Transcript:

I grew up in a small town where everyone wore maroon and gold and fishing was preferred over any trip to the playground.

It was just me and my brother, so close in age we were practically twins.
My middle school and early high school days were filled with cheerleading and friends and great seafood until I realized that for being so tiny, I was mighty. I was on the first girl’s state powerlifting championship team for my school which ended up opening a big door for me into college. I wanted to be a counselor. I loved hearing peoples stories and I feel like by nature, I am a fixer. I always have been. I knew from a very early age that when you had someone to talk to, someone that could relate to you, problems just seemed easier to bare. For me, good company and a spirit of gratitude was how I tackled most hard things that made their way into my life. But I was also fascinated with the water and thought maybe a career in marine biology would be in my future. I mean, come on guys, who really knows what they want at 18?!

What I did know for sure was that I had a full scholarship to lift for an out of state college that were national champions in powerlifting.

What an opportunity!

It was a culture shock like I never could have anticipated or fathomed. I went from a community where Hispanics were majority to a community where Hispanics made up less than 5% of the total state population.

In my whole life until that time, I had never experienced racism. I didn’t really even know it existed. There were things I heard, endured, well… it was frightening many times but necessary. It was a time that definitely shaped my character and perspective of this world for the better.

It was also a time when the relationship with my body became so incredibly complicated. As a powerlifter, I was always too heavy. Let me be clear. I was 5 foot nothing and 100 pounds and always too heavy.

In powerlifting every pound, every ounce mattered and it was psychologically draining.

Somewhere along the way I ran into my high school sweetheart. Our senior year we had gone separate ways because I had a scholarship too good to let go and he joined the army.

After a few reassignments, he had been stationed just a few hours from the college where I was attending. Let’s get to the point here, I got pregnant and we got married. Those two pink lines were a game changer in more ways than one. My collegiate powerlifting career came to a swift end and so did the scholarship money. The other thing that came to a swift end was my strict weight control. I made up for all those years of watching every single morsel of food that went down my throat by letting myself have. it. all.

As gestational diabetes began to take hold, I began to be very nervous about delivery. I would be delivering my baby girl in a military hospital and I had heard enough stories to have me worried. I never could have guessed that my delivery would be paired with one of the most traumatic days in US history.

I went into labor on a Friday and after 48 hours of hell, I was taken in for emergency cesarean late Sunday evening. Monday was a blur of stitches, and breastfeeding and nausea and beauty in that little face and when my mom called me Tuesday morning to check on me, I was so happy to hear her voice. “Mom, I am doing better. I miss you.”

She said, “Oh my God, you don’t know.”

“Know what mom?” I asked.

“Mija, turn on the TV.”

I turned on the TV with my baby girl in my arms and saw the second plane hit the South Tower.

It was 9/11.

Immediately, the hospital was locked down. No visitors.

I was 19 years old.

It was a steep learning curve for sure but this little baby that I brought home was the epitome of an overachiever. I never paid attention to milestones because she was always a step ahead anyway. She made my mommy life so easy and beautiful. But while she made my mommy life dreamy, my relationship with her daddy was not so dreamy. We separated and he was deployed to Iraq.

With each deployment over the next four years he continued to prolong divorce because his future was so uncertain. He knew that if anything happened to him while deployed, his baby girl and I would not receive any benefits unless we remained married. It was a frustrating time but necessary and I was grateful. After a few moves back home and then away from home again, I found myself waitressing and coming out of another bad relationship when I met a guy. He was kind to me and we had a lot of common interests.

Within two years I was pregnant, and miscarried at 13 weeks.

Then I was pregnant, and miscarried at 12 weeks.

Then I was pregnant, and miscarried at 16 weeks.

The third one, that last one, was a boy. He was bigger than the previous ones and enough weeks along to know he was my son.

I felt like such a failure. Like what is wrong with my body, you know?

I remember thinking this has to be a sign. Maybe God is telling me to just concentrate on the daughter I already have. Pour into her. Be the momma I wanted to be for her. Be grateful for the gift I had already been given.

So we moved on with our lives. There was a proposal. The wedding date was set and the venue was chosen. THEN, two more pink lines and the due date was the wedding date.

I was considered high risk because of the multiple, consecutive miscarriages so the first step was some blood work to see if this was a healthy, viable pregnancy.

Preliminary results showed a possible chromosome abnormality but after a detailed sonography, not only was I told this baby looked healthy and strong, I was told it was a girl. I would have sisters.

After so much hurt and sadness and confusion, I was able to birth my rainbow baby. She was awesome. Slept and ate wonderfully and her big sister was in love. By this point, they were 12 years apart.

It wasn’t until she was about one year old when I started feeling like something was, uh, different. She was sitting up by that point but not crawling or walking or babbling yet but the biggest thing that stood out was that after one year, I had never seen her smile.

It may have been many, many years since my first baby was born but I sure do remember baby smiles and I was missing them. I stayed home with her the first year of her life and I sure did tell the pediatrician every chance I could get about my concerns.

“Don’t worry.”

“She is fine.”

“She will come around in her own time.”

Yeah.

We checked her hearing. She could hear.

We went all in with speech and occupational therapy in the home through an early intervention program which was very hard. My daughter was so frustrated all the time, all day. I can’t imagine what it must feel like to not be able to communicate. I wanted to help her so much but I didn’t know what she needed, what she wanted.

Then there was a time I felt like maybe she was having absence seizures because of the way she would just stare off. Gosh, I just felt like something was very wrong. As I asked around, I was told about a doctor in my area that had worked with children with disabilities for many years and there was a massive wait list. I waited months and months to see this doctor and when I finally sat in that office, so relieved, so ready for answers and help, so thankful for this appointment, she was rushed. Annoyed. She told me that if she knew I was coming with a special needs child she would not have accepted her as a new patient.

“They are just too much paperwork”, she said.

I was so stunned. So sickened. If a medical doctor, a specialist, the one with the most experience and knowledge didn’t want to help me, who the hell was going to help me?!

It was defeating and very scary and isolating.  

I decided to try the neurology route to rule out seizures. It was during a neurologist visit, reviewing EEG results which were normal, that I was told my daughter’s diagnosis, autism. She was almost 3 years old.

My mind was relieved to have an answer. My heart was devastated because it was autism. I didn’t know a lot about autism but I knew enough to know it was a lifestyle that I never imagined for myself, for my husband, for my daughter, for our family. My husband took it exceptionally hard seeing as a father, this was not something he could fix. I think one of the hardest feelings to feel as a parent is helplessness.

We tried PPCD but there were just too many kids. In this particular school district PPCD was run like a daycare and with my daughter not being able to communicate at all, man, it was heartbreaking. It was always a guessing game. I didn’t what she wanted. I didn’t know how to help her. She would cry out of frustration and I would cry out of helplessness and feelings of total inadequacy.

Around that time we were told that in the same district there was a teacher with over 20 years of experience with students like my daughter and the class size was much smaller.

I was hopeful.

I feel like that is a revolving theme with us special needs mommas. No matter how hard, how sad, how defeating, we are always so hopeful. Hopeful this will be the right doctor, the right medicine, the right teacher, the right therapy. Hopeful.

Instead, this teacher called me EVERY DAY to come pick up my daughter.  Her voicemails and emails and calls were filled with, “She is too much.”
“I’ve never had a child like her.” “She is too hard.” “She is too strong.”

Tiny but mighty. Yes.

I brought her home.

What used to be crying out of frustration, became aggression. Almost constant physical aggression. Scratching. Pinching. Hitting. It was so, so bad. So, so hard.  

I had no choice. I had to try the one thing we had not tried because of some outdated advice that I had held on to for years.

I had a distant family member that had worked in an ABA clinic years and years ago when the methods were not as progressive and respectful and kind. I had seen some mixed stories online about ABA and it seemed that over the years the program had changed quite a bit and like everything else, it all depended on the quality of the clinic, compassion of the therapists, and progressive nature of their training.

I went for it and I am so thankful to God that I stepped out in faith.

Hands down, ABA saved us. It saved both of us.

We spent the whole first year working on potty training. For ONE whole year. My daughter is now 7 years old and completely independent when it comes to toileting.

She is talking and learning and socializing. Socializing! It is so hard to put into words how my momma heart leaps when I see her sitting in a group of kids her age. Laughing. Talking. Listening. Such simple things, simple ways we connect with others that most take for granted every day.

We now live very close to my brother who has five children and oh how they love and protect my daughter. She loves her cousins so much.

She has come such a long way and although we still have very hard days, hope remains.

My greatest fear is that she won’t find her way in the world. Everything right now is determined by me. What she does, where she is, who she socializes with. But when I am gone, will she find her own way? Will she feel like she is living out her purpose without me guiding her?

I dream and pray every day that she will soon be able to express all that she feels. I want to know her opinions. I want her to be an active participant in her life and share her life’s experiences with me.

I regret being quiet about all the hard.

Nobody knows that stuff you don’t share. Anxiety. Depression. I now know that that duo came so fierce and forceful because I isolated myself. I thought I needed to handle this alone. No one will understand. How could they? Well, I was wrong.

True healing and community and belonging came only when I decided to share it all. Writing for me has been my greatest therapist and it’s free and it’s accessible anytime I want it to be.

My super small daughter has taught me supersized, BIG, HUGE lessons about myself.

About patience.

About tolerance.

About kindness.

About empathy.

I should have guessed that the person God would use to change my life forever, would be tiny but mighty.