I am in a strange season of life. Let me explain.
I remember when Victoria was born in 2008 … being afraid that having a special needs child, and my responsibilities with her, would take away my availability to minister through music within my home church. I have ALWAYS been super-active in the worship ministry of any church I’ve been a part of so, I actually grieved over this fear to the point of tears. But, I asked God to help me walk that road when and if that struggle ever came.
That phase of life has arrived and I have been living in this season for a little while now. It’s hard. It’s hard sitting on the back row … (and I literally mean … THE VERY BACK ROW) of the church. It’s hard being distracted throughout the entire church service with a child who, even though they are nine-years-old … has the understanding of a child much younger than their age. Victoria has no interest in listening to a sermon, so she is constantly moving around and playing during church. I try to grasp for bits and pieces of truth as my pastor preaches, but I question how much I actually retain these days. I wonder how much my other two girls and husband (who is a pastor) glean from the sermon because they are distracted during the service, as well.
As a singer and worship leader, I miss singing on the stage of my church Sunday after Sunday during the worship service and leading in worship songs. It has felt like a bit of a death in my heart to have to “let go” of my selfish desires to be seen and heard on the stage. I’ve been singing on the stage of a church since my elementary school years, so the stage feels like where I “should” be. The stage feels like my home. I almost feel lost and invisible without that ministry opportunity at my church.
This season of un-involvement in the worship ministry at my home church, however, makes me even more thankful that God provides me unique opportunities outside of my church to speak and lead worship at women’s conferences and marriage conferences at random times during the year. Those opportunities truly fill my cup and minister to me in ways that you cannot possibly understand. It’s an outlet for me to share my creative gifts within the realms of ministry to families much like my own.
A “normal” family attending church cannot possibly understand the family who struggles with wondering if it is even worth darkening the doors of the church house when they know how difficult it is to even be there with their child. The family with an autistic child or severely handicap child might decide to not even put forth the effort because of a lack of childcare at the church or being worried that their child will act out in a way that is embarrassing or difficult to handle. Even though my child is not autistic or severely handicapped physically, and only has Down syndrome … I have seen into the worlds of so many special needs families because of the opportunities I’ve had to meet these precious people at so many other churches around the country. I see and understand their struggles, just as I see my own.
It is difficult to go from once feeling like a vital part of the ministry within your church to feeling much like an outsider looking in as you sit on the back row in your own little unique world. The “what ifs” that I grieved about so many years ago are now at my doorstep and I am navigating this detour that twists and turns in ways that I don’t always like or understand.
Don’t get me wrong. I LOVE my Victoria. I love life with her. But, please understand … any family with a special needs child has to put to death their dreams and desires for a time to minister to that child. It’s difficult to do. I’m not going to sugar coat it. It is dead-gum hard. But, it’s necessary and a labor of love.
So, as I make my home … most Sundays … on the very back row of my church, you have to know … that as a musician and singer … I’m not thrilled at the phase of life I’m in. I’m not thrilled at the disconnect I feel most Sundays. But, I know that even though I’m living in the “long days” of raising young kids and a special needs child … this is only a season. A season that I will look back on with fond memories. A season in which I will, more than likely, look back and see that God was walking a little bit closer to me.
I am reminded of a saying that my friend, Gene Stallings, shared with me and my husband when he once visited our church. He told us of his Down syndrome son, Johnny, and said that the two saddest days of his life were when Johnny was born and when Johnny died. I have thought about that conversation with Coach Stallings so many times. While I want to be transparent about my journey and my struggles as the mother of a child with special needs, don’t ever mistake that transparency for ingratitude. I realize that God could have given Victoria to any other family. But, He CHOSE us. HE CHOSE US! We bear the huge burden and responsibility for caring for one of His special gifts.
This time seems to pass slowly. Some days seem difficult. Some days, I miss my former, carefree life. But, this is only a season. And, I choose to give this strange season to God and pray that He brings a beautiful harvest from the time I’m sowing into my family.
THIS IS ONLY A SEASON. Seasons change all too soon. Then, you find yourself longing for the season that once was.
Heather it is so true these seasons pass so quickly and you do such a beautiful job with these pretty girls in this time of your life. I hear your heart friend and this helps me to know how to pray for you.