(By Laura Silva)
I asked the doctor to be excused and I walked out of the small emergency room into the large atrium of Sick Kids Hospital with my baby girl in my arms. That evening the hospital was crowded. I saw no one. It was difficult to think. As I held her tightly, all I could do was cry out to God. The tears flowed down my face. My five-month-old daughter, Rebecca, was diagnosed with a deadly disease called Spinal Muscular Atrophy Type 1. My world and my dreams for her came crashing down.
I’ve learned in a very short period of time that I am not in control of certain events in my life. It began the day of her birth. That day was mixed with pure joy and fear. The beauty of having her little body placed on my chest and the sound of her cry was surreal. She was mine. The love that I already had for her was so great. Rebecca was born naturally and she had a tough time entering this world. That’s where things started to spiral. I had experienced a postpartum hemorrhage following her birth. I remember having a difficult time breathing and then losing consciousness.
I awoke to doctors and nurses fervently working on me. My breath was slow and I knew my body was shutting down. I remember gazing into my husband’s eyes and saying goodbye. Images of our little family crossed my mind. Shortly after code blue was called, I felt life coming back into me. I felt God’s hand upon me. He saved me. I knew there were many prayers lifted up in Jesus’ name in those moments. May 30th was a day of miracles. My baby girl was born and I was saved from death.
I give thanks to my Lord for pulling me through and keeping me earth-side so I could care for my new baby girl. Little did I know that the battle would continue. My newborn baby was always crying. Her muscle tone was quite low. Her strength was limited. Her swallow was weak. Adjusting to motherhood was very difficult, to say the least. I had always dreamt of the day when I would be a mom and have a perfect home life. But in my gut, I knew something wasn’t right.
Rebecca’s diagnosis of SMA was equally just as difficult for me as her birth. God saved my life and I know He can do the same for my daughter. Doctors have told us she may never walk and are unsure of her life expectancy. We thank God that we live in 2020 and there are new medications that help her gain strength. If Rebecca were born a few years ago, she likely would not have survived past her second birthday. The diagnosis left me feeling pain, disappointment, and despair. Added to the struggle was the fact that the medication, gene therapy, is not available in Canada and the cost of the treatment available in the U.S. was priced at $3 million dollars.
Needless to say, our lives have changed drastically. Although we feel like all is chaos, God remains in full control. This situation has been permitted by Him. Rebecca is His child and He has entrusted her to our care. “For You formed my inward parts; You knitted me together in my mother's womb. I praise You, for I am fearfully and wonderfully made” (Psalm 139:13-14). Rebecca has had such an impact on our lives so far. She’s our little blessing from God. I love her with all my heart and I am so grateful to be her mom.
Two months have passed since her diagnosis and I still don’t have the answer as to why this has happened. I may never have it. Rather than asking why, I’ve changed my thoughts to what. “What do you want from my life Lord? What do you want for Rebecca’s life?” My struggles and suffering has brought me closer to my heavenly Father and have made me cling to His Word daily. I’ve passed over the pen and I am giving Him full control to write my life’s story. God is shaping the way and I feel as though I’m set on a road that I must follow. I ask for His mercy for our family daily.
The song “Blessings” by Laura Story rings true in my situation.
"What if my greatest disappointments,
Or the aching of this life,
Is the revealing of a greater thirst this world can't satisfy?
What if trials of this life,
The rain, the storms, the hardest nights,
Are your mercies in disguise?"
On those tough days, when I feel utterly defeated, I’ve learned to lean on God. “Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast” (Psalms 57:1). He brings a sense of peace in my heart. My comfort is knowing that He is always by my side. He never leaves or forsakes His children. He is giving me just enough strength and hope for each day. He is guiding my husband in the direction to lead our family. He is protecting Rebecca and giving her physical strength. I have hope in what is to come. I’ve learned that hope is the “anchor of the soul” (Hebrews 6:19). I know that my story will be used for God’s glory.
Have you not known? Have you not heard? The everlasting God, the LORD, The Creator of the ends of the earth, Neither faints nor is weary. His understanding is unsearchable. He gives power to the weak, And to those who have no might He increases strength. Even the youths shall faint and be weary, and the young men shall utterly fall, but those who wait on the LORD shall renew their strength; They shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. Isaiah 40:28-31
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