It has been quite a day for my warrior girl.
It all began at 3 a.m. with the EMFIT monitor going off and this Mama running down the stairs to help her girl during a monster seizure that included toni-clonic jerks that I had trouble controlling which resulted in some pretty banged up knees this morning. She gagged, her lips turned blue and she screamed out in fear.
I think for me that is the hardest part. I can’t take it away. I can’t make it better. I can’t stop it. I just try to comfort her as best I can and we both try to survive it with as much grace as possible.
It’s a hell of a way to wake up let me tell you. We had just reached hour 52 of a seizure free life and whammo we are right back into it again. She had another one at 4:43 a.m and another at 5:32 a.m. She finally went to sleep and then didn’t have another one until about 3:30 this afternoon.
You would think this would get easier for me to deal with all the up and down and up and down again. Actually, no, it doesn’t. Not at all. Disappointment is a hard thing to control on a daily basis. It can zap the joy right out of my soul and steal the little moments of calm from my day. I don’t blame God. I don’t get angry, at least I haven’t in a very long time.
I understand, somewhere deep inside, that I cannot control this situation. I cannot make the seizures stop. I cannot take away Courtney’s fear or discomfort. Only God can and for now, He has chosen to allow things to unfold as they are. As I held her this morning, I whispered “How much more Lord? How much more do you need her to endure?”
What came to my mind in the next moment made me cry.
How much more can YOU endure Mary? Courtney is doing as I ask. She has given me everything. How much are YOU willing to give me?
How much am I willing to give? How much more do I have to give you Lord?
I give you my pride every time I come to this space and ask for financial help. It is humiliating and humbling in the same breath to tell people that you can’t do everything you need to do for your child.
It’s hard for this proud Irish Mama, to let go of control and admit to the world, openly and honestly, that I need help. I hate it but you have made it very clear though the prompting of the Holy Spirit that we are to do this. So I swallow my pride and I bow my head and hold on for dear life never knowing how things will end.
I give You my fear of rejection every time I go somewhere with Courtney. I think “What do they think of me and my girl? Will they accept us? If she gets loud will they ask us to leave? Will anyone in this store offer to help us? Will the lady sitting in the corner make that face the entire time we are here?
I give it over to you Lord, while my heart pounds so loud I think that everyone can hear it within a five mile radius and sweat begins to bead at the base of my neck. I pray that we can do what we need to do and not have a seizure or make a scene while we are there.
I give you my loneliness as I spend day after day alone with my daughter, taking care of her every need. I do this while most of my friends are enjoying second careers or hanging out at the gym.
I give you my dreams of one day watching my daughter walk down the aisle towards the man she loves or holding her hand while she delivers a child. I give it to you because if I hang on to it, it will swallow me whole taking me down the dark hole of depression and despair. I don’t want that. So, I give it to you Lord. I want to live each day with purpose and joy.
I take a deep breath and quiet myself listening for that still small voice…
Isn’t that what you’re doing? Living with joy and purpose? I have allowed things to happen because I see everything that you do not. I stand outside your fear and anxiety. Look at the Cross Mary. I did that for you, my beautiful daughter. I did that for Courtney. I love you both that much and more. You love me through loving Courtney and caring for her like my Blessed Mother cared for me. She did everything right and yet, she still had to watch them torture and kill me. It’s a mother’s worst fear, to loss her child, and you face it everyday.
You watch Courtney suffer and you hold and comfort her as my mother did me, especially at the end. Don’t worry about tomorrow. I will provide for you. Don’t worry about what others may think. That is their issue not yours. You do as I have asked you. Give me your life…ALL of it. Every worry, anxiety, joy and sorrow, dream and desire.
I give you everlasting life. You are loved my daughter. Your daughter is loved. So walk with me and you will never be alone.
Needless to say, this day has had a few bright moments and yes, more seizures but then this happened:
She smiles. She smiles and I cry as I hold her. That smile contains hope and love and light. That smile says “I am OK Mama. I am strong. I am loved. Even if today is the day I go home to Jesus, it is all OK.”
That smile says “I love you Mama. Thank you for loving me more.” It says “Everything will be as it is meant to be. Trust the One who loves me most.”
As I type this she is sitting next to me in her chair and she is smiling. Yes, I will still struggle with trying to do as I am asked. Yes, my daughter will still have seizures and I will still cry when her lips turn blue.
But in the end, I smile because she smiles. She smiles because she knows she is loved.
These last four months have been tough, both physically for Miss Courtney and financially for her parents. Heck the last twenty-one years have been tough for that matter. With increased insurance costs, food costs, co-pays and unexpected repairs needed on the van and the house, we have made the best choices we can on what to pay and when. We are still paying off medical debt incurred in the last four years as well. Each month there is a new challenge to meet and it has humbled me to the core to bring these needs before you.
We are currently raising $$ to pay for “Big Bertha’s” wheelchair lift. The van itself is repaired and running well, thanks to your generous contributions in December. But the lift is broken and it will be a minimum of $350 to repair. We have never had an issue with the lift before, but it is twelve years old now with constant use. If the mechanics get in there and find more than the switch burned out, that cost will rise.
We are currently appealing our insurance company’s recent denial of Courtney’s new AFO’s (Articulated Foot Orthotics). They actually told us that now that she was over twenty-one and had never “purposely walked” before, they didn’t see the need to replace her current AFO’s which are seven years old.
She cannot stand without her AFO’s because her serious lack of ankle strength. If we lose our second appeal, the total cost of her new AFO’s (which she needs to assist n her newfound walking skills) will be $2697.00.
These are the current needs Courtney has. She does receive SSI each month but that goes directly to her G-tube formula costs (approx. $425 per month) as well as her Doctors and therapy co-pays ($40 per visit). Then there are her vitamin supplements and RX co-pays for her seizure meds and SSI doesn’t cover at all. We are also a one income family, which is necessary for Miss Courtney’s care.
No, this is not an easy thing to do. No, it will never get easier. Yes, we are so incredibly grateful for all the help you have given in the past. No, we can never repay your kindness and generosity.
PLEASE know that you are prayed for each and every day. We have been able to keep Courtney home because of your charity. It is our hope that she remains here in our care until the end. But that’s up to God and not me.
So I offer up every anxiety and prideful thought in this moment and thank you from the bottom of my heart for your heroic gestures of kindness.