She came home without a baby.
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.
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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.
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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…
15 comments
Thank God for you Lisa… you gave my story a voice. I can be my daughters voice anytime, thank you for being mine
Beautiful. Through this blog I see the strength and faithfulness you all endure and it is truly admirable.
This amazing little girl has given me so much purpose; in life and in my career. I’d go to the ends of the world to see my little cousin happy. Thank you for sharing hers and my aunts story.
I loved it!!! Am here crying my eyes out .. proud of you my sister for the mother you are to our angel,you are a good mother to both your babies.you describe her just the way she is as she was growing up till now. Love you so much..
♥️
I’m at a loss for words… utterly beautiful and beyond inspring. This family is the definition of strength, love and encouragement. Thank you sharing their story.
The unsung hero… Amy you just totally rock.
Thank you Mocha Two for sharing your amazing daughter with us! There is so much love in the act of recognizing all that you and your family can do and conform to your daughter’s tendencies. I felt all warm inside with the added touches of Batman. Big props to you!
Lisa, we appreciate you. We love you. You’re amazing, I am gladly a part of your village
Truly am inspired from reading these stories, so very proud of the mother you’ve blossomed into Prima, you got such an awesome team and that alone is awesome, Bella has grown up to be such an inspiration to others, may our Heavenly Father continue blessing and guiding you in this journey you are going through, always know your not alone, love and hugs
Mandy your one of the bravest mothers I know! Bella is a blessing and so much fun to be around! Lisa wow I know your blog is going to touch many lives! Stay blessed
Love you all
You go girl! Woman are phenomenal. Beautiful, testimony of Bella and you. I’m so proud of you and that strength that God gives you and your family.
Go Bella go!!!I love you”
This is definitely a feel good story!!! As an educator, those little letters or sought out moments to tell the teacher what it is that could help their child is what I yearn for. It’s not exactly comfortable bring up a child’s disorder to a parent who I haven’t personally met. Also, sometimes through all the craziness during the school year we do need a little update whether it be because of meds or new skills learned or something that is being implemented at home. Those are all things we do not know as teachers unless we are told. Communication between parents and teachers are what our students need to be happy in school and grow academically /behaviorally. Thank you for sharing your story MoChA Two! Your daughter is blessed to have such a supportive village in her life! Thank you volleyball coach for reminding me, it’s the little things that mean the most! I’m definitely gonna take that and run with it!
Oh, Mandy…what an amazingly well written testament of your life with beautiful Bella. You are such a wonderful mama to both kiddos, and an inspiration to many! I wish we lived closer so that I could share in all that is you more often! I love you chingos and am so proud of you! Hugs…