My world has been changed so much in the last few years because of my oldest daughter’s special needs. At the end of 2017, she was diagnosed with a rare genetic mutation in Gene USP9X, which was found through “whole exome sequencing,” a very extensive genetic testing. It’s so new that it doesn’t have a name and is only known by the gene. We now know that this is the explanation for the myriad of health concerns and developmental delays that she has experienced since birth.

Having watched our daughter add something new to the list of health and development concerns every few months since she was born has been difficult. Yet watching her grow and overcome so much has been liberating, life–changing and breath–taking. She is the bravest and most loving person I know, and the best teacher God could have sent me to daily learn how to trust Him and be thankful for life. She knows fullness of life that some only dream about. I think that where some see “a lack” when they look at her, and even where I have seen a lack in her life, the Lord is constantly saying to me through her, “FULL! WHOLE!”

It was soon after she turned 5 that she was able to sing. I had never heard anything more beautiful in my life. It was such a confirmation of joy in the midst of her journey.

We named her Journey Beth with the hope and prayer that her life would be dedicated to God, that she would walk this journey of life with Jesus. It’s been in the highs and lows that we have seen Him walk with her and with us. Even in all this we praise God because she already believes that Jesus loves her, died for her and now lives in her.

When I struggle with her health now, it’s not because of her “lack;” it’s my own lack that I see so clearly. I’ve learned in life that coming face to face with our own weaknesses and our own short–comings can drop us flat on our face. It’s what happens afterward that matters. We can stay down, or we can let God pick us up, hold us up and walk with us through it all.

Falling on my face happens often; some days I’ve chosen to stay there, but not today.  I pray for God’s strength for today just as I’ll need to pray for it tomorrow and not depend on what happened today. His grace is sufficient for my weaknesses and I have to keep going back to Him and staying with Him to experience it each day.