3 Things I Didn't Expect as a Special Needs Parent

When your child is little, everyone tells you, "They grow up so fast!"

I recall feeling quite the opposite when my children were tiny. Despite my best efforts, I felt disorganized, inadequate, and like I was walking through a mine field trying to manage my children's medical challenges. It felt anything but fast. Emergency room visits and hospitalizations continually derailed plans and made the days long. I worked hard engaging with my kids, fostering creativity and imparting biblical truth. Yet, I was so exhausted that I had no desire to read to them by the time I got them into pajamas.

I didn't expect this

Now that they're each at or near reaching adulthood, I look back and see that those hard, hard years yielded things I could never have anticipated. Here are just 3 of them:

  1. Feeling rich - When you have it all and lose it all due to serious, rare chronic illnesses, you feel anything but wealthy. Both my husband and I were raised in traditional, hard-working families. We were taught that if you work hard, your life will be good. You won't go hungry. Those who work hard get ahead and do well for themselves and their children. The future is bright. But no one tells you what to expect when you are working hard and the medical bills relieve your bank account of every penny you have ever saved. There is no manual for raising a child whose medication costs $300,000 per year. God blessed us mightily by readjusting our worldview and priorities. Clinging to our faith and enjoying one another brought us incredible blessings we never anticipated. The relational problems that most other families face are absent between the 5 of us. Out of necessity, we were forced early on in the kids' lives to communicate clearly and openly with one another. This has built an incredible bond between us. When we spend time together enjoying the simple things of life, we feel like we have won life's lottery. The desperate dysfunction of others chasing after money and recognition makes us sad for them and grateful that God got our attention through adversity. We are blessed beyond all measure.
  2. Boundless laughter - Yes, we freak people out with our dark humor. Joking about internal bleeding, ADHD, arthritis, and having no money isn't what you hear the average family playfully bantering about. People often don't know how to react when we're laughing at the very thing that they think makes our circumstances hopeless. Nevertheless, I have taught other parents and I constantly remind my children, "If you can laugh at something, you shrink its power over you." So laugh we do! We find humor in the smallest things and it only adds to the richness of our lives. While I'm sure we annoy those around us with our volume, I love hearing our home filled with laughter.
  3. The resiliency to live above our circumstances - Only with a growing faith and trust in God have we been able to live above all that has happened to us over the years. This is a gift that comes with no shortcuts. We had to walk through the deepest valleys for the Lord to teach us emotional and spiritual resiliency. Because we never gave up, God has written His story through our lives. By the world's standards, we are insignificant and have no reason for hope. But in Christ, we have an incredible life in spite of anything we may face. There were so many years where I never thought the days would get brighter or the load lighter. Yet, the Lord stretched and grew all of us through every struggle He allowed in our lives.

A pleasant surprise

Too many days when we are raising medically complex or disabled children we feel trapped. It seems things will never get better. Life even feels dark.

Yet, when we cling to God through it all, He transforms. After all, that's who He is! Redeemer, Savior, the One who can use all things for our good and His glory. As we surrender to His way over our own expectations, God removes the superfluous. He ushers us into His very best for us and those we love. I never expected all of the difficulty would yield such incredible blessings. To the world, we look unenviable. In Christ, we can smile knowing, we have learned the secret to contentment. (Philippians 4:12-13)