These past few days have been filled with many heart lessons, some easier than others. I have always strived to be honest in this space and I will admit to you, my sweet readers, that this transition of bringing Courtney home full-time has been one of the most difficult ones of my life.
To say that I was unprepared for the reality of my days would be a monumental understatement.
Yes, there is some “Mary drama” in that statement but really, I was flippin clueless for how this was going to go.
I had made a master schedule for Miss Courtney, a “to do” list for my daily chores to keep our home running smoothly and I made some basic changes to our living space to accommodate her wheelchair, lift, exercise mat and gait trainer.
This is challenging in an 1,000 sq ft Cape Cod, all while trying to keep it a home and not a handicapped equipment storage unit.
Now that we have lived with the “plan” for about a month, I came to the conclusion last week that it just wasn’t working. Courtney’s grand-mal seizures returned about two weeks ago and that has thrown a wrench into the master schedule I had set up for her therapy and activities as well as bringing with it a torrent of emotional baggage and questions of “Why now God?”
I was getting so frustrated with myself and the limitations of the situation that to be honest I was sinking into a bit of a depression. Courtney was struggling with her seizures, I was struggling with trying to get everything that needed to be accomplished done and all the while due to the very hot weather, we couldn’t go anywhere.
I was slowly unraveling.
You see I have an intense need to control things. Now…I am not a complete idiot. I know I can’t control Miss Courtney’s seizures or many of her health issues, but everything else in my life is fair game baby.
Is that laughter I hear…I thought so…yep…you got it…I realized that I am not in control of a darn thing…and this created a perfect storm in my heart and mind.
Everything in me wants to give my daughter the very best life possible. The very best life…and right now in my mind I was not providing that.
What does that mean for my control-freakish-must-do-everything-myself-because-no-one-can-love-her better-than-her-Mama-self?
Well…it sent me into a downward spiral filled with confusion, frustration, self-doubt and quite a bit of anger.
Anger at God.
Anger at myself for being so inadequate.
How the heck am I supposed to do ALL of this? That was the first question out of my mouth every single morning and by lunch time I was a complete puddle of uselessness.
The physical demands are exhausting, let alone the emotional ones. So I sat with my husband last week balling my eyes out wondering how the heck this was going to work.
How am I supposed to replace an entire school filled with very talented people who had limitless energy when it came to caring for my daughter every single day?
Can I just say…I love my husband. I love him with a deep abiding love. He is the calm in the center of my storm. He is a brilliant problem solver and most of all, knows his wife and her control-freakish perfectionism very, very well.
He came up with a brilliant observation.
“Ummm…you can’t. Your only one woman trying to replace a team of eight. That would be impossible to do.”
Did I mention how much I love him and admire the way he can see through the emotion of the situation and get right to the core of it? Yea…I did good saying “yes” to him 25 years ago.
Of course my reaction to said statement went a little like this:
“What do you mean I can’t do it? It’s not impossible. There has to be a plan or it won’t happen. I made a plan. There is a schedule (imagine said paper being not so gently tossed in his direction). I know what needs to happen and I still can’t get it all done. She is going to lose skills. The house will never get cleaned. I will never leave these four walls because I need to be here doing all of this. Impossible?? I don’t accept that. There has to be a way!”
Now imagine him standing there, eyes round as saucers, hands in pockets, just staring at his wife, the mother of his children having a complete and total breakdown, voice rising a decibel with every single word, as her hand gestures become bigger and more pronounced with each statement.
Oh yeah…this conversation was going to have a happy ending…NOT!
I proceeded to rant and rave for another ten minutes or so, tears and snot all over my face, pacing back and forth trying to get him to understand that I really could do everything, I just needed the right plan and schedule to implement.
He remained silent the entire time and just stared at me. I can only imagine what he was thinking…”If I don’t move she won’t see me. I may get out of this alive. Stay very still. There is a rabid animal in the kitchen…don’t move…just don’t move”
Yes, I was that crazy in the moment. Finally I was done, wrung out, emotionally depleted and out of kleenex and I plopped down in the chair and laid my head over my crossed arms.
I was defeated, done, completely overwhelmed feeling like an absolute failure.
“Wow,” he said quietly. “OK. This is what your going to do. Go take a shower, get yourself put together and we are going to go out. Just you and me. J-man can stay with Courtney. If you don’t get outside this house right now, you may turn into a serial killer right before my eyes.”
I hemmed and hawed. There was dinner to prepare and chores to do. He would hear none of it. Off we went for ice cream and a walk. By the time we returned home, I was calmer but my heart was broken into a million pieces.
My limitations and imperfections were hanging on me like an ill fitting dress.
Blah! I was sinking deeper.
The next day I moved through my chores at a snails pace. Nothing was going right. I was so discouraged and I couldn’t shake the feeling that my sweet daughter deserved better from me.
That evening I had to be at church for a Holy Hour for our Youth Ministry Core Team. We are preparing for the year ahead and over the past few weeks we have been studying the Gifts of the Holy Spirit and how God gives each of us a set of unique gifts to use in whatever life mission He leads us through. Each of us are called to use these gifts for God’s purposes.
Needless to say in that moment I felt a little betrayed by God for not telling me what my freaking gifts were so that I would know what to do.
During the Holy Hour, my friend Deb stood to give a witness at how the Holy Spirit had changed her life. She shared that all her life her one desire was to be a wife and mother. God had answered her prayer and “given her the desires of her heart and now she was overwhelmed with his generosity” having been blessed with five beautiful children. On a daily basis she was broken down and built back up by the Holy Spirit. She trusts her life and relies on HIM who loves her most to get her through. After all this is what she prayed for. This was the desire of her heart.
Let me just say as the Holy Hour went on…God brought me to the new understanding that He was only doing what I had asked Him to and now that I had that, all I could do was find fault with it.
How many times have I begged God to let us have more time with her? For twenty years that has been my daily prayer. PLEASE God…don’t take her yet…I am not ready to let her go…
God heard my prayer.
He chose not to take her. He chose to grant the desires of my heart and allow us more time with her.
And now for the past month I have done nothing but complain about how hard it is to care for her.
God has answered my prayer with such grace and mercy and I am throwing it back in his face like a big mud pie. What an ungrateful little harpie I am!
Needless to say, my heart was broken wide open once more and this time God is mending it with humility, strength and a little wisdom.
He has called me to a new level of trust and dependence on Him while I love and care for my Courtney for however long He alone allows.
What does that “look” like on a daily basis?
Well, I woke up this morning remembering the “List of Three”.
When my Dad was battling cancer he would make a list of three things he HAD to do every single day. This helped keep him focused on something other than the pain. Even though the man has been with Our Lord for 11 years, he is still teaching me life lessons. He is still speaking to my heart and showing me how to love my way through this life.
So I made a list of three things to do in between caring for my daughter. The master list has been tossed in the trash bin and I will take direction each day from Courtney as to what she is able to handle during her day.
I am not a team of eight. I am one mother who has occasional help. I cannot expect myself to do “everything”. How arrogant is that?
I do not want to get to that moment where God says it’s time for her to be with Him and have one single regret about how this time was spent. I don’t think I could live with that.
So, balance has returned to the force.
I feel such peace about the coming days.
A peace I have not felt in months.
God will steady my heart. He will walk me through the darker moments of discouragement that will come. I will offer the loneliness and isolation that will come back to him as gifts of thanksgiving for hearing my prayer and giving me the desire of my heart.
Of that I have never been more sure. I am overwhelmed with His generosity once more. He has chosen me for this mission and I will not seek perfection but will do my best today to love my family…it’s all that God expects from me.
This will not be easy…I have no doubt that in my weakness I will fail again…but with God…ALL things are possible…ALL things!
Thanks for being there with us. Thanks for your prayers, letters and emails of support.
We are blessed beyond measure…
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