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.
It started out as a normal Friday. Elyssa and Natalie had “jeans day” at school, so they were excited to be out of uniform. They picked out their jeans and wanted to wear their new volleyball camp t-shirt that they had just gotten from the University of Mobile Volleyball Camp. Victoria (8-years-old) had “out of uniform” day, so she got to wear a hot pink shirt with matching black tights with hot pink stars all over them. Everyone was dressed and ready for their day. Hair and teeth had been brushed. Now, the girls had free time until leaving for school.
Elyssa (10-years-old) was watching a newer Star Wars computer generated series on Netflix. She is really into Star Wars now! Mark has educated her on “the force” and watched all of the old Star Wars movies with her. So, she was occupied with that and basically, was forcing Natalie (9-years-old) to watch it since Natalie was in the same room. Poor Natalie.
Victoria still needed to write her spelling words for the day, so I took her into her room to do that. Victoria has an old-timey school desk in her room in which she can sit to do homework. She sat in her desk, pencil in hand and began to trace the words, “give” and “have” that I had written out for her with a highlighter. Victoria had my phone on her desk and was watching videos that we had filmed on it while she was writing her words out. I left her to write her words and eventually, she got up and closed her bedroom door. That is no surprise. She closes doors in our house all the time. And, after she closes the doors … she usually locks them. I am constantly getting onto her about locking doors.
While all three girls were occupied, I grabbed my purse and began to pull out one-dollar bills for the girls to pay for their school lunch, jeans day, bake sale, etc. I noticed that most of my dollar bills were gone now that I was giving them all away to my kids. Oh well. Such is life with three elementary school-aged kids!
Mark was in the shower. He was getting dressed to take the girls to school. He had been out of town all week for a conference, so the girls were excited to ride to school with Daddy today. I was in my usual Disney ball cap, t-shirt, shorts, and tennis shoes. I was staying home most of the day, so I was not yet “dressed up.” It was almost 7:30am, so I started calling the girls to get their book bags ready for school. They usually leave for school around 7:35am, so I wanted them to be ready to go when Mark exited the bathroom. Elyssa and Natalie were done with their book bags, so I headed to the front bedroom to get Victoria and pack up her homework. When I arrived at the front bedroom door, it was locked. No surprise! I stood on my tippy-toes to reach the door key that we keep above the door frame. I found it with my fingertips and took the key down to open the door. Once the door was open, I saw Victoria’s homework laying on the carpet, all completed. I saw my cell phone sitting on top of her made-up bed. But, there was no Victoria in the room. I called her name, thinking she was hiding from me. Then, suddenly … my eyes caught view of the front bedroom window. Even though the blinds were let all the way down, I had opened them to let the sun shine in. I don’t know how, but somehow … deep inside me … I could tell the bedroom window had been opened. I, then, could clearly hear birds chirping from our front yard. I immediately panicked. I knew Victoria had gone out the front window. I yelled her name while I ran to the front door of the house. I opened the door, yelling her name … no Victoria to be seen. I ran down our front sidewalk calling, “Victoria, Victoria!” I didn’t see her anywhere. I tried to look as far as I could down the street sidewalk … just trying to catch a glimpse or her possibly walking down the sidewalk. She had done that once before … getting several houses down from ours and I had to run down there to catch her. I don’t know what it is about Down syndrome children, but most of them seem to have elopement issues. I’ve read stories all the time of other parents who have dealt with the same heart-stopping panic that I was feeling. I still couldn’t see Victoria. Elyssa and Natalie were crying and yelling Victoria’s name with me in the front yard.
I knew I had to get in my van and look around the neighborhood. Elyssa and Natalie ran with me to the garage. All of us were in a panic … halfway crying and yelling. I opened the garage door. There was no sight of Victoria on that side of the house either. So, I jumped in my car … telling the girls to stay at the house with Mark. Mark had just gotten out of the bathroom and realized what was going on. I started my van and began slowly backing out. I put my van window down and continued yelling Victoria’s name as I eased down my driveway. I still couldn’t see her down the sidewalk as my van pulled closer to the street. I looked to my left and to my right. Then, I saw her. Victoria was to my right. She was walking right in front of her bedroom window and had, apparently, been walking by our backyard fence on her bedroom side of the house. Even though I had finally found her, my heart was still beating hard in my chest. I put the passenger window down and called her name again. I told her to come over to my van. She got in the van and I immediately began telling her how scared she made me. I explained that I had no idea where she was and that she should never go out her window or even go outside without me or Daddy. She put her head down, knowing that I was very upset. She could tell I was in a panic. I told her that her sisters and I had been crying and calling out her name everywhere. We were all scared that she was hurt. This is not the first time something like this has happened before, so she has heard this speech many times in the past. Those are horror stories for another day.
I pulled my van back into the driveway and then into the garage. Victoria got out of the van and I took her into the kitchen. I sat in front of her while she stood with her face close to mine. I, basically, repeated everything to her that I had just said to the in the van. Her face was downcast and, again, she knew I was upset. She began crying. Elyssa and Natalie were standing close to me. We all hugged Victoria as she cried. We even cried with her and told her how much we love her.
The girls grabbed their backpacks and headed into the garage to load into the van to ride to school with Daddy. As I stood beside the van in the garage, I looked into the eyes of Elyssa and Natalie. I felt so thankful that God blessed me with two of the most caring and protective sisters that Victoria could ever have. I grabbed their hands and told them how much I loved them. Then, I looked at Victoria, snuggled into between her sisters in the 2nd row seat of the van. I grabbed her hand, reiterated to her that we all love her so much and just want her to be safe. She put her head down once again, signifying that she was sorry. Then, just like that … Mark began backing the van out of the garage. They were off to school.
I wish that experiences like this didn’t happen in our family. I wish I wouldn’t have to feel heart palpitations every time I am unable to initially locate Victoria in our house. But, such is life with a special needs child. You try to do everything in your power to protect your child and prevent dangerous situations from happening, but there always seems to be some sort of loophole. Maybe this just causes me to pray a little harder than some people and maybe, just maybe … I recognize, a little more often than most, how much I love my family. It doesn’t take me long to realize how blessed I am to have a wonderful and caring husband, two of the sweetest and most caring daughters who are such big helpers to me (and great protectors to their baby sister), and the most special gift God could ever give our family … Victoria.
Mother’s Day. It is such a special day to all of us. Not only do we reflect on the wonderful mothers we had or still have with us, but those of us blessed with children … we thank God all over again for the privilege of being a parent.
This Mother’s Day, I shared a song at First Baptist North Mobile that sums up all of the special thoughts that I know I have thought as I’ve seen my own children growing up. Take time to listen to this song and lift up a prayer of thankfulness for your children. Renew again your commitment to raise them as the Lord would have you do. It is worth it to be a GREAT MOTHER!
Happy Mother’s Day!
VIDEO: “When I Leave the Room”
As we near Valentine’s Day, I want to encourage you with a powerful passage of Scripture.
This is TRUE LOVE folks …
Romans 8:38-39 (The Living Bible)
Who loves you more than anybody else?
JESUS!
All three of my girls have been quick to answer Mark’s question with that wonderful name for several years now. Even Victoria … though she can’t speak well … when Mark asks her that question, she signs the name “Jesus” with her hands. I pray that as my girls get older and experience more of life, they will come to really believe and cherish the fact that Jesus DOES love them stronger, longer and more deeply than anyone else ever will be able to.
Be encouraged today!
Who loves YOU more than anybody else?
JESUS!