Her Name is Natalia, she will not fall (Part II)

Like any new mom, I had a few general challenges.

Breastfeeding was one of them, it was much harder than I expected.  I got sick a few weeks after giving birth which added to my struggle with breastfeeding because of the meds I had to take. I will share these and other first-time mom struggles at another time. For now what I want to share is what we learned about our daughter’s health that rocked our world and my relationship with God.

Natalia was a fun, joyful, energetic baby, we enjoyed every moment with her.

At 9 months her doctor looked at me and said, “Are you feeding her?”

“Of course!” I said.

Still, you can imagine how upset and humiliated I felt. She was questioning if I was taking care of my sweet girl whom I love more than I could explain.

She shared that Natalia was not meeting the expected standards of growth. When this happens, it’s called “failure to thrive.” Doctors say children fail to thrive when they don’t gain weight as expected.

Many things can cause failure to thrive, but this was all new to me and very unexpected, so I felt like the biggest failure as a mom.

To help with her growth the doctor asked that I would supplement and add calories to her meals. I was given a list of ideas of how to help her gain weight and I had to take her every month to the pediatrician to monitor her weight. I felt guilty, judged and wrestled with how best to help her, I was constantly questioning what I could be doing wrong and I also felt alone.

In addition, Natalia struggled with certain foods in her mouth. She wouldn’t tolerate some textures and would gag while eating. I was a new mom just was trying to figure it all out.

Every month I would faithfully go to the pediatrician to make sure she was gaining weight and growing. Natalia was content and thankfully would slowly gain weight. At the same time, we began to notice that she was struggling to walk and unable to hold her weight. Generally, doctors start to be concerned about walking issues after 15 months.

Well, 15 months came and went. We didn’t have health insurance at the time, so we saw an orthopedic doctor at the county hospital. She saw her for 10 minutes and wasn’t concerned. (That’s a whole other story in itself.)

But a mom knows. A mom’s intuition is what has helped me speak up for the needs of my kids. At first, I was afraid because doctors seem to know it all. I quickly learned that our kids need us to be their voice, to advocate defend and fight for them.

We pressed on and at her 18 months check up, a new doctor addressed our concerns. Natalia wasn’t walking, her muscles were weak, and she was still underweight.

The pediatrician said, “I believe she has low muscle tone.”

I remember thinking, “What is she talking about? and “I need to google this asap!”

The doctor explained what she was thinking, then referred us to ECI (early childhood intervention) and a neurologist for further testing and to help determine a diagnosis.

We had to patiently wait for ECI to evaluate her. It is a statewide program for families with children birth up to age 3, with developmental delays, disabilities or certain medical diagnoses that may impact development. When they finally visited our home, they confirmed her need for a PT (physical therapist), OT (occupational therapist), speech therapist, a nutritionist and a referral to an orthopedic clinic.

At around 21 months the PT evaluated Natalia and diagnosed her with hypotonia, a state of low muscle tone often involving reduced muscle strength. Then her OT diagnosed her with Sensory Processing Disorder, a condition in which the brain has trouble receiving and responding to information that comes in through the senses. Some people with SPD are oversensitive to things in their environment, one example is her struggle with the texture of certain foods.

My world was immediately turned upside down. She was my first baby, my wonderfully made child. The one I had prayed and given to God to care for.

“Why would God allow this to happen?”, is the question I would wrestle with for months and months to come.

We quickly had to adapt to a new normal. A life with specialist and doctors asking us the same questions over and over. People coming in and out of our home weekly and teaching our baby girl to do things needed for her development and growth. She got her first pair of SMO’s (braces for her feet), at 22 months and her first visit to the neurologist at around 26 months.

I cried a lot those months, I was in denial, blamed myself but held to hope that the neurologist would change the diagnosis.

The neurologist appointment finally came, and he confirmed her diagnosis as hypotonia and possible mitochondrial disease. He told us she would struggle with gross motor delays for the rest of her life. That she would struggle to run, jump or develop like kids her age.

Also, that day was the first time we heard, “Your child has special needs.” I felt the pain of those words. When the healthcare worker said those words, I angrily looked at her and said, “My daughter does not have special needs!” Looking back I am embarrassed about my attitude, but it is honestly how I felt at that time. I was upset and felt helpless.

This season of life caused me to go on a spiritual journey that challenged the core of my faith. I was angry with God and with myself. I was confused because I trusted God with my daughter’s life, and He had not cared for her like I thought He should. My heart was sad for the pain, tests, therapy etc. that my daughter had to endure and this only fueled my anger towards God.

I want to be clear that I didn’t curse God or leave my faith, but it was shaken. I wanted to know the WHY this had occurred.

“Why didn’t I take better care of myself during the pregnancy?” and “Why would God allow such a challenge for our daughter and family to face?”

My questions and anger led me to tell God, “I will take back my daughter, the one I gave you and prayed for because you couldn’t take care of her. I will care for her now.” Words and attitude that would only draw me further away from God and honestly didn’t help. My heart grew hard and bitter. This went on for months. Sorrow, anger, questions, exhaustion from meeting with a different specialist and all over again. I felt so alone and only had a few people that I trusted to share what I was really going through.

Ironically enough I was dying to draw close to God and experience His comfort and direction. I was drowning in the storm but refused to be rescued by Him. This went on for over a year, my heart was heavy and hard. I might have seemed to others that I was ok, but I was hiding a lot of my true feelings.

God in His goodness and grace kept pursuing me through His Spirit and the prayers and advice of a few close friends.

One friend took me to a story of Jesus healing a blind man. You can read the story in John 9.  There the disciples asked Jesus a question I had been asking myself, “Rabbi, who sinned, this man or his parents, that he was born blind?” That is what I was asking over my daughter’s health if I had caused this. But Jesus response was what really began to stir answers in my heart.  He said, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.”

I heard God say to me, “I am telling a beautiful story through Natalia’s life,” and then He asked, “Will you join me in telling her story or will you sulk the rest of your life?”

Whoa!!! I was confronted with a decision to make. Honestly, at first, I said, “I will sulk!”, but that was just out of bitterness. I knew that I couldn’t do this alone.

God used the story of the blind man to begin to soften my heart and to teach me that He knows Natalia better than I do. He wonderfully made her and can take care of her better than I can. This was not a punishment, but He has a plan and a purpose. Through her life, He will display His works by His goodness, compassion, healing, and power over her. It’s not how I would have planned it but that doesn’t mean it is not good.

In the story Jesus chose to heal the blind man, in our daughter’s case, He has chosen not to, this does not mean He can’t or that I don’t see His goodness daily in her life. The question God has led me to is, “Will you still trust and worship Me even in the struggle, in the storm, in the pain, or when I chose not to heal?”

I spent a long time sulking and angry, what I needed was to surrender my feelings to Him. When I finally began to let go I was able to move forward with how to best care for my daughter’s needs. Acceptance led me to change.

This is a lifelong journey, I continue learning how to care for our daughter, every season comes with new challenges and growth. There are days when I pick up those feelings of anger but I quickly run to the only One that can give me comfort. Through the years God has given me comfort through verses that I pray over our daughter. One of my favorites is Psalm 46:5, “God is within her, she will not fall…” I am a witness of seeing the many ways He holds her and our family as He writes the chapters of our lives. 

Join me in my next post to find out what hypotonia does to Natalia, the therapy she has done, where she is at now but most importantly how God has not allowed her to fall.

Stay tuned to the next word…