An Intro to Josie

I share our journey with Josie for any parent who feels the fear and desperation I felt, while we learned of our daughter’s deficits and challenges. If anything, I hope this brings comfort to know you are not alone, and to bring awareness to all, that we ALL are going through something, that every child has their own path and every family their own story.

Becoming a mother has always been my dream. I could never remember a time where I didn’t want to have little versions of myself, to love and raise. I met my husband, Alex when I was 30 and we had our first, Leo 4 years later. He was a peanut and an easy pregnancy. We were ready pretty soon to have another.

We became pregnant with Josie pretty quickly. Like with Leo, we waited to find out the gender of the baby. I can’t explain the thrill and joy I felt when she was born. Just looking at her I somehow knew she was a girl. How lucky were we to have one of each!

She was delivered quickly, bruised and swollen. She was large for her gestational age, so her blood sugar was tested. It was low, and corrected within a short amount of time.

I was surprised on how well she slept that first night we had her home. I woke her every few hours as I was instructed, to nurse her, but she didn’t want to eat. She seemed too sleepy. This wasn’t entirely alarming to me, I remember Leo being very sleepy too right after he was born.

By one am she began to cluster feed, and I thought, ‘Oh good, she is catching up.’ I went to wake her in the morning with no success. A couple hours later; the same. I don’t mean she stirred a bit and fell back to sleep. I mean, she didn’t respond to touch or movement. It didn’t quite register that way in the moment. We were headed to the doctor anyway.

I expressed my concerns. The doctor thought it could be her blood sugar again. He pricked her heel to test it and she did not respond. He sent us to the ER.

And this is when all the fears that may have crossed my mind at one point as a new parent just came over me like a flood. Those thoughts that you brush off because they are silly, ridiculous, and would never happen to you. She just got here. She was three days old. What could possibly be wrong?

We began a week stay at the hospital, with her tiny brand new body hooked up to IVs, monitors that beeped every time her breathing changed, and just a tiny diaper. It took 12 hours of IV fluids before she would respond to stimuli.

The nurses asked me what comforts her, “Does she like a pacifier?”

“I don’t know, I don’t know her yet.”

She had so many tests, and some repeatedly. They would come back fine. She wasn’t responding to any of the pricks, sticks, and pokes. No cries. On some level it was of comfort, but I felt in my soul that something wasn’t right. Alex and I feared the worst.

She finally had an MRI near the end of the week. It revealed that she had a brain bleed at the back and side of her head from birth. This may have caused her sleepiness and inability to wake. But really, they didn’t know. They also mentioned they saw ‘questionable white matter’. They didn’t know what to make of it, but a neurologist would follow her development and monitor.

What the hell does that mean?? I scanned her MRI report and looked up every word trying to make sense of it. When they tested her reflexes and did observations in the hospital, they were happy with how she was presenting. That is what I held on to and put the rest behind me.

We went home thinking that it was all behind us. That it was her bump in the road, and that would be it. As she got older, I noticed her intense reflux which she was medicated for and her refusal to lay on her stomach for tummy time. Whenever we tried tummy time, she would fuss and cry. Most babies do, but she wasn’t building up a tolerance for it. This would later have an impact on her gross motor development.

For her 6 month portraits, she wasn’t sitting up. I remember thinking, not all kids are sitting up at this age.

At 7 months old, my mother said something about her being able to sit up on her own. I remembering saying, “ All kids develop at their own rate.” I think I already knew.

Her ability to fall asleep abruptly stopped around this time too. Josie used a pacifier up until she had an ear infection. She would thrash around and fight it. We tried everything to help her, somethings would work for a night or two, and then just wouldn’t any more. Read in more detail on how we tackled her sleep here.

She was receiving Birth to Three Services by 10 months old. Her assessments indicated she was delayed in all areas of development. This didn’t quite hit me until later on. I always thought her delays would translate to difficulty with reading or something, when she was older. The fear sets in, and you push forward. For other parents going through this, please know, it is ok to cry, it is ok to grieve, its ok to be afraid. My husband processes this differently. He focuses on the positive, focuses on her current gains and talks me off a ledge from time to time. As her mom, I think I just have fear engrained in me, for all my kids.

If you notice in the picture to the right, her legs are stiff and straight. She was diagnosed with hypotonia, muscle weakness and stiffness. She had always been difficult to hold, feeling ‘floppy’. You couldn’t sit her on your hip like other babies. She didn’t hang on. It took a lot of physical therapy to break that tension. The focus at this time was her severe gross motor delay.

Therapist were coming in and out of the house, telling you what to work on with her was overwhelming, stressful, yet helpful. I felt so guilty when I couldn’t get to the exercises. I just wanted to be her mom and instead I found myself feeling like her therapist. It took me a while to realize, this is how I am her mom and completing her exercises felt like I was ‘doing’ something about her challenges.

She sat up on her own at 12 months old, and crawled at 15 months. The fear of her not being able to walk was real. I think it was mostly because of my experience in the special education field. I never saw kids at this young of age. I worked with many older children and adults, as old as 80. That is where my mind would go.

She used a therapeutic walker to properly assist her. She was also fitted for SMO’s (supports around her ankles and feet) due to her ankles sagging in. She had a weak core, and wanted to move just as fast as her brother Leo, who was only 18 months older. She got the hang of the walker, started to pull herself up to stand, and walk along the couch. She finally took her first independent steps on Easter in 2020 at 18 months old. I went to my room and cried with relief. I had watched her do therapy and saw her physical limitations. I had a hard time imaging her being able to walk. Yet, here she was.

Josie’s first two years were quite a rollercoaster. At this time we still didn’t know what was causing her physical challenges. She did say a few words, but it was expected that her speech would be delayed because of her severe gross motor delay. She was diagnosed with Apraxia, which is a diagnosis that does represent her physical limitations, but wasn’t her ‘final’ diagnosis.

I can’t begin to tell you how frustrating it is for doctors to tell you, “Well, it looks like this, but we will have to wait and see.” I have also been told that it is sometimes better not to have a ‘label’. I did wonder about this. Is it better? I would say no. I want to have an idea as to what is in store for her. I want to be prepared for her. And, without a ‘label’ services are not attainable. Insurance wants to know what they have, and it has to be the correct diagnosis or they won’t cover services. I learned this all the hard away, and to fight for the ‘labels’ or diagnosis to get her what she needs. I feel lucky to have the background in special education that I do. I am blessed to have worked with some amazing people throughout the years across specialties (Occupational Therapy, Physical Therapy, BCBA’s, teachers, Speech Therapist).

So many questions remain, but we were so happy she tackled her walking and she would be able to run with Leo. Josie’s story continues, as we go through DNA testing and await the results. Stay tuned.