We went to the Blind Children's Learning Center today and had so much fun. It was wonderful being with the kids, their parents, and the teachers, enjoying the beautiful weather. Marcus ate 2 cookies by himself for the first time, and was very happy about that. Audrey got to decorate cookies, paint an egg, and help Marcus search for beeping Easter eggs which could then be traded in for a huge bag of candy, a stuffed animal, and a picture with the scary big bunny. I was so happy to be there with them and the other precious kids, and so thankful for the people at the center who do such special things like this for the kids and families. But at the same time, my heart was so broken for many of the kids there with multiple disabilities, and so burdened for the parents of these children. The BCLC is a wonderful place for us to be at, yet it's a very difficult place to be...especially if you are not used to being around kids with these kinds of disabilities.
My heart is also increasingly burdened for my fellow Joubert Syndrome family members. We are all facing similar issues with our kids, yet the spectrum is very wide and every child is so unique. Some families are struggling with certain things and others are struggling with different ones. They are all very difficult issues and each time I read about them, my heart breaks a little more because I understand the emotional toll it takes for them to care for their little gifts from the Lord.
And then I look at my sweet Marcus and words can't express all that is in my heart. It's both joy and heartache at the same time. I grapple with fear of the unknown and the irrepressible pain in my heart that longs for him to have a blessed life here on earth despite all the hurdles and potential threats. Yet at the same time, I am so thankful for everything that Marcus is and so honored that Mike and I get to be his parents. He is a gift that we are SO undeserving of.
Caring for a child with disabilities can be so consuming. Physically, emotionally, spiritually...it can be very exhausting. I think one of the toughest parts is maintaining joy when faced with such heartache. This is the toughest thing that I think God has put on our plate: to trust Him and to have joy in Him while caring for Marcus. And yet, I don't think He's given us Marcus because He knew that Mike and I could handle it and that we could rise above these trials with inpenetrable faith. I think He has allowed this because He knew how weaksauce we really are and that it's impossible for us to have hope and joy in Him apart from His grace in our lives. There are some who really are strong and who really are amazingly able to get through trials like these on their own merit. However, I don't think that's the case with us.
I remember thinking to myself after Marcus was diagnosed with RP a few months ago: "How will I get through life? How will I get out of bed every morning? How will I keep from crying in front of the kids everyday? This is impossible...I can't do this." And by God's grace, this is when He used key people in our life to remind us of the Gospel. And it was the sweetest thing we ever heard. I wish I could share everything, but here are a few ways the Gospel has secured our hearts in Him in our trials...
When we're overcome by heartache for our son, God reminds us that He knows our pain. He saw His own Son endure the most suffering any man endured. In fact, He inflicted His own Beloved with sorrow, pain, dejection, and death so that we could be redeemed. When I think that I won't be able to get out of bed, He reminds me that if He gave me His Son, He will also give me everything else...including joy and faith in Him. When I wonder "why is this happening?", He reminds me that although I may not know the big picture, He loves me with a love that can never be separated from me. And on top of that, He loves Marcus and our whole family so much more than I can imagine. Seeing our trials in light of the cross, where my Savior died for me, reminds me that He loves me and that in Him, we have everything. I can take all my burdens and sorrows to Him, because He loves me and cares for me.
So, I'm beginning to understand that it's not really up to me to be strong, muster up courage and joy on my own, and be Super Christian Mom. For me, it's about coming to my loving Father, totally weak, sad, burdened, in despair, and asking Him to do it all for me because I surely can't do it on my own.
I can't wait for Pastor James to preach on this passage this Sunday:
Gal 2:20 "I have been crucified with Christ; it is NO LONGER I WHO LIVE, but Christ lives in me; and the life which I now live in the flesh I live by faith in the Son of God, who LOVED ME and GAVE HIMSELF FOR ME."
For me, it's a relief to read that I no longer live, but Christ lives in me. It's a relief because I know I can't live this life the way I should. I'm too weak and wicked to do it right. It's a relief that Jesus lives in me...the perfect one, who loved me and gave Himself for me.
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