this is motherhood {too}: a journey through the unknown and undiagnosed.

January 6, 2014, This is Motherhood Too, 4 Comments

Logo_04_21_2014_102726AMMy motherhood story begins on a hot and humid August morning in the beautiful, touristy town of Ossoyos, BC. We weren’t there as tourists, but as mourners.

My grandfather’s life had come to an abrupt end after a downhill battle with cancer.  The morning of his funeral I escaped the unbearable heat inside my grandparent’s small home and wandered out back to the garden. I admired the nourished garden, the full grape vines that drooped heavy with fruit and thought about all the hours my grandfather spent lovingly tending to these grapes and patiently waiting as they fermented into wine.

While enjoying the shade of the garden, and the fresh aroma from the fruit trees, I picked up my camera and attempted to capture the beauty of the garden, the essence of my grandfather. My heart sank and filled with emptiness as I let myself grieve.

Later that day I felt waves of nausea roll over me, so I took a pregnancy test. It revealed that I was glowing from the inside out.

My baby boy was born several months later with fine features just like my grandfather.  My pregnancy had been a struggle as I battled with severe morning sickness and pre-eclampsia through the entire pregnancy. Our little boy was born tiny at only 5 pounds 7 ounces. Feeding complications brought him down to under 5 pounds before we left the hospital.

As our baby grew, it became evident that our boy was not like the other babies. Doctors and specialists pointed out that there was something wrong with him, and he was not ‘normal.’ They lacked compassion and I felt their cold words penetrate my mother heart. They picked at every aspect of his being and pointed out that even his overwhelming happiness and wide smile were symptoms of something; it was not normal. Every doctor’s appointment left me feeling hopeless and helpless. Anxiety started to keep me up at night as I too questioned what was normal.

Finally, postpartum depression and a baby that was failing to thrive led me to Jesus. Though I had called myself a Christian my whole life, I never understood what it truly meant. I had never truly forged a relationship with God.

I learned to turn to God as I struggled with my new role as a mother. I cried, I prayed, and I read my Bible. I spoke to God while I gazed into my baby’s eyes and rocked him to sleep. I thanked God for trusting me with this amazing little boy, for bringing him into my life. God blessed me with many new Christian friends and I turned to them with an insatiable hunger for more of Jesus. I attended church with my baby in my arms and I sang my heart out. The more I focused on God and my relationship with Him the more my anxiety melted away.  I slowly learned to have faith and to trust.

I was content, grateful, and blessed on good days, when I found time to be in His presence. I played with my son and delighted in his giggles and silliness. On the days I drifted away from God, I was miserable as I re-read doctors reports, tried to figure out if my child was meeting any milestones, and tried to diagnose him. The anxiety that rested in the unknown robbed me of my joy.

When I felt weak, I would pick apart my pregnancy: Would things be different if I had eaten healthier?  Exercised more?  Exercised less?  Worked less?  I compared him to all the other babies.  Shouldn’t he be talking more? Smiling less? Isn’t he too happy? Too social? Not social enough? I looked at charts and graphs of his growth and development and tormented myself with the results. My heart sank every time I discovered that there was yet another milestone unaccomplished. My poor baby boy, this blessing from God, became a science project as I tried to diagnose him.

The ultimate test came one morning when I woke up with a bitter taste in my mouth. The name of a rare syndrome came to my head out of nowhere. I had never heard of this syndrome before and didn’t know what it was so I hurried to my computer to search for answers.  As I read through the pages, my heart pounded and nausea swept over me. I fully believed that this was God revealing why our baby wasn’t ‘normal.’ I was terrified. Depression sank in and I didn’t eat or sleep for five days. I didn’t want to play with my son and I asked my husband and parents to watch him. Though we did not have a medical diagnosis, I spent hours in front of the computer trying to figure out what our future would hold.  Would our baby ever walk? Would he need a wheelchair? Could he attend a regular school? Why was this happening? Why did God do this to us? Was God good?

Fear of the unknown made me feel as if I was dangling over an abyss, and I felt that my Lord was not there to catch me. I felt that he had deserted me. I wallowed in self-pity.

this is motherhood too: a journey through the unknown and undiagnosed.

I allowed the relationship I had been building with God to crumble and I questioned whether there even was a God. I abandoned my Bible and refused to pray. My friends prayed for me and I told them to stop – there was no use. For days the pain continued and I was empty and lonely. I was hit with rolling panic attacks that made my face burn and my heart pound. Suicidal thoughts began to creep in.

I couldn’t figure out what was worse – the thought that there was something wrong with our baby or the thought that there was no God. The mental anguish I was experiencing was taking a physical toll. In the middle of the afternoon I cried and pleaded out to God, “please, please, please help me…”

I finally closed my eyes and drifted off to sleep. I woke and reached for my Bible, and God was there, loud and clear: Deliver me and rescue me from the hands of foreigners whose mouths are full of lies, whose right hands are deceitful. Then our sons in their youth will be like well-nurtured plants, and our daughters will be like pillars carved to adorn a palace” (Psalm 144: 11-12).

I felt as if those words were written for me and they spoke to my heart and doused the flames of pain that had been burning. God gently pointed out that I was believing lies. The words sang out from the page: Praise be to the LORD my Rock, who trains my hands for war, my fingers for battle. He is my loving God and my fortress, my stronghold and my deliverer, my shield, in whom I take refuge…”(Psalm 144: 1-2).

He was there. He had never left me. I needed to trust Him and learn to differentiate His words from fearful thoughts.  I needed to turn to my loving God and fortress, my stronghold and deliverer.

More blood tests have recently revealed that our son does not have the syndrome I was once so sure he had; but I already knew that. After countless blood tests and specialists visits, we still do not have a diagnosis for our son. We do not know what, if anything, is happening and if he will ever be ‘normal.’ I have learned to be more cautious when I receive news from doctors.  I have had some very un compassionate medical professionals give me their opinions on what they feel is happening with him, and many of them have been wrong. With no diagnosis and no answers in sight we are still in the dark, but even in the dark there is light, for God is here too, dwelling with us wherever we may go.

By Kristy Da Costa, edited by Michaela.

This is from the collective writing project: this is motherhood {too}. Do you have a story you’d like to submit?

4 Comments

  • Reply Heather Bowie January 10, 2014 at 8:45 AM

    This was beautiful. I’m the mom of a 12 year old who has an undiagnosed developmental disability. So much of this story -the searching, the anxiety, the desperation – sounds familiar. And yes, it’s been quite a faith journey. I appreciate you sharing. It’s always good to know we’re not alone.

  • Reply Amy Hunt January 7, 2014 at 2:06 AM

    It’s such a thin place where we hold our hope and wants, and where He allows certain things to happen no matter what we do, and where we choose to lean into trust no matter what, for *what.ever* He may allow . . . or where we continue to pine for control because we’re just so afraid. It’s not trite to say that God allows all circumstances to happen in our lives to draw us nearer to Him so that we know His heart and can trust Him more fully, and that ultimately we reflect His amazing grace and give Him glory. This is huge, and try as we might to do whatever we can that we think is “good and right” (behavior) as His children, we can never fully perform good enough; He reminds us that He created us as humans, knowing we would struggle to trust Him and flail and flop in our attempts to be good enough. The amazing thing of it is that He invites us to be real and raw, and to be angry and to question Him, and to struggle with accepting everything and see it all as His gifts. He knows this about us and He invites us to accept ourselves. This thin place in our lives where everything feels so heavy and yet choosing Him and just choosing rest in Him, loosening our grip on control, is so freeing. He leads us here; there’s nothing we alone can do to create this kind of rest or trust. To lean into the process that He takes us through is to step into hope with courage. We want rest and we want to trust but hope is risky and it will take pain to get there as our fingers are ever so gently loosened from our grip on the reigns. Rich blessings as He continues to lead you and show you His love, even through this question-filled, disappointing, and scary experience. May Jesus give you His peace and may you be ever more willing to accept whatever may be in trust that all is for purpose, beauty, and grace.

    {hugs}

  • Reply Jennifer Gorman January 6, 2014 at 8:08 PM

    Thank you so much, Kristy, for writing that. I knew from the first weeks when my son wouldn’t smile on time that something was wrong. I fought for answers until he was in second grade, and continued to fight for help for him for years after that. My journey with God raising my high functioning autistic son has always been like walking on a twisting trail cut into a steep mountain side with only the invisible handrails of trusting God to guide me, Sometimes the trail is so dangerous that I can’t look up or I will lose my footing, but when I stop to catch my breath, God shows me the most beautiful things to keep me going: his laughter at 3 running through a fountain causing everyone to laugh with him, at 5, dancing and singing wildly off key in the middle of the aisle to the hymns at church, already filled with the Spirit, and at 16, laying out my cereal bowl and glass and spoon before he left for school because he was so worried because I was sick with the flu, and the beautiful poem he just wrote and read at church. But his future is still scary. I have no idea how he will ever live on his own, his behaviors, social skills, and organization skills might mean that never happens. But when he was a toddler God led me to a women’s Bible study in a different congregation. Most of the women were grandmothers and great grandmothers, a few were stay at home moms like me with special needs kids. Those women’s love and example gave me the strength to keep going from Wednesday to Wednesday. And it showed me I wasn’t alone. All of us women need to be strong in the Lord together, to build each other up, and to heal each other when we are broken. It is what God expects of us.

  • Reply Kali Gillespie January 6, 2014 at 4:15 PM

    Such a vulnerable story, thanks so much for sharing your heart. It’s even harder with so much unknown, I think. Thank-you so much for letting us journey with you Kristy- and Michaela, for sharing the rare perspectives we don’t often see. A total privilege- your son will be in my prayers Kristy, as will you as such a tender, brave mama 🙂

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