the mission of everyday…
I am just going to write here and not edit or over-think things. This space has always been where I shared my heart for the last seven years. I have never met a coma I haven’t abused in some horrific grammatical way, I make up words and sometimes I even curse. It’s me and it’s real and one day when we meat in person, you will have the same experience, maybe without the cursing.
We are now at the end of the second month of Miss Courtney’s “hospice” care. I don’t know what I expected but I will admit that I am surprised that my daughter is still with us. I have watched her struggle many a day to breathe through her seizures only to be floored watching her chuckle and laugh the very next day. This girl of mine has a very strong will to live and boy does it shine through.
I wonder at the end of everyday, as I lay her in her bed, “Will this be the night God brings her home? If not now then when?” I am impatient for the answer not just because I wish to see Courtney’s struggles and suffering end, but honestly because I am tired and worn through. I don’t see what else this child has to do here. Then again I am not God am I?
I heard a wonderful homily on Sunday from Fr. Hayes at my home parish. He read the prayer that Blessed John Henry Newman’s prayer he wrote on his (our) mission in life:
As I sat there and listened to these wise word words I was struck by their power. Not only in relation to my own mission, but in relation to my daughters. Courtney was chosen by God to do a certain work here on earth. She is a link in a chain, a bond between persons. She is not an afterthought, a mistake or a burden as the modern world wishes to label her.
She is uniquely and wonderfully made, with every single detail decided on by Our Lord. She obviously still has a job to do here since God has not called her home yet. I am being asked to show compassion and love beyond what I think I am capable of every single day.
Compassion means to “suffer along with”. It is the hardest thing to do, especially when you have no control or power to fix anything that may be happening to either yourself or one you hold dear to your heart. It’s exhausting both physically and emotionally but especially spiritually.
I mean how many prayers can one say? Don’t answer that and please don’t judge me for writing it. At my lowest points, I call out to God to carry me because I cannot take another freaking step. Then there are moments of hope given when I think she might actually turn it around and get well. Those usually only last about 24 hours before something horrid happens and I am placed back into my reality once more. That’s when I usually go curl up with my Courtney and take a nap. Some days I wake refreshed and others not, but each time I know I have done my best and the rest is up to God.
Tonight I am tired and worried and I have cried a few times throughout the day. I struggle with loneliness and emotional exhaustion and worry about our families future with Courtney her or without. Jerry is only covered for two more weeks before he will be laid off barring yet another miracle that I know God can provide. Man does he like to play things really close to the vest with those timelines.
Each day I hold my girl, I smell her hair, I put lotion on her tiny hands, I rub her feet, her tummy and her back so she will relax and not be in any discomfort. I sing to her, I read to her, I tell her about all the people waiting for her in heaven, I cry over her, I pray over her, I pray with her and then I do it all over again the next day. It’s honorable work but exhausting work.
I know that when God does finally call her home, my hands will be empty and my heart will be broken and I will think back to these days and berate myself for complaining, knowing that I will never get to do any of it again.
But tonight I am tired and bitchy and sleep deprived and very, very sad that this is how it’s all going to end. I am not even sure any of this even makes sense and I really don’t care right now. I just want it to be done.
I wish I could help you somehow Mary, but all I have are more prayers….and virtual hugs. (((((((((((((((((hugs)))))))))))))))))))
My dearest Mary, I am very sure that Mother Mary thought and felt all the same things as she stood by the foot of the Cross. You are an amazing woman on an amazing journey…. All the things you wrote are NORMAL and no one should ever fault you for the feelings, NOT even YOU!! Let them be and turn them all over to Him who is scripting this journey…. But I'm preaching to the choir. I know you've thought that too. Praying for you always.
Oh Mary, I am sorry this cross is getting so heavy. I wish we all could take it from you, for a little while. Be assured, your sweet Courtney has brought a deeper faith to people, I know this because of what she has done for my little family. She is such a beacon of pureness, beauty and peace in this world of bitterness and pain. And much of her beautiful witness is because of you, your journey is what is inspiring many to continue their walks of faith, during trials. More prayers being sent up and much love.
It is my great privilege to listen and to pray and to learn from your witness.
Praying for you. You put the skin on Christ for so so many. Thank you for sharing your journey.
The prayer is beautiful! I hadn't heard it before, thank you. Praying for peace and rest.
Thinking of you.
I don't know how to express the longing in my heart when I read your words. I wish you were my mother, my sister, my neighbor, my friend. Mary, you and Jerry and Jonathan and Courtney are suffering so beautifully. I mean…darnit, I can't find the words! Your witness is shiny. It's as though Christ is peeking through your actions, as though the Holy Spirit is reaching through you all to us, as though I can see the Father cradling you all. You are stressed and exhausted and pulled so far beyond your capacities, but you go on. Even through your tears, there are those sparks of faith, hope, and love. And your "complaints" are a lament, a psalm of crying out to the God you know is there.
I'm butchering it. Well, we're with you. We're praying, crying, and calling out for you all. And laughing with you, too, smiling at the pictures of Courtney, and thanking God for the quiet days.
I love Fr. Hayes. He is such a great addition to that parish. Mitzi said almost everything I'm not sure how to say. Because I do live in your area, my desire to reach out and help carry your cross is that much stronger than it would be otherwise. Your quiet strength is so inspiring. I know God gives it to you.
Oh, Mary…how I wish there were more I could do. This is going to sound silly, but our "laundry room" is our garage and it's 16 degrees this morning, and I hate doing laundry when it's this cold, so I offered it up for you. I know that's so little and dumb, but hopefully you know you are loved!
This is very beautifully written. God is just calling you to continue to love and to trust, moment by moment. His grace is always sufficient, and comes just as we need it. He knows all. It's okay to cry out to Him, just as even His own Son did. He loves you.
You are doing an amazing job. He knows just how heavy this cross is, and He knows just how heavy too heavy is. You remain in my prayers as you do His will so lovingly and beautifully. May He continue to give you patience, trust and strength for every moment of every day.
Mary,
You are such an example of faith in action. I pray the Holy Spirit sends your and you family peace and strength and that the Blessed Mother is close to you all. I was thinking you might enjoy listening to Relevant Radio as you spend your day at home caring for Miss Courtney. I am not sure if they broadcast in your area but they do have an app for your phone, kindle, PC, ect…the priests and guest speakers have so much wisdom to share and so much to uplift you. It has helped me a lot. I pray for you each day. Peace to you from one Mary to another!
Prayers for peace. I watched one of my children suffering as well. The suffering didn't last nearly as long (months…not years…but no one could figure out why she was in such horrible pain). And in the end all was well. But I TOTALLY understand your wanting it to end. It's hard to watch your child suffer, and especially in your case…you know the end…you just don't when and the suffering continues until she goes home to Jesus. PLUS it's hard to take care of others while being so emotionally exhausted and distraught. You are doing a great job. All you can do is keep plugging forward loving Courtney. I wish I could do more than pray. But I will continue to pray.
Praying for you. I was just around a couple young women who had moms very unlike you. Their moms just took and took, emotionally and financially, yet would not show up in times of need because of reasons like getting their hair done.
You are so different, showing up every day and minute, doing those little and big things. I know you would say, well, all moms do this. But they don't, even when their kids are healthy and easy to care for. But you are surrounding your daughter with love and snuggles and penguin PJs. That is your work of love.
It reminds me of that song "this woman's work"'by kate bush. Not sure if you remember that one…maybe you do because we are the same age.
Praying for you.
On second thought, do NOT listen to that songs. It's more a song to get out the emotions when a person is grieving something, not for when you are in the thick of the struggle.
You're in good company, Mary ("My God, My God, why have you forsaken me?"). So many before me said it eloquently. You are so generous with your time and love and self in sharing these raw moments with us. Be as gentle with yourself as you have been with Courtney. And if you're not able to be, let us. Prayers of peace for you all in these days. I feel honored to "know" you.