The purpose for awareness days are to bring understanding to and knowledge about something that is happening. Typically, people who are shedding light on the subject matter have personally experienced its impact on their life or the life of someone they love. Awareness days are good for celebrating the life of a person in a way that both advocates for and spreads knowledge to others.
National Microcephaly Awareness Day is September 30th. Microcephaly is defined by the CDC as a condition where a baby’s head is much smaller than expected, which can occur because a baby’s brain has not developed properly during pregnancy or has stopped growing after birth, which results in a smaller head size.
Microcephaly is a commonly used word in our home and has been for many years now. We are experiencing how it can impact a person’s life, and we are very aware of both the blessing and challenges that go along with a person we dearly love being diagnosed with Microcephaly.
As this awareness day approaches, I wanted to use the opportunity to share our story along with some things God has taught me through raising my beautifully created child with Microcephaly.
For each of my children, I sense that God has a special plan for his life, and watching that plan unfold continues to be my favorite part of parenting. In fact, it was this aspect of parenthood that drove my heart to desire a third child. I was determined to enjoy every moment with this child as I realized how quickly time had gone by with my other two children.
My husband and I were so excited for the opportunity God had given us to disciple another child. Silas’s birth seemed to complete our family, and my husband and I along with our two older sons were in love with him instantly. This blessing had been given to our family, and I was sure God was already at work planning Silas’s best.
Like most babies, Silas continued to grow and develop, but after about five months he began showing some mild developmental delays that were concerning to me as his mother. Something just didn’t seem quite right.
It was at his nine-month checkup when Silas’s pediatrician looked up at me with an expression that made my heart sink. I knew her next words would confirm my mother’s intuition and begin a journey that I did not want my son or my family to travel.
The following three months were a blur of tests, specialist visits, and sundry appointments too numerous to mention. My husband and I listened to doctors explain that the soft spot on Silas’s skull had closed early, due to the fact that his brain was not growing like the brain of a typical child.
No explanation could be found through genetic testing, MRIs, or any of the other invasive tests that my child underwent. Eventually, Silas was diagnosed with Microcephaly, meaning that his head circumference measured extremely below the normative curve. Opinions about how he would progress or what his future would look like varied, and specialists only wanted to give us a range so broad that I considered it useless information. It was predicted that Silas could experience anything from mild learning delays to a significantly decreased life expectancy.
In the months that followed it was as if Silas hit a brick wall in his development—and so did I, both spiritually and emotionally. I just had so many doubts and questions:
- How could a deviation from “typical” ever be best for my child?
- I know God is all-powerful and in control of everything, so why was He allowing Silas to face these medical and developmental challenges?
- Why would He choose not to heal Silas?
I felt angry and disappointed and overwhelmed and confused and helpless and alone. So I moved into fix-it mode. In the whirlwind of appointments and therapies, my quest for advice in fixing Silas left me with common responses from medical professionals. I would repeatedly hear them say phrases like:
- “You are doing everything you can.”
- “Just keep doing what you are doing.”
- “Just wait and give him time.”
As a person who loves to figure out a good solution, these words were not easy for me to hear. I felt like most parents on the journey of parenting a child with special needs: ill-equipped, overwhelmed, and inadequate.
I would experience some days when life was great and things seemed to come easily: Silas was happy, he learned a new skill, and I felt supported by those around us. On these days I felt the blessings of raising my extraordinary, loving, and special child.
More often, though, I would experience times when things seemed to fall apart. Silas would be crying or screaming—and he cannot communicate to us why he was upset or what happened that had upset him. I needed to go to the grocery store, but I was scraping together a dinner with what I had in the pantry because Silas was not able tolerate even a short trip to the store earlier that day. I was at the park with friends but felt alone because I could not leave Silas’s side or he would dart into traffic.
I quickly discovered that even with all the support and knowledge that can be gained from the world, my own strength was not enough to fulfill the calling on my life to parent Silas. I would have to remind myself that I needed to rely on His strength.
As believers, when we feel inadequate, ill-equipped, or overwhelmed, our first thought should be to turn to God. I am ashamed to say it wasn’t my first response, but I also know from conversations with others that I am not alone in this.
What keeps us from relying on God to be our strength? Below I have listed a few things that have kept me from turning to Him. Maybe you can relate to one or all of these as things that keep you from relying on God for the strength and power that He wants to grant us as we walk through our lives.
1 • An “I’ve-got-this” attitude can get in the way of depending on God at the times when we most need His presence. This attitude encourages us to try to fix things in our own timing and strength.
2 • Dwelling upon negative emotions, such as anger or disappointment, as opposed to learning from them can steal our minds away from God and keep us from turning to Him.
3 • We feel like we don’t have the time to develop our relationship with God, and without an intimate relationship we don’t automatically rely on Him. We are all busy, but our primary calling is to have a heart like His. And in order to do that we have to spend time with Him.
4 • We don’t learn to apply God’s Words to our lives. Just like reading the instructions before trying to put together a toy makes the assembly easier, reading God’s instructions always makes us more knowledgeable about Him and better equipped to assemble our lives the way He desires.
Psalm 73:28 explains how relying on God as we walk through different stages of our lives not only gives us refuge but allows us to tell of His works:
But as for me, the nearness of God is my good; I have made the Lord God my refuge,
That I may tell of all Your works.
The Lord continues to show me that raising Silas takes the daily surrender of myself to the calling God has placed on my life to be his mother. This means having a nearness to Him through a relationship which allows Him to grant me strength in my weakness.
Only the refuge of God can give me the ability to set aside my negative emotions to live a joy-filled life with my family and to bring glory and honor to God at every given opportunity.
When I live in this way, I see the blessings of raising my child with Microcephaly. Sure, there are still days filled with exhaustion from constant care and meltdowns (from him and from me), but I also see how God’s plan is being fulfilled in our family’s life and how He created Silas to be the wonderfully made person that he is.
cover photo courtesy of Pixabay.com
in the Quiver