asleep.

We walked down together, Abby in my arms. I sat with her in the warm operating room while several nurses, the anesthesiologist, the audiologist and the ENT danced about getting things ready. Before I was ready, a nurse came back from behind me and gently placed the mask on Abby. Her tiny body clenched up a bit for a second, and then she nuzzled down into me. I sang her favorite song, “Twinkle Twinkle Little Star” as she drifted off to sleep.  Before I was ready, they scooped her from my arms and laid her out on the table.  They allowed me one last kiss and then, before I was ready, the nurse, holding her arm around me, ushered me out of the room.

No one is ever ready to leave their child to a team of doctors for any procedure, I don’t think.

Gone are the days of holding back the emotion when it comes to my little girl. Gone are the days that I would worry what people think if I lost it in front of them. My baby. My tiny, still baby. The tears fell openly and the nurse squeezed me tighter as she led me to the waiting room.

Lance arrived about an hour later with some breakfast I could not swallow because the anxiety had produced a large lump in my throat. Shortly after, the audiologist came and got us. The tubes were in, the fluid was drained, the sedated ABR was preformed. I knew the news before she told us from the look on her face: her hearing loss had not improved. It’s permanent.  We discussed hearing aids and she gave us her personal phone number if we had any questions.

Another hour later and Dr. Doogie came and got us. Abby had done well in her surgery, but things weren’t as he had hoped. She has tracheomalacia and bronchiomalacia. Basically, her airways are floppy and malformed. Those aren’t severe and should improve with time, but also explain why when she gets a respiratory infection it is much worse for her than other kids.  She also has some issue with the area (carina)  that separates the two main pipes into her lungs (bronchi). It’s flat and underdeveloped. Not sure what that means, but like the other dinosaur-termed issues she has, he said it should get better with time. Lastly, she has a laryngeal cleft. This will need to be operated on in the near future (no idea when) and should help her to not aspirate fluids anymore.

Shortly after we spoke to the young doctor, we were taken back to see Abby. The nurse let me pick her up as soon as I had scrubbed my hands, and there she stayed for the next several hours.

After surgery snuggle

Tomorrow, her recovery story.

Abby · autism · confessions · Down syndrome

Sometimes, words just don’t work.

Abby is two. She’s every bit the two year old that my other two year olds were with an added dose of diva. She’s been SPOILED. She’s adored everywhere she goes and gets what she wants from her brothers. And we are paying. She’s been throwing fits like you would not believe (or would). Thus completely shattering the stereotype of all children with Down syndrome being loving and cute ALL OF THE TIME. She is most of the time. But not all. And she can throw a tantrum with the best of them.

And, as I found again today, so can I.

Other than the behavioral issues we are addressing, a huge cause of Abby’s fits is her inability to communicate her wants and needs. One of her many tantrums today lasted for over an hour.  I held her and rocked her as I tried to calm her down. It brought back the YEARS I spent doing that with Casey. Trying to figure out what was going on with him. The difference between the two is huge, though. Though both could not communicate at this age outside of a few signs, Casey could not be soothed. He’d spend hours upon hours screaming, and there was nothing I could do to help him through the storm.

While I rocked her, I scrolled through my Instagram feed and saw normal people living normal lives. Pictures of family outings, potty training, eating normal foods with normal liquids, all with captions of the words their children, lots younger than Abby, are using.

I was jealous. I was sad.

I tried to suck it up. I tried telling myself with positive affirmations that things were going to be fine. I tried to keep my anxiety relegated to the dark corner of my heart where it should live. I tried to remember all of my blessings and how far Casey’s come.  I tried to not remember the thousands of hours spent in speech therapy with him. I tried not to think about the thousands more hours I have to spend in speech therapy with Abby. I tried to have hope that she’d one day be able to communicate fully.

And then I stopped trying and cried. The frustrations fell with the tears, and I felt myself relax. All of the time I spent trying to convince myself with positive words only made things worse. Letting the frustration go in the form of a very ugly cry does not mean I do not acknowledge the good in my life, of which there is an abundance. It just means that there are different avenues to healing. Sometimes, words just don’t work. I needed to cry.

Both Abby and I stopped crying about the same time and sat sniffling and hiccuping for a while. She got through whatever it was that she needed to be pissed off about and I got through mine. We both threw a nice tantrum and moved on.

For now…

Abby · autism · confessions · crafts · Down syndrome

I’m jealous of you.

I see your posts. You talk about how hard it is to potty train your daughter that is younger than mine. Potty training isn’t even on our radar right now, to be truthful. That’s not going to happen for at least another year or so…if we’re lucky.

I’m jealous of you. 

I see your statuses. How tired you are from running from one sport to the next, then on to birthday parties.  My son can’t play team sports, he gets too overstimulated. He doesn’t get invited to birthday parties.

I’m jealous of you.

I see you at the store, you get away with people not looking twice at your kids- you don’t see that look of recognition- and sometimes of pain- as they notice your child’s extra chromosome. I see you in the malls, walking with your kids, not worried about what next sound is going to set them running in the opposite direction. I see you at my other son’s basketball games. Walking in from the parking lot to cheer for your child, as I sit with my son who is hiding in the back of my car.  His autism fills the space between.

I’m so jealous of you.

You capture every milestone as they come naturally for your child. First steps. First words. I capture those, too. But they are after hours and hours of therapy, sleepless nights and drained bank accounts.  You talk about goals kicked and awards won, I speak of services gained and lawsuits averted. You fought for your child’s place on team. I fight for my child’s place in the classroom.

I hate myself for being jealous of normal.

It’s not your fault you don’t have kids with special needs anymore than it’s my fault that I do. With my oldest, I loved meeting those milestones, even bragged about them a little. I didn’t get it. I had no frame of reference. I didn’t realize how great it was that he developed the right muscles in the right way to sit, crawl then walk. I didn’t get with my other typical developing child how great it was that speech set in without us having to painstakingly draw out language, bit by bit, sign by sign and sound by sound.

And I’m sure I don’t realize how lucky I am to have an autistic son who can talk, and a daughter with Down syndrome that is even as healthy as she is.

Jealousy is a worthless emotion. Even if it pushes you to do more or be more, you’re not doing it for the right reasons. I fight this jealousy.  And, on days like today, I lose.

I’m jealous of you.

Abby · autism · confessions · crafts · Down syndrome

Rage, rage.

My husband took all the kids to Carter’s basketball practice and to get some food so I could have some time alone. I thought I’d clean, yet, I find myself typing into a computer that has come to know me so well.

The things this laptop could say. The confessions I’ve made to people I’ve never met. The sadness that I hold and let out in tiny bits as to not overwhelm, but just enough to keep whatever grasp on sanity I have left.

Life is hard. I do not have the market cornered on sorrow, as I am reminded of often. Being a part of the Down syndrome community is amazing, but it also lends itself to the grim reminders of the fragility of our children, the fear that lurks around every cold, every fever, every sleepless night. Another life lost too soon, and there’s no way to exist in this community without that reminder.

“Death is at your doorstep. It will steal your innocence. It will not steal your substance”- Mumford and Sons

My substance. What am I made of, anyways? Life has found a way to test my resolve, to strengthen my spine, to bruise my knees. And now, as I teeter on the threshold of the great depressive abyss I find myself falling into all too often, I hear the words of too many echo in my brain:

“With everything you have going on in your life, it’s okay to be depressed once in a while.”

No. I will not. Too many times I feel myself being dragged down and I loosen my grip on the ground that I grasp as my only ally. I give in before I fight. Too many times I give every bit of fight I have to battles that are not my own. This time, I will fight.

I will not lay down and, in the words of Dylan Thomas, “go gently into that good night.” Sure, that poem wasn’t about depression, but I feel like it applies. I feel like depression robs me of the light I have in my life.

Do not go gentle into that good night.
Rage, rage against the dying of the light.

So now I rage. I fight. I will do whatever it takes to be FINE. I have too much to give to be robbed of my substance. I have too much to say to be robbed of my words.

and, quite frankly, I have too much to do to be sad.

Abby · autism · confessions · crafts · Down syndrome

It’s Not Your Fault.

I’ve written about the absurdity of the so called “studies” that are finding the cause of autism in everything. They’re correlational studies (in one of my psychology courses, my professor made us all chant “Correlation Does Not Equal Causation!” over and over and over again). They don’t prove anything. I could go on and on at length as to why each of these studies are flawed or why they don’t really say anything more than we already know…but it really isn’t the message I want to share. And it’s boring. If you get nothing more out of my blog than this one stupid sentence, then I’ve done my job:

This is not your fault.

Casey’s autism is no more my fault than Abby’s Down syndrome. Researchers, the good ones, are continually finding evidence that autism is genetic. GENETIC GENETIC GENETIC. And even if it’s not, even if one day they decide that your child’s autism was caused by you drinking Mountain Dew during your first three trimesters of pregnancy (I did that on purpose), or whatever it is that your great aunt keeps posting to your facebook wall…guess what?

This is not your fault.

We as humans want answers. It makes us TERRIBLY uncomfortable to not know why things happen. It’s why so many people join the Anti-Vax Religion. Because even in the face of OVERWHELMING research, ANY answer is better than NO answer.  Because maybe knowing what caused it means that you have any damn control over it.

I know this because I’ve lived it. I was there once, too. I wanted it to be vaccines that caused his regression because that would mean that no longer vaccinating would prevent future regressions. When that didn’t pan out (again, research…) I kept looking along with the researchers to find whatever it was that I did to make Casey this way. Was it going to the dentist before I knew I was pregnant? How about the metal fillings in my mouth? Was it the Mountain Dew? I wanted answers.  I wanted control. With every step I took in that direction, I got another step away from the place I wanted so desperately to be: acceptance.

It comes down to this: If you had known that any of your actions would cause your child’s autism would you have willingly done it (please don’t make this into one of those “I love my child just the way they are pissing matches…this is not what I’m asking here…)? No?

This is not your fault.

When you can get past this, you can move on to bigger and better things. Acceptance is amazing. It doesn’t mean you’re okay with it all of the time, but it means that you understand that this is the way life was meant to be. And that it can be a really great life. Autism included. 

Abby

Abby’s Birthday.

 

There were times I wanted to jump up and down and yell, “Abby’s ONE! We did it! We made it through the first year!” and there were times in the day where I just wanted to hold her and marvel at how good my life is. Abby is a gift. A gift I can’t even begin to tell you how much I’m grateful for. When we were setting up, I couldn’t even talk about her without crying. I’ve just been so overwhelmed at how wonderful this last year has been. It’s had a richness to it that I’ve never felt before. 

I’ve learned SO much. I’m working on that post right now, too. But I just wanted to thank everyone who came for Abby’s party and to everyone who helped with it. I hope I don’t forget anyone, but I probably will.

First off, Heather J. This party would have been NOTHING without her. She made it classy. She’s got an eye for detail and a brain for making sure everything is arranged. I would have been completely lost without her. She even paid for half of the party. I tried to tell her ‘no’ but she YELLED at me, “STOP TELLING ME MY BUSINESS!” I like her. Thank you, Heather. You put so much time and energy into making it great. It would have been so whitetrash without you.

Mikaela J. for ALWAYS being my little helper. She’s so good about coming to my house and helping out and spent most of Saturday being ordered around WHILE she was holding Abby. She’s the sweetest thing and loves Abby as much as anyone (if not more).

Erin H. She came to my house three times on Thursday to make sure I was staying on task. She came and cleaned my house when I was on crutches. She’s always available to do whatever is needed. I love her for that. She had a hugely busy day on Saturday and spent every spare minute she had helping out with the decor, the food, etc. She also took pictures at the party and kept many of the guests entertained.

Misty Kim– made 6 dozen rolls (or so) the last of which I ate the other night and was so sad that they were gone. They were delightful. She also packed her kids up and came to the church at my beck and call to let me in. She helped with the setup, took those AMAZING pictures of Abby and of all of the decor.

Pam, Amy N., Randi G., Jill H. for making and frosting those delightful cupcakes. There were five million of them and I didn’t bake a single one.

Mary T. for bringing her body weight in watermelon and for taking Peyton for a total of 400 hours the week prior.


For Sarah G. and Brian S. along with my family : Katie and Travis (that’s another post coming), Angie and Joe, for helping get the food all ready and for going early to finish all of the setup. Also to Sarah G. and Brian S. who ran back to my house to get the right music playlist on my ipod. Seemed silly, but it was important to me.

To Kelly A. for keeping Carter all Saturday while we ran around and set up.

To Brenda Reinbold for coming early and taking pictures- I can’t wait to see them!

To everyone who stayed after to take down everything another huge thank you.

And a HUGE thank you to everyone who donated to bring Noah home. We recieved $150 at the party and a bunch of other people said they donated online. You guys are the best. It’s truly a great cause for a fantastic family.

Also a big huge thank you to King Henry’s Candy. They supplied most of the candy for the candy bar. Did you try the candy? Did the peach rings taste so wonderful that you have to only buy that brand because now all the other brands taste like ear lobes? Right? And they’re the only ones that make cinnamon bears that are the PERFECT texture.  They’re an awesome company. Next time you stop at a gas station or anywhere that sells them, pick up a bag. I’ll post their website as soon as it’s available (Henry himself told me that they’re working on one. Because we’re super tight now).  It’s so awesome that people are so willing to help other people they don’t know and will probably never meet. Says good things about the kind of business they run.

To Travis, Katie, Angie and Joe who drove all the way from Utah to go to the party. Such an AWESOME surprise. Made the night maaagiiiccccalllll.

Ug! I’m so sorry if I’m forgetting you. Call me on it. Or I’ll be so so mad. My brain has been so fuzzy today, I’m not sure why.

Anyways, the night was an awesome success. It was so perfect. It was to me cathartic. It gave me a couple of months to think about something so fun. To look for cute craft projects and think about decorating. I really needed that. There were some days where it was a welcome break from thinking about things that were hard.

Thank you to EVERYONE who came. I’ve never felt so loved in my entire life. I’m SO grateful for the friends we have in this area. On Sunday we talked about service. Someone said that you get what you give x10. I hope that’s true because it would make our ward very richly blessed for all the service they’ve given us this last year.

I’m positive that Heavenly Father saw our life, our situation and decided that he could send us Abby because for every situation that’s a little bit tough, he’s put us in a place where the love we receive and the people we are blessed to have in our lives make up the difference. And then some. Since Abby was born our ward, our neighbors, our friends, – everyone- has taken her as their own. No one told me they were sorry or that they were sad. No one treated her like anything besides complete ROYALTY from day one. And she is. Princess Abby.