This was the day our world turned upside down. The day my worst fears happened. The day a miracle happened. 

So many emotions come up when I think about this day. Feelings of regret, sorrow, joy, gratitude, anger, resentment, love, inadequacy, fear, anxiety, compassion, bitterness, frustration… you name it I am probably feeling it! But… God! God was there in every moment, in every detail, in every person that came into our lives that day. He was there. 

When I think of this day, I think about sitting behind the ambulance in my driveway not knowing what was happening with my baby but just praying for a miracle. I think about riding in the back of the sheriff’s car sending texts to my family to pray for Alek now. I think about standing in the ER while so many nurses and doctors and EMTs did everything the knew how to to save my baby and me just praying. I remember driving to Toledo with my dad and sending texts to anyone I could think of to pray for Alek.

Prayer is an amazing gift. We can share anything and everything with our Creator and know that He hears us. I have told him how angry I am that this happened to Alek, that he has this awful disease and as soon as I did a weight was lifted and I no longer felt so angry. I still hate that he has ALD and everything he continues to deal with because of this awful disease, but I no longer feel angry with God because I know God loves Alek more than I ever could. I also know that God has a plan for Alek, one that is bigger and better than I could ever make. 

I am still scared. Every year as this day approaches, fear takes over. I begin to have panic attacks and extreme anxiety, especially at night. I begin to think about losing Alek and that fear grips on so tight! But… God! I asked a friend to pray for my unbelief, because that’s what fear is. Lack of belief and trust in God and His love for us. Fear is satan sneaking in and trying to pull you away for the love of God. But this time it didn’t work, because prayer and God. 

Alek continues to have many struggles. Anything school related is challenging. He has been doing tutoring at school 2 days a week to try to prevent backwards sliding. He has also started horse therapy at Lily Creek Farms one day each week – this has been an answer to prayers. He has found something that brings him joy, a sense of accomplishment, and confidence. Seeing him on the horse and the smile of pure joy on his face is truly special. He is also doing counseling weekly. He has a love hate relationship with his counselor. She pushes him and this is hard for him. But we all need pushed sometimes. The behavior continues to be one of our biggest struggles at home. Alek also struggles with memory and word recall which causes frustration often and can lead to verbal and physical outbursts. 

We recently went to a neuropsychologist in Toledo in hopes of help determining if starting a medication to help with the behaviors would be in Alek’s best interest. Unfortunately, this doctor had not read any of Alek’s history, had no idea what ALD is and did not seem at all interested in learning more before beginning medications. He also said it was up to me which medication I wanted to try. This was NOT what we were hoping for. So… we will be traveling to Minnesota July 30 to see his team there. Alek will see the neurologist, neuropsychologist and his BMT doctor. He will also have bloodwork and an MRI. I am hopeful that we will have a clearer direction moving forward to support Alek as he continues to grow and develop. The anger and frustration that he has, this is not my Alek. He is a loving, funny, kind and helpful kid. I just want him to see that and to find his joy again! 

Please continue to lift Alek up in your prayers. Pray for a sense of calm and peace to wash over him. Pray for self-control. Pray for reversal of the disease in his brain (this is medically impossible, but nothing is impossible for God). Pray for wisdom and guidance for John and I. Pray for continued trust and hope in Jesus as we move forward and battle this disease every day. And please pray for our sweet friend Bayleigh and her momma Michelle. 

We will continue to put our trust in Him. I tell Alek often that it’s okay to be scared, but we also have to be brave and we can be brave because God is with us and He gives us the strength and courage we need each day. 

Joshua 1:9

Deuteronomy 31:6