I'm so honored to have a guest blogger share today. I met Trista at #SheSpeaks2018. She is absolutely precious, and aside from being sisters in Christ, we are both special needs mamas. October is Down Syndrome Awareness Month, and Trista's youngest daughter was born with Down Syndrome. She is a doll baby, y'all!
Hurry and make a cup of your favorite coffee, cocoa or tea and cozy up on the couch for this read that will surely leave you blown away and blessed!
“A man’s heart plans his way,
But the LORD directs his steps.”
-Proverbs 16:9 (NKJV)
I thought I had my life all planned out. For awhile, things were going accordingly. I was married to the love of my life at age 23. We moved to another country as missionaries for three years to help start a church with some dear friends. Our first daughter was born when I was 28 and our second just shy of two years after her. We were happy and healthy, not without our struggles, but is seemed as my plans had been falling into place nicely for years.
My third pregnancy started similarly to the others. Nausea all day and night and extreme fatigue. This time around, I had two little girls to chase after which didn’t leave much time to rest. Nonetheless, I was thrilled to be carrying my third baby and was counting down the days until she would be here.
My world came to a halt shortly following the 20-week ultrasound. The baby I was carrying in my womb was sick. The doctor explained she had a large hole in her heart and that often times these types of heart defects are associated with Down syndrome.
Shock set in as his words melted into the deep and dark places of my mind. I stared straight ahead wondering if I was dreaming or if he was mistaken. Did I do something wrong? I could feel my emotions threatening to overtake me as I sat there through the remainder of the appointment.
The weeks that followed brought more appointments, more testing and eventually an official Down syndrome diagnosis for my little girl. I cried nearly every single day that followed in the remainder of the pregnancy. I hadn’t had much experience with people differently abled in my lifetime and this felt completely opposite of my own plans I had set for my life. I had a sinking feeling the moment I heard the confirmation of Down syndrome my life was changed forever.
The days that followed lingered on as I questioned God’s plan for my life I saw unfolding before my very eyes. I couldn’t reconcile the fact that she had such a severe heart defect yet at the same time I knew she was a good and perfect gift from God. How could this be? In my childrearing years, the only thing I had prayed for was for healthy babies. I had two of them and now I was facing one of my biggest fears. A child who was sick, who would need heart surgeries and who was also labeled as differently abled.
Never in my wildest dreams did I anticipate the label for myself “special needs mom.” The thought that this would be my path felt overwhelming and completely unexpected. I knew in my heart that this was the journey God had set out for me and as hard as it was to come to the place of acceptance, I had to hold fast to the truth that His plans for my life were far better than anything I myself could have ever planned.
““For My thoughts are not your thoughts,
Nor are your ways My ways,” says the LORD.
For as the heavens are higher than the earth,
So are My ways higher than your ways,
And My thoughts than your thoughts.”
I clung hard to His truths as I made my way through what felt like utter darkness. I knew He was in control, that He had formed this little baby in my womb and had purpose for her life. Little did I know it then, but that purpose had so much to do with me and changing my own thoughts and perceptions. And yes, my life was changed forever but all in ways for the better.
Her birth was chaotic and stressful and heart surgeries were complicated and scary. Survival was my only concern the first couple of months of her life. We spent weeks in the ICU as she fought for her life. I prayed for God to step in and intervene and heal her heart. But, His plans were different than mine as He showed Himself to me in mighty ways as He upheld my weary soul throughout her first year of life.
Her heart was surgically repaired with two heart surgeries and her little body slowly became stronger and stronger. Life and death situations started to dissipate as her first birthday approached. Therapies took over our schedule and I found myself facing the reality that I indeed had a child who had already overcome so much in her short lifetime and yet had so much more she was up against.
She was considered different and I was forced to face our new reality. It was hard to adjust to the new schedule. It was as if my time was no longer my own and my world revolved around people coming into our home and working with my baby.
It took my while to adjust to it. I realized in the process that God was doing such a huge work in me. That He was using this little girl to teach my things about life I would not have been able to learn otherwise.
The perspective change I had was a big one. Life is short and unpredictable and full of twists and turns one could never anticipate. Yet, God has it all in His hands. He is not far from us even in the darkest of moments where there is hardly a glimmer of light at the end of the tunnel. He is still there.
He is my rock and my refuge in times of trouble. His plans are far above my own and His ways far beyond my understanding. Everything He does is not without purpose and that purpose is bringing me into an even deeper and greater relationship with Him. He has proved Himself faithful time and time again, even in the moments I have wanted to give up. He is still there, His strength upholding me and His arms bringing comfort to my soul.
God has used Bernadette to change me from the inner most parts of my being. He has used her to show me the importance of shouting her worth, that she is a unique individual, created in His own image, set apart for a purpose that only she can fulfill set out by Him alone.
The road hasn’t always been easy with her. The medical issues have been scary and we have found ourselves in our share of hard situations. But the perspective change I have gained and the closeness I have with the Lord has been that which my life has needed.
She is the piece our family was missing. The piece we didn’t even know we needed until she was here. She is big part of our family and I am incredibly grateful for the gift of her life.