I remember seeing her pull up into the driveway. I quickly and selfishly began to distract my mind from the reality of what was happening so that I wouldn’t hurt so hard for her. She had just given birth to her first baby after a lengthy, painful labor with no medication and now two days later she was walking back into her home. She walked past the “my lil’ cowboy” nursery she spent hours decorating, past the stacks of newborn pampers and neatly folded onesies and past her bed she left unmade. Her face was long and her gaze was empty. Her belly was soft, stretched and still so tender to the touch. Her breasts were on fire, full and raw from incessant pumping for the baby that did not come home with her and instead was under a lamp somewhere being fed through a tube. She gingerly walked through the kitchen and eased her way into a seated position as softly as she could on a bar stool for dinner. I purposely avoided watching her too closely because the pain, worry, and disappointment she carried was too great. It was visible in the way her shoulders were suspended, high and tense and the way her neck was strained and tight. Her eyes had the look of complete defeat, exhaustion, and total helplessness. She was lost without her baby. Scared. Traumatized. After five minutes of moving food around on her plate she quietly shuffled to her room. She curled up under her comforter with the same blanket that they used to wrap her baby in at birth. She breathed in his scent and prayed, cried, and stared at the empty bassinet next to her bed until she fell asleep.
I should have hugged her and cried and prayed with her that night. I loved her so much that I really could not lean into the pain because I was scared how deep it would run.
This was the familiar scene that unfolded within my own family that played out in slow motion in my head as M.o.C.h.A. two began to share her story with me on a Sunday afternoon.
M.o.C.h.A. two also came home without a baby.
The day of and after delivery brought on a whirlwind of doctors and specialists spitting out phrases like,
“She is having difficulty breathing.”
“She has a flap in her esophagus that is not allowing her to eat normally.”
“She has a heart murmur.”
“A couple of her vertebrae are shaped like a butterfly instead of like squares.”
“She will need a feeding tube.”
The only thing this momma was able to bring home was heavy worry and uncertainty. It fascinates me how some women that have been through trauma or loss feel like they have to be so brave for everyone else. M.o.C.h.A. two was no exception when one of her best friends called her a few days after delivery. This friend had recently had her first baby too so she was excited to catch up with M.o.C.h.A. two and hear all about her new little girl and rave about how special it was to be new mommies together. The last thing M.o.C.h.A. two wanted was to make her friend feel her sadness, pain and all-consuming disappointment so she didn’t answer that call. She watched as her friend’s name flashed on the screen over and over again and as soon as her phone showed Missed Call, she sobbed.
*We quickly realized that we both knew this friend and it was a great way to start the session seeing as we both had such kind things to say about the same person.*
This baby girl would spend two weeks in the hospital and was released with a breathing monitor and an unofficial diagnosis of VATER syndrome. VATER is the acronym for (v)ertebrae, (a)nus, (t)rachea, (e)sophagus, (r)enal and is a syndrome that can only be formally diagnosed when the patient has three of these five body parts affected. She had two.
By God’s grace this baby girl did come home. Although the first few months were nerve-racking with machines and monitors and a wide-eyed momma staring into the dark each night listening for her baby’s breathing, everything did slowly improve and a new normal was set.
The first little red flag showed up when this new baby girl was introduced to solid food. She absolutely could not stand the texture of most foods and was still on a bottle with formula or milk until she was almost two years old.
About this time there was a new discovery as this little girl’s teeth started to come in. Well actually I should say, tooth. A pediatric dental visit confirmed that she had Solitary Median Maxillary Central Incisor syndrome (SMMCI) which is a very complicated and fancy way of saying, she has one front tooth instead of two.
The other really unique thing that this M.o.C.h.A. noticed was the unusual way that her toddler would hold her bottle or sippy cup or any object in her hands. She described to me hands “like a robot” as she held her coffee mug up the way that her daughter does. Oh, but I have a better way for you to picture it. Barbie hands. This sweet girl holds her cups like a Barbie would hold a cup, with straight fingers and inflexible palms. This may sound really cute but in reality it means endless spills and mess for M.o.C.h.A. two, even till this day.
It was during the first years of daycare that M.o.C.h.A. two was encouraged to seek out an early intervention program in her area seeing as now her baby girl was identified as having sensory issues while eating, speech difficulty due to the way her tongue was trained to make sounds against a single front tooth, and her odd hand mannerisms. A therapist from the local school district came out to visit and observe and it was during this visit, with the help of unbiased and expert eyes, that something else was identified. The therapist noticed more defining issues when it came to social interaction, body language, and overall demeanor so she highly recommended that formal testing be conducted to rule out (or in) autism.
*As M.o.C.h.A. two was telling me this story she kept mentioning the therapist’s first name and finally as I put two and two together I realized that the therapist is a cousin of mine by marriage. Go figure.*
When this little girl was four years old she started prekindergarten and was formally tested for autism within the public school system. It was confirmed. A behavioral pediatrician then gave the official diagnosis of autism spectrum disorder (ASD) and pervasive developmental disorder not otherwise specified (PDD-NOS). By this point M.o.C.h.A. two didn’t really have shocking feelings about this and was almost relieved to have clarity as to what she was dealing with so she could research ways to help her daughter the most and best she could.
Although some days Google rabbit holes got the best of her, M.o.C.h.A. two remembers being generally calm. The elementary school seemed to be doing their part and was providing speech and occupational therapy for her daughter weekly and she was able to function in a regular education classroom the entire time. Socially she kept to herself but the social demands of the classroom didn’t seem to directly affect her anxiety level or learning capability. Not gonna lie guys, this made me peanut butter and JELL-OUS. Man, I can’t even fathom Isla being in a regular classroom. I just think this is so awesome and you could tell my new friend was very much aware of how rare this is and was feeling blessed.
Her little girl is confident and verbal with the only signs of speech delay being related to her single tooth. Autism seems to be more noticeable when she has to express her feelings or emotions which sometimes she doesn’t handle well. Elementary years did not bring about much bullying with the exception of a kid calling her Patrick from SpongeBob once. But to this, M.o.C.h.A. two just shrugged and said her daughter did the same. They call it her special tooth and anyone who doesn’t like it or understand it obviously doesn’t know how special it is. Touché.
It was around this time through fourth and fifth grade that M.o.C.h.A. two started accepting that maybe there were things she dreamed of for her daughter that would not come true. M.o.C.h.A. two grew up with three sisters and so naturally she looked forward to having a mini-me who would enjoy shopping and getting her hair and nails done just like her momma.
We talked about our daughters and how insanely hard it is to keep them not only in nice clothes but clothes that they don’t get dirty, or chew on, or tear or don’t take care of. Our daughters could care less about nails or hair or sporting the latest trends from Target’s Cat and Jack. All they want is comfort and convenience. Can you imagine as women if all of us ONLY wanted comfort and convenience and didn’t give a flying flip about what we looked like? But the reality is we both aren’t like our daughters. We do like to have our hair done and nails done and we like to attempt fashion fads and scan celebrity magazines for the most awesome Photoshop jobs and wonder if we can miraculously look like that too. So we know that when we look like we spent hours on our makeup or hair and our little girl has on a shirt with spaghetti sauce stains, a collar that has been chewed to shreds, messy hair that looks like we inserted a bump-it on one side (but we totally didn’t), sweat pants or old tights and shoes that are tattered and worn and probably on the wrong foot… you might judge. That’s cool. You see, we two mommas have already learned a valuable lesson through all of this. We love our daughters so much that we would rather them be comfortable and confident in their own way and how they prefer. At the same time, we know how important it is to not lose ourselves. Even though we are mothers of special needs children we are still women, professionals, wives, sisters, and friends. We have this whole big identity outside of being a mom and we also have the right to dress and live the way we feel is comfortable and makes us feel confident. So if we show up to your party and you see us looking all “put together” and our daughters looking all “comfortable”, just give us a big hug and say “Dang girl, congratulations on your incredible time management skills!” Because let me tell you, with three kids, one with special needs, one that is too smart for her own good and a one year old boy that learned how to walk WAY too soon, it took A LOT. I mean like I had to conjure up magical powers to be at that party on time looking the way I do. Also know that all you have to do is look at June, my younger daughter, to see what I attempted to put on Isla for the party. BUT now it is on the top of my massive laundry pile with Nutella and Gatorade stains that were so nicely and conveniently placed about five minutes before we left the house while I attempted to apply mascara with a one year old sitting on my foot going to town on the toilet paper roll. AND if by some chance we all look like crap when we show up, just take my hand and lead me kindly to the pizza and maybe even sneak me an early candy bag. I will love you forever.
So you can imagine that when it came time for this little girl’s first communion, M.o.C.h.A. two knew that getting her to put on and KEEP on her beautiful first communion dress was going to be like getting the staff of Chick-fil-A to not say “my pleasure” each and every time a customer says “thank you”. Yeah, not gonna happen.
During this particular time her little girl had picked up quite the fascination with all things Batman. So M.o.C.h.A. two’s niece, who happened to have a background in special education, had a fantabulous idea. Yes, fantabulous. They would buy her a beautiful white dress that her momma would select BUT on the underside of the skirt they would stitch a Batman patch so that she could rub it and trace it with her fingers and focus on the patch during the special service. This just made me all warm and fuzzy and giggly inside. I have had to be BIG TIME creative when it comes to Isla in almost every way. It felt awesome to not be alone in this and it made all the things I have done and tried seem just that less “crazy”.
Here is a picture of the “secret Batman” dress…
Then to make the story even sweeter, the same niece had a friend create a special piece of art for this young girl to help her visualize and prepare for the big event. Oh my goodness just see for yourself…
People, Jesus is giving Batman communion because OBVIOUSLY! Man, Jesus is so cool! I am totally not a preacher but for some reason when I saw this picture for the first time all of these ideas for sermons popped in my head. Jesus loves you no matter what you have done! Jesus loves you no matter who you are in private or in public, living with a mask or living in truth! Jesus offers everyone forgiveness no matter the depth or magnitude of their wrongs! We all need Jesus regardless of how strong or “good” we think we are! Just YES! Oh, and if you are a special education teacher I really hope you recognize what this is. It is social stories my friends. Social stories through a comic strip. MAD GENIUS. I have always felt like some of Isla’s greatest teachers and therapists have been her very own family whether they realize it or not and I was thrilled to learn that this sweet girl had a whole group of her own.
( What? You want to stop reading this bomb blog post to google “social stories”? Do it!! They are incredible tools for both the classroom and at home.)
Also around this time there was another family member planning a wedding and asked this little girl to be her flower girl. She agreed but only if she could dress like a silver fox and hold Eevee from Pokémon in lieu of flowers down the aisle. The gracious bride happily obliged. Here is a picture of her “flower girl” ensemble.
It was time for junior high school and when M.o.C.h.A. two just said the words “junior high” I could feel my stomach fall to my feet. I had to drop off Isla one time at a middle school cafeteria for a Special Olympics event and as soon as we entered the front door I thought I was going to puke. I am a grown woman and have been through and seen a lot in my life but I could not walk a junior high hallway before the bell without wanting to run to my mommy and cry. I was squeezing the life out of Isla’s hand as we walked and I started to identify the cliques. There were the dudes that were too cool for school, the girls that were all standing in a circle but not looking at each other because they were too busy taking morning selfies and there were the loners that were run-walking as fast as they could with their ENORMOUS backpacks bouncing behind them. There were two girls in particular that I passed that seriously it took every ounce of restraint inside of me to not bear hug them, give them a blotter sheet for their oily T-zone and just tell them how worthy and beautiful they were and that NONE of this will matter later in life. Ugh! So needless to say, when M.o.C.h.A. two verbally prepared me that she was now going to talk about junior high, a little bit of me wanted to say, “Nah it’s OK. I have enough of the story already. We cool.”
How would her daughter be able to handle such a large school, and switching classes and teachers, and extracurricular stuff and PUBERTY?! Oh, I can’t even…
OK, so first I am gonna tell you about the letters. M.o.C.h.A. two did something that is SO me that I literally laughed out loud. She didn’t know how else to communicate with the teachers on what a special girl they were getting and by special I mean her special interests, strengths, weaknesses, medical history, social oddities, etc. So she wrote letters. She wrote a letter to each and every teacher before the start of every year. People, I wrote a whole book. (insert cry laughing emoji but the female facepalm would also be appropriate here)
Let me give you some background. When you are a parent of a special needs student in the public school system you realize very quickly that your kiddo’s teacher does not spend a cozy evening in July sitting on a fluffy chair with pretty sequins pillows reading your child’s IEP (Individualized Education Program) folder and receiving specialized training on how to teach and manage the behaviors of a student with your child’s diagnoses while sipping Starbucks in a fancy conference hall listening to “We are the World” by Michael Jackson. In fact, they may not get that important folder for months after your child has started in their class.
M.o.C.h.A. two was so blessed that the same niece that helped with the first communion dress had just been hired at the junior high where her daughter would be attending which was such a relief for them both. This niece served as the test reader for these letters and helped M.o.C.h.A. two revise the letters until their tone was honest and kind. She wrote to these teachers that she knew and was respectful that this was THEIR classroom, and they should do what they felt was best. BUT she asked them to watch her girl carefully and let her know what she could do to help in anyway. She tried to describe her daughter’s most prominent academic and behavioral tendencies and then she requested, encouraged and welcomed communication.
Listen, there is a lot going on in the state with special education but if you take time to research the details you will realize that nothing significant is going to change soon. I am not being negative at all about this. I am being 100% real. No, it’s not fair and yes the public school system is not doing enough for special education but cry me a river Justin. Complaining does nothing to help our kids. Trust me. I have tried. We have to become part of the solution. We have to start building relationships with our children’s teachers and paraprofessionals instead of expecting the worst from them and building tension instead. We have to start being very creative in how we approach this because help is not on the way soon. Let’s be a generation of parents that are working with teachers and paraprofessionals to improve our children’s education and let’s start by sharing our stories, their stories, through blog, letters, books, whatever. The majority of our teachers and paraprofessionals are not being trained and it is not their fault. Even though as parents we cannot provide all teachers and paraprofessionals the training they need for all different diagnoses and special needs, as a parent I sure can tell you everything that works for me at home with my daughter. I can give you the best training a person can get, not in autism but in Isla. So teachers, if you receive letters next year, please be patient with us. If we request to meet with you before the school year starts to give you a heads up to all of our kiddo’s social and academic tendencies, please meet with us. We love our kids so much just like you love yours and we want what is best for our kiddos just like you do for yours. And if we happen to write in our letter that STAR testing sucks and is a colossal waste of time for our particular child, don’t be offended. It is probably just a joke, kinda. And if we shamelessly bribe you with baked goods or gift cards or wine to not send homework home with our kids because it is especially BRUTAL, please don’t report us. Consider the bribe a gift and maybe just don’t send homework on Mondays. It is Dancing with the Stars night. Priorities OK?
Junior high also brought extracurricular activities into the picture and to M.o.C.h.A. two’s surprise, her daughter signed up for athletics on her own. When M.o.C.h.A. two was contacted in the summer about volleyball practices she was really taken aback. Could her daughter do this? Should she let her do this? Would the coach be accommodating? What about the players?
What would you do Coach? A player with special needs signs up for your team. What would you do? Oh, and guess what? Your players are watching you. They learn from you. The way you decide to handle this determines the way in which your players will also learn how to handle situations like this in their life. Just my opinion but if you have anything in your verbiage as a coach about character building, these types of situations have seriously been handed to you on a silver platter as the perfect example of how to show your players and your team what it means to be kind, what it means to be respectful, what it means to be tolerant, what it means to welcome those that may not always look like or sound like you.
M.o.C.h.A. two said it just like this, “She had the best junior high volleyball coach ever.”
Not only did this coach warmly accept her on the team, she encouraged her, pushed her, gave her incentives for coming to each practice, loved her and more importantly she rallied the whole team around her. This coach knew that one of this little girl’s fascinations was with Pokémon. So for every practice she attended the coach would keep a tally and at the end of each week she would get Pokémon cards or stickers as her reward. And do you think this came out of the special education budget? (Insert laughter, but like wicked witch of the west laughter.)
This young girl’s birthday fell within the dates of volleyball season and so on that birthday morning, like all other mornings, she trudged into the school half asleep and as she turned the corner into the gym she saw her team waiting for her. They all arrived at practice early that morning and were holding a HAPPY BIRTHDAY poster as they were whooping and hollering and cheering and singing.
Here is a picture of that poster…
These young girls learned some incredible lessons that year all because of a special girl and a coach that was willing to go above and beyond. BRAVO to the parents and coaches of these young athletes. Seriously, if I have learned anything as a parent it is that my kids learn from me every day whether I like it or not. These girls were kind because they have been shown examples of kindness. These girls were thoughtful because they have been shown examples of thoughtfulness. These girls were showing respect and tolerance because they have been shown examples of respect and tolerance.
Basketball was a different story. M.o.C.h.A. two’s daughter was not as coordinated for this sport and instead became the manager. Unfortunately, after a few practices and games, the team schedules stopped coming home in her backpack. Let me just use M.o.C.h.A. two’s words here verbatim, “You have to choose your battles.” Yes sister. Oh yes.
When her daughter wanted to join band, M.o.C.h.A. two again knew that it would greatly depend on the band instructor and it would take a whole lot of patience and time to figure out which instrument was best due to the limitations of her tooth, tongue, and mouth issues. After a rough start, the percussion instructor stepped up in a big way. He took the time. He showed her patience and respect and this talented girl now plays the bass drum for the marching band! I cannot make this stuff up!
As M.o.C.h.A. two shared all of this with me I was so overwhelmed with how much a community and family had come together for her daughter. But nothing impacted me as much as this niece that just continued to pour her heart out into this little girl. One day this niece, who was now working in the same school, overheard and saw some kids bullying M.o.C.h.A. two’s daughter. The kids were trying to pull off her headphones so M.o.C.h.A. two’s niece was quick to come to her rescue. It just so happened that around this time this niece had received word that she had an opportunity for employment at a different school for a higher position and higher salary. She declined. She had it in her heart and mind that she was placed there for this little girl and there she would stay. Selfless. Actually, maybe it’s just true love.
Then just when I thought I could put my tissues away, I asked about M.o.C.h.A. two’s son. Oh how he loves his sister. He cares and asks for her and looks for her as a companion and friend. He is three years younger but plays the big brother role and always looks out for her including making sure she always receives a Valentine’s gift on Valentine’s Day.
Here is a little Q and A with M.o.C.h.A. two.
What do you wish all other moms knew about M.o.C.h.A.s?
– We are different. There is always a reason why we act or respond the way we do. Treat us as normal as you can but then understand if we have to walk away.
You see, as your friend, as your sister, as your coworker, we love you. We root for you and your children. But sometimes the topic is hard for us to handle because we know it is not our reality and we would give anything to experience some of things you vent about when it comes to your kiddos.
How many people in your life really can empathize?
– I don’t know a lot of people that can empathize with my exact life or situation but I know a lot of people who can empathize with the battle, a battle, whatever that may be.
Yup. Here again was that “palm to table PREACH IT!” moment for me. This is how we all relate. This is how we are all connected. We all have a battle. We all need a village.
What have you learned and what can people learn from your story?
– Acceptance. These children will change your life if you let them in. But you have to let them live and love their way. So I will always gladly accept her hugs whenever she chooses to give them and I will happily keep filling her room with Pokémon stuffed animals regardless of her age.
What part of Isla’s book resonated with you the most?
– All of it *giggle* and the overall theme of being grateful. Never taking for granted the simple things in life because sometimes they are the most beautiful.
M.o.C.h.A. two’s answer was the same for these two questions.
What is your greatest fear? What is your greatest prayer, wish, hope for your daughter?
– That she is never alone.
Again, my friends, I am not ready to elaborate on this just yet. It’s way too tender.
The night that I dropped off my book with M.o.C.h.A. two she was headed to a dinner date with her sisters. She mentioned to me a conversation that came up as she spoke to her sisters about the future. She shared with them that as her daughter gets older she realizes that this is going to be forever. She is just now starting to accept that she will eventually grow old with her daughter, just them two. M.o.C.h.A. two told me that as she spoke she realized the impact this was making by the look on her sisters’ faces and as she felt herself getting too close to that terrifying emotional ledge of which there is no return she quickly composed herself and kinda blew it off, like “but anyway next topic. No worries. No biggie.”
I do this a lot and if you are really close to me you probably already know this. Sometimes a topic is too hard, too sad, too much and the truth is we don’t want you to hurt the way we hurt. We don’t want you to lean into the pain like we do because we know how deep it runs and we love you too much to bring you in the depths of the darkness with us. We offer no apologies for this. We just ask for your patience and heart when we are ready to lean in with you.
I want to end this blog post with a big shout out to all of the family and friends and educators and coaches of M.o.C.h.A. two and her daughter that were mentioned here. Your generosity and love and support for this momma and her daughter is visible all over M.o.C.h.A. two as she speaks of you. You are simply the BEST and have not been taken for granted.
I walked back to my vehicle that day and thought of how crazy it was that we knew so many of the same people like M.o.C.h.A. two’s BFF, the therapist, and even a relative of mine who is very much involved with athletics at the school her daughter attends. I started to think of that phrase, “It’s a small world.” But as M.o.C.h.A. two waved goodbye to me, I thought…no.
Maybe God is just that big.
Thank you for reading and taking some time today to view the world with a whole new per-spectrum.
You will be happy to know that the momma in the intro did eventually bring her baby home. He is happy, healthy and made me an aunt for the first time in my life. I love you D. I thank God you two are in my village.
Tell me, whose village are you a part of?
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