Just a little warning…with all we are facing this space has been a safety zone for me to work out what weighs down my heart. I promise that one day soon, there will be dancing and singing again. I promise that there will be yummy recipes again. But for now, I need to unburden my heart. Thank you for your patience and your prayers.
It’s only been two weeks since our little world began to tilt off course.
It feels like ten years.
I look at my daughter today and I see shades of her former feisty self in between long naps and way too much quiet chair time. I am used to the humming and occasional Chewbacca yelling, the hand washing and rocking back and forth. There is comfort in what is familiar.
I told my mother this morning that I feel at odds these days. I don’t know what to do.
I am a doer you see. I don’t sit. I fight. I rally. I act.
For the first time in a long time, I find myself helpless to do anything to help my daughter. I am a general who has been asked to step aside and allow the troops of prayer warriors and others in my daily life, to do the “doing” that needs done. I have been asked by God to sit and be in the presence of Him and my daughter. To do nothing but love her and soak in the time I have left to hold her in my arms.
This love story of ours, between me and God and Courtney, has had many ups and downs but through it all, God has been faithful and in every situation and his generosity has known no bounds. To think that we have had 22 years together with our daughter, to love her and know her true self, the incredible person God created for us to love and care for, has been a gift. A priceless gift.
Courtney has lost six pounds in one week. She is now 82.8 pounds. If this continues, her time here with us will be much shorter than we hoped. We are following every direction given by her physicians. It is confounding and confusing as to the “why and how” this is happening. I spend the majority of my days holding her while she sleeps and snuggling with her while she’s awake. It is a honor and privilege to do so.
It is hard for me to pray right now. Most of my prayers are more conversations with God about Courtney, Jerry, Jonathan and myself. I ask questions and sit in silence hoping to hear an answer. All I hear right now is “Be still and know that I am God“.
“Be still and know that I am God” translates into “Be still and know that I have Courtney in the palm of my hand. Be still and know that I am the only one who knows the time and place that she will come home, so stop worrying about it. Be still and know that you have done everything I have asked of you and more. Now I need you to allow others to love you and your family. I need you to see my face in every person bringing dinner to you, every surprise that appears on your porch, every donation made to pay for the medical bills. I need you to see that I am loving you and Courtney through all of this. This is not the end of the story. It’s just the next chapter in the life of a saint. Courtney will come to me when I ask and not before. Be still and know that I love you. I love Courtney. I love Jerry. I love Jonathan. This is not a punishment. This is just another opportunity to love me above ALL else. To let go of Courtney is the hardest thing I have ever asked you to do. Trust me my daughter. Trust me in the plan I have for her and for you. Be still and know that I am God.
This is what I hear when I close my eyes and the tears come as I hold my girl. I do trust Him with everything I have. I trust Him in this plan, the one I cannot see, the one I don’t understand. I trust Him to know when to call Courtney home. I trust Him to provide for our family. I trust Him to lead us and show us the way through the coming grief and sorrow.
I have loved this child from the moment I knew of her existence. I have loved her through every medical test, every seizure and every crisis. I have loved this child through every lost tooth, reflux incident and physical therapy session. I have loved her in sickness and in health. I have loved her through ALL of it and I am privileged to have done so. To know and love this child, her smile, her feisty temperament, her incredible strength and will, is to love her Creator and the gift he gave to us named Courtney.
My life changed the night I became a mother to a son. I loved him without reserve and I thought I knew what love was, Then I got to meet his sister. I had to re-learn the meaning of that word and embrace the idea of sacrificial love. I had to fight through all the doubt that I could not possibly be strong enough to mother her and care for her. I had to learn to trust in the plan God had set out for her and for our family.
It has taken me twenty-two years to come to this place of peace. It is not an easy thing. As a matter of fact it is a daily battle to try and stay in a place of trust with God. Not to scream and yell at the injustice of it all. It is hard to be still. But…I know it is where I am called to be in this moment. I will do my very best to stay in this place as long as the Lord needs me here.
Many years ago Jerry and I (with the help of our wonderful friend, Deacon Marques) chose a verse for our daughter that expressed how we feel about her. I see it now and know that we chose well.
“For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope.” Jeremiah 29:11
God has generously given our daughter future with hope. This has not changed, even as we approach the day when we will hand her back to Our Lord.
There is hope my friends. Always hope. For God is the Alpha and the Omega, the beginning and the end. The Lord giveth and the Lord taketh away. Blessed be the name of the Lord.
If you are in Northern Virginia tomorrow, Sept. 12, please feel free to join us for Adoration at St. Mary of Sorrows Parish from 9-10 p.m. Courtney will be with us. We will be praying that the Lord’s will be done, always leaving room for a miracle.
As for your prayers, your sweet messages and your generous practical support, thank you for loving us through this. Thank you so very much.