Today I made the goal that I WOULD post today. I wrote it on my status update that I was going to blog after Abby’s six month review, which I knew wasn’t going to be fantastic. In my brain I composed the beginning of this post. Several beginnings, as I usually do. I was rushing around trying to make my house not look like it was growing and moving with lifeforms unknown and thinking about stories I wanted to share. I wanted to tell you about the Imagine Autism Walk yesterday and how proud I am of my son for LOVING his autism. A post to end Autism Awareness month. Then I started braintinkering with a post about Listen To Your Mother- a show I’m in this Saturday. How I am in awe of the amazing women I’ve been able to meet because of it. How I’m learning to come out of my own shell blah blah blah blah. Then I started thinking about the shit that has gone down in the last week in the autism and Down syndrome communities and wanted to write a hard hitting angry piece. Just as I started to REALLY steam the doorbell rang for Speech Therapy for Abby followed by her six month review. I promised myself that one of those posts would get written before the day was over.
A review is when you sit around and talk about all of the fantastic gains your child has made in the last six months. You make new goals that your child will not only master, but far surpass in the next six months. Except, I knew going in, this wasn’t going to be that meeting. I knew her speech had stagnated. Abby doesn’t talk. She DOES communicate, but she really doesn’t have many words, and those are rarely heard. She’s said “mom” but has never called me that. I want her to call me mom. I want it so much. We started with Speech. No surprises. We moved to occupational therapy. Surprise. Goals not met. We moved to physical therapy. Surprised again. Goals not met. We moved to feeding. Those weren’t met either.
None. None of her goals were met. We wrote the same plan over again. Same goals. It’s not to say that she hasn’t made progress. She has. It’s just slow. I called Lance and ugly cried while I ate a block of packaged meat. I’m not sure why I’m telling you that part. I was pretty messy. I just straight up chomped into it instead of eating it by the slice on something like bread or in a salad. I felt myself slowly climbing back into my Motherhood Box of Shame that I’ve worked like crazy to get out of. That it was MY fault for not pushing her harder. For working harder with her. He said, “It’s hard for me to feel like we need to push her harder. Sure, we want her to progress, but she’s so much more than can be quantified on an evaluation. She’s so much more than what she can’t do. On top of that, she’s got so much to her that can’t be taught, and I don’t want to take any bit of that from her in the race for goals.” He reminded me of what the last six months have been like for Abby. She’s been really sick. Correction, she’s been patient, upbeat and strong while she was really sick. She’s had surgery that she just barely stopped having nose bleeds from. Correction, she had multiple surgeries all at once, and was up and walking and laughing the next day even though she wasn’t feeling great. She dances through the same kind of allergies that make me feel like a very hateful zombie. She’s amazing. Talking will come. Motor skills will improve. It isn’t a race. She’ll get there in her own time. In the meantime, she is herself. She’s confident and stubborn and spirited and wonderful. That’s stuff that can’t be taught.
I did not meet my goal of writing a blog about Autism, Listen to Your Mother, or anger. Things change. I’m glad they do. I sat down earlier to find that a lot of people had commented on my status with words of support and love for me and Abby and how they’ve had times where there wasn’t progress. I cried as I felt such love from people I’ve never met.
My goal wasn’t met. Neither were Abby’s. Life got in the way. But at the end of the day, I’m so grateful that it did.
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.
Today, by 11am, I had already put my head against my husband’s chest and whimpered, “I’m THAT Mom, Lance! I’m thhhhaaaaaaaat Mom.”
Yup. I’m the mom that schedules her son’s neurodevelopmental (it’s really a thing. Not a fun thing. But a thing) appointment at the same time as her daughter’s first “Rhythm, Movement, Dance and Song” group. Except, I didn’t actually know that was the name of the group or where it was exactly. And, apparently, I didn’t know what time it even started.
I’m that mom.
I woke early and desperately tried to get Casey to get ready. He laid naked on the ground for a full ten minutes playing with the cords to the blinds with his toes and harassing Peyton before I started just putting his clothes on for him. As soon as I started, he realized that he was no longer grounded from the Ipad (we’ve had to implement grounding for headlocks, no matter how light hearted they might seem), and took off to find it. This, while the other boys were hounding me for “sports apparel” (THEIR WORDS, even) for a spirit day at school. “Are you kidding me guys? ALL OF YOUR CLOTHES ARE SPORTS CLOTHES!” I finally tackled Casey down on the stairs and got him to cover up his privates. Another ten minutes of him not looking for the Ipad as I chased him around with the rest of his clothes later, he was ready to go. Lance came down to a scene where Abby is crying because she now thinks it’s cool to force me to feed her (aint nobody got time for that!), and I wasn’t and Carter and Peyton are BOTH screaming at each other about the computer because one of them wasn’t stuck breathless in the clamps of a headlock. I might rethink that policy. It brings the noise level WAY down. Casey was bemoaning the fact that I wouldn’t let him take all eight of his Angry Birds to the appointment. Lance tried to sneak up on me as I was angrily slapping peanut butter on bread and in his tiniest, most scared voice said, “Hey…how’s it going?…” then quickly backed away to avoid getting singed when I breathed fire.
No sooner had I gotten Lance and Casey in the car to go to the Children’s Hospital did Lance call me with, “Uhhhhhhhhhmmm, so…..where am I going?”
I finished getting the other boys their sports clothes for spirit whatever and sat down to get Abby to feed herself while I scrolled through my email. Peyton yells to me “Hey, can I get back on the computer? I’m asking because I don’t want you to be cranky with me. You’ve been very cranky this morning.” Ouch. There is a time in every mom’s life when she realizes that her child is right and needs to reevaluate her methods. If I had only been better prepared no one would have gotten yelled at this morning. Things could have gone so much smoother. Realizing this, I pulled Peyton into a warm embrace and apologized to him for my actions earlier and committed to be the kind of mother that doesn’t ever have to yell.
Just kidding. I did nothing of the sort. I’m not THAT Mom. I said, “You’re right Peyton, come closer so I can punch you in the skull.” For a minute, all was silent as we all pecked away at our various devices. Scary Mommy’s book dropped today. I love her and had to shout it to the world…on Facebook. While there, I totally forgot about the TIME and my boys almost missed the bus.
I’m that mom.
I’m not sure any of my boys had breakfast. I just realized that.
As soon as they were off, I ran upstairs to get myself ready for Abby’s toddler group. Realizing that I didn’t have the *time (*read: desire) to shower, I hastily washed my bangs (I’m a genius!) and pulled my hair into a ponytail. I ran downstairs to do the same with Abby’s hair as she sat looking at her bowl of cereal nobody was feeding her. She’s such a freaking princess. She also really hates having her head touched now. I go two ugly pigtails done and threw on her clothes. Realizing I can’t find ANY socks for me, I throw on the first two I grabbed out of our mismatched sock bin and RAN out of the door (just as Jill Smokler on the TV I forgot to turn off says on the Today Show, “we have contributors on Scary Mommy” and I’m all THAT’S ME! I’M FAMOUS! She mentioned ME! because I am, as you well know, a crazy person).
We get to the university and as I’m running into the building I see another mom running in with her daughter, too. I say, “Are you going to the group here? Do you know what group it is? I don’t even know where the hell I’m going.” And she says, “Yeaaaah, today is the last day of our signing group…I don’t think that’s the one you’re going to…” So I, late now, run up to the Early Intervention office and to a very surprised group of therapists and parents I breathlessly say, “Am I in the right place?” Abby’s seemingly always-nervous case worker comes out of her office. I put Abby down and put both hands on my knees as I pant. Two flights of stairs. I’m as out of shape as I look. I stand up straight and without realizing that there’s a small hoard of cute little kids with a variety of disabilities in the room I all too loudly say, “I swear to you, I’m losing my SHIT.” gasp.
Yeah, I’m that mom.
She takes me down to the music room where I’m relieved to find that I’m not late…in fact, we’re the only ones there besides the music teacher. Man! Am I glad that I didn’t blow this off! She would have had no one come! I introduce myself and fall in love with the very artsy lady that runs the group. She’s very direct. “Oh, I thought you were in our 10:30 group.”
I totally was! So now I wasn’t ten minutes late, but an hour and twenty minutes early. Fortunately she took pity on me and let us stay for her 9:30 class, that soon filled with moms and cute little toddlers. The class is a community class that we get to go to for fee because of Abby’s diagnosis. We’re so lucky, huh? The rest of those suckers have to PAY. The moms in the class were super cool, too. And guess what, NOT A SINGLE ONE OF THEM WAS WEARING PANTS. I mean, we weren’t naked, but we all were wearing sweats or yoga pants. My tribe.
I noticed all of them were taking off their shoes. And their kids shoes. It was a shoe free class. I…I had gotten my socks from the missing sock bin. They not only didn’t match, one was my son’s and one was mine. One was pink, one was stained and had grey toes and heels and “PEYTON” written on it. I couldn’t go barefoot either though, because it’s not summer yet and I have not yet taken the time to shave the hair off my toes. There is much hair.
A “Rhythm, Music, Dance and Song” group is just amazing amounts of silly with a toddler that doesn’t hear well and a mom that has no rhythm and is totally tone deaf. Add to it that the room was warm and we were moving A LOT. I was already a sweaty mess from running up and down the stairs (I kid you not) and having to meet new people (the social anxiety disorder makes me sweat…which makes me or anxious…which makes me sweat more…which makes me want to not meet new people ever because I become a gross filter-free sweat monster). I couldn’t take off my sweater because I didn’t want to be the smelly kid in class. Not that I actually would have smelled, they just would have thought that given the massive pit stains on my favorite grey shirt. (Why do I wear grey? That’s the dumbest thing ever)
I am the mom with ugly hair toes, mismatching socks, and pit stains. But my bangs were clean!
Casey’s appointment finished, and they met me at Casey’s school. I had forgotten to send the paperwork with Lance to the appointment, so now I would have to have the school fax it over. Because I’m that mom. Casey actually WENT TO SCHOOL (this is huge…he usually can’t go back if we’ve messed up his schedule at all…but I think going with Dad made it okay so now Lance is going to take him to all of his appointments he ever has). I take Casey to where his class and three others are practicing for their jazz concert. I walk up to his teacher and principal who are talking together just to make sure they know to call me if Casey decided that he couldn’t handle the upset. As I was talking to his super cute and fantastic teacher, Casey reached up and ran his hand over the sparkles on her sports shirt…right over her chest…oh goodness.
Having already said a four letter word in front of a group of children once already that morning, I decided to hightail it out of there. Which is where we began. Me burying my face in my husband’s chest as I said, “I’m THAT mom.” He patted my back and said, “Nah. You’re great. Also, Abby squished the Rice Krispy Treat you gave her in her hair.”
Of course she did. And of course, instead of going home to clean it out, we went out for lunch. Because I’m that mom.
I wore the thickest pair of rose colored glasses after Abby was born. It wasn’t wrong, and I think to a large extent it was my own naivete and denial. I patted my own back as I said, “Well, I’ve done special needs before with Casey’s autism, I can do it again. I got this!”
But “again” was the wrong word, and as I’ve spent a few more years doing this special needs thing with yet another child, the more appropriate word…the word that carries the real weight of what we’re dealing with is: “too.”
I figured I that I would be okay because I knew my way through Early Intervention. I am well versed in IFSPs and IEPs and all of the other acronyms. I had already had been schooled by life in special needs. But I hadn’t been in Down syndrome. And definitely not in having one with autism and one with Down syndrome, too. I saw the two disabilities as separate from each other. I didn’t think much about doing them at the same time. I didn’t see that they would be added to all of the “regular family” issues we deal with our two neurotypical kids.
Day to day, there seem to be a million little issues. The big issues come, and are mostly related to Abby’s health, but basically, what we are dealing with are small things. Too many small things. Today Abby had her post- op appointment with her ENT. We then scheduled an appointment for another swallow study, sleep study, and another appointment with him before we schedule the surgery to fix her laryngeal cleft. He said he’d work on moving her hearing aid fitting up with the lady who did her ABR and let me know. Tomorrow I have to call and get ophthalmology appointments for Casey (he’s starting to have a little bit of a lazy eye) and Abby. I will make a call to get her in to see an orthopedist because it looks as though she has hip dysplasia, along with the issues she has with her feet and ankles. Her immunology appointment is next week, and Casey’s appointment with the Developmental Behaviorist is the week after that. All four kids have dentist appointments and their yearly physicals in the next few weeks, too.
It’s a lot of appointments. It’s a lot of little freakouts by Casey at home. It’s a lot of frustration by Abby because she can’t always tell us what she wants. It’s a lot of Yo Gabba Gabba turned on too loud so that Abby can hear it.
And, quite honestly, it’s a lot of random pangs of sadness for me. I’m not a sad person and my kids aren’t to be pitied. They are happy and are going to have great lives. There just are times where I’m sad that it’s not the lives I had planned for them. Where I have to deal with what could have been and what is. The tears that came out of nowhere when I was in Toys R Us and realized that no matter how many baby dolls we buy Abby, she’ll never be a mother. The pain I feel when I visit the school and find Casey eating lunch alone. The weight I carry that I’m not quite sure how to take off, or if that’s even possible. And I know well that this isn’t about me. That some might see this ache as selfish, which is fine. It’s real, and something that I have to deal with, too.
Along with the million little hard things, there are enough freaking amazing things that keep a quiet balance of joy in our home. When Abby learns a new sign or when Casey makes a new friend who loves him for who he is. When Carter makes the basketball team or when we found out that Peyton is “gifted” (and also so super crazy). I wouldn’t trade my life and what I’ve learned. I wouldn’t trade the person I have become or even the little people I’m watching all of my kids become. Our family was meant to be this way. I believe that. And no matter how hard things get, it is all offset by the big hunk of a man I call my husband. He makes the hard days not so hard, the good days great. He deals with everything that comes at us much better than I do. With ease, and with patience.
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…
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.
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.
I’ve heard this one a lot: “But…that’s normal for a child with Down syndrome, right?”
Each time, I say, “Yes, it’s pretty normal for a child with Down syndrome to (Insert: have a heart problem/ need a lot of therapy/ need surgeries /get sick a lot).” When I want to say, “It’s not normal for us. This isn’t normal for me. It’s still really hard.”
I have conditioned myself to speak of these things as they are normal. They aren’t normal. Expected, maybe. And that helps me to be prepared. But having my child in the hospital, or going through endless amounts of therapies, or preparing for her to have surgery isn’t any easier for me to go through than if a parent of a “typical” kid goes through it just because Abby has Down syndrome. It all carries the same weight.
Sure, time and experience have worked to strengthen the muscles of my resilience. I’m a little stronger and I feel like I can endure just a little bit more than I could. I watch as people who have children with needs that far surpass Abby’s carry a weight I do not think I would be strong enough to bare. In talking to them it is the same as it is with me: you do it because you have to, you learn as you go. You get stronger. You carry on.
But the weight is still there. At the end of the day it still feels heavy on my shoulders, and wears through to my soul. We all have our ways of coping with the weight. We have religion, we have friends, we have support groups. These things all work to help lighten the load for a time, but no one, no matter how faithful or popular, can go without shouldering the weight on their own, and though we may have conditioned ourselves well, it’s still pretty heavy.
It creeps in as her nose begins to run. At the first cough, the first sign of chest retractions, the first wheeze.
It’s just a cold. She gets a lot of colds. Most are just colds.
Some are not.
There have been five times when an ambulance has had to be called from a pediatrician’s office or even an ER to move her to a place that could better take care of her. Because they were afraid. Once, 911 was called from my mother’s house in Utah because her cold symptoms had gone from bad to worse. Her hands had turned purple, she would not wake up. That same day she was taken by life flight to a children’s hospital. Because they were afraid.
Last month was her sixth ambulance ride. Just a couple of days ago I had to take Casey to get a vaccine (and autism!) and we were put in the room where we had been in December when we waited for rescue. Waiting in that room was Fear.
I live with Fear. It reminds me that this cold could be her next ambulance ride, her next hospital stay. When we are in the ambulances or at the hospital, Fear reminds me that it could get a lot worse. It reminds me of the times I’ve watched situations go from bad to unimaginable for too many families. I know too many families that live with a grief that is what Fear knows brings me to my knees at the first sign of illness.
Fear wears on me. It makes me tired in my bones. Abby’s sick again today. Her dad was sick yesterday, her brother is home today. We have kept her in as much as we can for the past couple of weeks, but we can’t stop the outside from getting in.
And now I sit with Fear, the unpleasant reminder that no matter how hard I try, I can’t keep my own daughter well. Guilt hangs around, too, but that that’s another post for another day. Sufficient to say, Guilt isn’t backing down from his claims that I didn’t do enough. That the Walmart trip to get baby wipes could have been avoided had I just been paying better attention.
I don’t live IN fear. I live with it. In every cough, in every ambulance ride, in every sleepless night. An uninvited guest who stays silent most of the time, but has a crazy ability to shout out Rationality when my daughter’s nose starts to run.
Abby’s pretty much a rock star when we go out. People go out of their way to tell me how cute she is, to talk to her, to be close to her. I love this. Most people see her and think she’s beautiful- and not in spite of her Down syndrome. Abby is beautiful.
There have been a few times where people haven’t been so kind. I’ve written about it before. Most of the time, people don’t mean harm. They come from a generation that thought differently about people with Down syndrome, or they have their own preconceived notions about the ‘burden’ my daughter is on society and me. Sometimes they pity me.
When you get into the clinical description of Trisomy 21 (Down syndrome) you hear words like, “mutation” and “abnormal.” These words aren’t meant to hurt, they are meant to describe. There are other words that usually aren’t meant to hurt, but are still too often used in society at large. I’ve heard a few people use the word “mongoloid” to describe my daughter, a few have used the word “retarded” (in the clinical setting, speaking of specific issues of growth and development, this doesn’t irk me the way it does when I hear people use it to describe HER or in using it in ANY OTHER WAY).
Words have meaning. Using a word like “mongoloid” or “retarded” says more to me about the person saying the words than about my daughter, but they still sting.
When I look at Abby, this quote from Psalm 139 comes to mind: “I am fearfully and wonderfully made.” Abby has an extra chromosome. The expression of that extra chromosome can make a lot of things challenging in her life. But no life is without challenges. Abby is wonderfully made. For what she lacks in words, she makes up for in expression. She may be delayed in several areas, but her ability to love is not hampered.
Abby was made this way. She is not a mistake. She is not a mongoloid. She is my daughter. And I’m grateful for every bit of her- extra chromosome included.
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.
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.
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.
I love the look and smell of REAL garlands at Christmas time. The problem is, the ones you can buy live or fake aren’t bushy enough for me (unless you’re willing to drop some serious coin on them. Did that sound gangsta? I was hoping it sounded gangsta), and making one out of all live plants is time consuming. I don’t like projects that take more than fifteen minutes and crap I have on hand, so I never do them.
just fake garland
This year was freaking GENIUS though, if I don’t say so myself. I bought your basic $10 fake lighted garland from Home Depot. Looked good enough on it’s own, but I wanted it to be bushy and alive and Pottery Barn like.
So I went out with my scissors (because having any sort of gardening implements is just beyond me, and I’m no longer allowed near chainsaws) and cut off branches from my boxwood bushes in my front yard. Yeah. Right there. Just waiting to be crafted with. And you don’t have to have boxwoods (and I had to look up what kind of bush it was…I had no idea) in your yard, anything that is still green now will probably work. Go look at Pottery Barn. Their pricey mantle decor is all fresh stuff. Just copy them. It’s all I do.
Then I came in, took the branches and JABBED them into the garland. If they didn’t want to stay, I’d take one of the little fake branches from the garland (that are wired) and wrap it around. I did this with the garland already on my mantle, so I could work from the middle out, but I don’t even think that matters.
It wasn’t bright enough for me (it never is) so I took another strand of white lights that was half burned out and laid it on top of the garland and then kind of worked it around the branches.
From there, Peyton and I added ornaments. We got a really pretty cheap set from Walmart that had some that were glittered and some that were brown. Sparkly and rustic all at once.
I found when adding ornaments, and someone with real crafting experience feel free to correct me if I’m wrong (and if you are brave), bundling them in groups of two or three just looks better. I also didn’t hang them from the branches, I wired them in deep so they looked more apart of the garland. I used the little silver hooks you use on any ornaments to wire them in.
Anyways, super easy. Took me about 30 minutes total, including cutting the branches (which I really didn’t even have to do, they broke off pretty easily and breaking them off was just a little cathartic).
For the life of me I can’t get the stockings to hang the right way. Maybe that will be a post for another day. Probably not though.
I upload pictures of all of these projects as I do them to my instagram account. In fact, most of the crap on this blog is in condensed form on Instagram. Feel free to follow me there. I’m @mostlytruestuff
Lance: I’m not sure you can put 2,000 lights on that tree…blah blah blah…wattage..blah blah blah engineer…blah blah blah…amps…. Me: Is that a challenge?! Lance: why do you do that? Turn everything into a challenge? Me: Are you threatening me? Lance: hmph.
Yeah suckas! 2,000 lights and one tree that will probably burn this place down in a week because I’ve forgotten to water it.
So then I went outside to admire my work from the front yard and noticed that a bush I had covered with white lights was competing with my tree in the window. So I yanked out all of the lights. At 10 o’clock at night. I still felt like that damn bush was competing, so I went into the garage to find some garden sheers or a chainsaw
(true story, the place we were renting back in Virginia had a chainsaw that I rendered useless by sawing through the extension chord. I tried to tell Lance that it was a design flaw and not user error, because why in the world would you want to be attached to a chord if you’re chainsawing something? I’m telling you, it’s WAY less scary to chase someone with a CORDED chainsaw than a gas powered. It doesn’t matter as much with an edger, mostly because it’s just ALL unexpected when someone comes running at you with an edger. Chainsaws are really quite cliche)
There wasn’t anything to cut the bush down with, but I got distracted super quick when I couldn’t reach something on a shelf. If only I was TWO inches taller. Then I started thinking about who is two inches taller than me. Then I thought about the people who are shorter (and thus, less scary). My brother is two inches taller, I thought, so I sent him a text asking him how tall he was. This of course led me to send him a picture of a doll attacking Peyton in his sleep.
I’m getting new ADHD meds today. Life is going to get less amazing.
But probably more clean.
At least I hope. I have yet to do anything with all of the boxes the lights came in. In fact, I came into the kitchen to clean it and the boxes, and here we are.
Anyways, if you pass by my house and see a tree that looks like it’s on fire, it’s not. Unless it is. In which case, call 911. Thanks.