The Walk of Life

Our son Alex was diagnosed with Pyruvate Dehydrogenase Complex Deficiency (PDCD), a rare metabolic disease, in 1995. At the time we were told there were about 400 cases in the world. A pretty lonely road ahead of us. For a long while, we navigated the waters of this rare disease without much knowledge or camraderie with other families who had children who were on this same path.

What we did have was faithful, loving and encouraging friends who were willing to walk this journey with us, even though they didn’t have first hand knowledge of what this disease meant or personal experience. They kept us afloat in those early days and steady us as the journey went along, bumps in the road and all.

What we did have was a faithful. loving and encouraging God who walked with us and carried us along the way and provided what we needed in terms of medical professionals and people in our lives that buoyed us, protected us, taught us and loved us. Sometimes we didn’t realize it until we were able to look back. Even though, at times, we felt lonely on this journey, we were never alone.

We met the first family with a child with PDCD like Alex around 2003-ish (about 8 years after diagnosis). We kept in touch, shared concerns and joys and saw each other about once a year. A bond was created, a different feeling of connection and help with someone who truly knew the disease to reach out to, to spend time with and come to love dearly.

When I talk to others and try to encourage them in difficult seasons of their lives and remind them that God is with them or that God’s got it, I am sharing truth. God’s truth and examples of that truth from my life. During those days of early diagnosis and navigation of Alex’s disease without a specific support group for PDCD, we were surrounded with love and help and hope. We learned who we were as a family and developed a firm foundation of our new normal. God provided us with His presence and love through people who embraced us and took those unsure first steps alongside us.

God promises to be with us. He doesn’t promise a smooth, trouble free life. He promises to be with us and there is a whole lot of meat to that promise once we actually let Him walk with us.

Let me step back and make sure we are clear. God isn’t a switch that turns on and off. It is US that treats Him that way. We must be purposeful to seek Him in those seasons of our lives that are trials as well as our day to day. It isn’t a magical moment when He comes to us as we continue to walk through our lives with the same “Where is God?” “Why is God letting this happen?” reactions that we have always had.

We choose our responses. Knowing God and trusting that He’s with us, has our back and provides hope NO MATTER WHAT THE OUTCOME informs our responses and takes us from anxiety and fear to confidence and peace.

In February 2013 - almost 20 years after diagnosis and 10 years after meeting the only family we've ever known, Michael, Zachary's dad, told us about a FB group that was just filled with families with kids with PDCD and they were planning their first retreat for November of that year. Excited to find these families and for the upcoming retreat was an understatement!!

It was the most surreal experience to see people from all over the world that we met and became close to online come alive like storybook characters off the page of a book.

Friendships deepened to family ties. Never EVER would we have imagined connecting with so many families who shared our journey...💚

Our family continues to grow and people whose children are diagnosed are now able to find us relatively easily with a Google search.

As it turns out, God was using us without us knowing it. Members of the group had seen some work we’d done to share Alex’s story and were hoping and praying for us to find the group. As it turns out, a family we had never met traveled across the world to stay with us before the retreat and, within that first meeting, have become our dearest friends, truly family to us and have changed our lives. Their son with PDCD is about 12 years younger than Alex.

Sometimes when we choose to trust God, it feels like we have to wait for an answer. Sometimes it is easier to look at what we can see and control and we put our trust in our own ideas and feelings instead of truly trusting God. We place our faith in other people. We lose sight of God’s ability to provide for our every need. We forget the nitty gritty that He aches with us, knows us completely and created us to love Him and for Him to love us.

In our trials, we let Him get far away. Make no mistake, the enemy loves, loves, loves anxiety, fear and our own spinnings in our difficult seasons. His strategy is to bully us every day by bombarding our minds and looking for us to react to our situations in unholy ways.

We are so human. God knows that. He also knows that trusting Him takes practice. Our faith muscle needs a regular workout to develop muscle memory. That is what will pull us to responding to life by trusting God versus an anxious response. Thus His desire for us to be in His word. The place we get closer to Him. The place we learn about His promises and read examples of how He has kept His promises.

The week before Thanksgiving, our PDCD group had our second retreat. The excitement to see new and old family members, hug, touch, fill each others' hearts, miss desperately the ones who couldn't make it this time, encourage one another and not want to let go ....is the same! Siblings of our PDCD kiddos who've grown up together connect in their own ways as adults and the younger ones are warmly embraced as they journey. Grandmas and Grandpas felt the healing salve of hope for their children and grandchildren.

God has blessed us richly. He has been faithful in this journey. When we felt alone, He was there. He knew others would come into our lives in ways we needed - and in ways our presence was needed for them - in His perfect timing.

God’s hope is eternal. He is with each of us. His love is steadfast. His vision of what is ahead is clearer than ours. We walk by faith, and not by sight. The Lord your God is with YOU, He is mighty to save. He will take great delight in you, He will quiet you with His love. He will rejoice over you with singing - Zephaniah 3:17.