This past week has had it's ups and downs. Miss Courtney is holding her own, handling the seizures as best she can. In between she is beginning to hum and sing again. She has her appetite back and is finally eating by mouth again. Her sleep is still being interrupted by seizures which makes for some very long nights.
Last night was one of those. She was having a hard time calming down in between seizures so by midnight I just decided it was easier to crawl into bed with her and hold her. So I hauled my not so petite self into the twin hospital bed and snuggled with my girl. She was shaking and in shock from her last seizure, so the first order was to get her warm and make sure she was breathing nice and easy.
So I just started to say the rosary softly as I rubbed her back and arms. She immediately began to calm down. It always happens that way. Our Lady's prayers spoken softly into her ear always have always been like a balm for my Courtney. So pray is what we did. Then another seizure would come and we would do it all over again.
This went on most of the night until around 3:30 - 4:00 a.m. this morning. Then she finally found some peace and slept. As for me, I took a short nap and then a hot shower and coffee made the rest of the morning passable. We had to miss PT again this morning but our therapist is very understanding when Courtney is going through these clusters of breakthrough seizures.
Even thought I have been struggling these past few weeks with the emotional toll of this current setback, I realized something in the wee hours of this morning.
I am meant to be here.
This IS what I signed up for 25 years ago when I stood with my beloved and gave him my heart in front of God and all those we love.
This is in good times and bad, in sickness and in health, accepting children from God to love them and care for them. This is the hard eucharisteo that Ann Voskamp writes so lyrically about. That place where God asks you to lean in and just trust that He has a plan. Maybe not one that we can understand but one that in the end will be in our best interest.
He is asking me in those dark hours of twilight, when I am exhausted and can't think straight, when I feel completely and utterly alone in this battle over a heart full of fear to trust Him with all of it. To love Him through all of it. To be willing to receive His grace. I cannot do any of this without Him. He is the only person that can truly sustain Jerry and I as we face whatever the future holds.
After all, He carries my daughter through every seizure and is with her every step of the way. he asked something very different of her than He has asked of me. The suffering she undergoes for His glory is more in a day than all my years of life wrapped up in one.
This may not look or sound or feel anything like what I thought mothering and caregiving would be like, but it is what I was meant to do. Caring for this sweet girl and all the drama, joy, wonder worry and at times downright frightening moments that come with her and her condition.
I felt such peace this morning. There really is a tremendous amount of joy here in this home. It is a happy place 95% of the time. I need to keep focused on the love that exists here in this place. I am not perfect by a long shot. I whine and complain WAY too much over the stupidest little things. My humanity is all too front and center and I have a lot of work to do to stay on a path always walking toward God, toward that peace of mind and heart leaning on Him for everything. Everyday I am challenged in the little annoyances that can totally ruin my day if I allow the pettiness o f the situation to seep into my heart.
One amazing thing that I take for granted sometimes are you wonderful people. You take the time to stop by and read these words and offer prayers and sacrifices for my daughters well being. You send me encouraging emails and sometimes even wonderful snail mail surprises. You send little gift for my girl and her Mama and when we hit the finacial wall over some issue with her care, you show up in a big way. It's one miracle after another that YOU are a part of. Not only a part of but by God's grace YOU are the miracle. We could not have fixed the van, paid overdue hospital and therapy bills without YOU!
God sends love through each of you and today we are going to celebrate that love. Here are this weeks FIVE FAVORITES:
Yesterday we had THREE visitors. I know. It was an amazingly wonderful day. First Miss Sharon came by early and shared a hot cup of coffee and a morning pastry. We chatted about my emotional state (which was greatly improved after she left), what was happening in the world, our plans for Christmas dinner, and of course what we were both writing. Rather what she was writing since I have set aside the memoir for the moment.
Then Miss Kathy came and shared a lovely light lunch I made for us. She is a wonderful conversationalist and always has the best stories to share. We talk writing, mothering, great reads, marriage and family, religion and occasionally polotics. Being on different sides of the political aisle on many things, these conversations are always respectful and honest. She is a gift to me and I so enjoy our time together.
Then Miss Deb came by for a quick twenty minute visit in the afternoon while running errands. Miss Deb is a NICU nurse at a local hospital so Miss Courtney's seizures don't frighten her which is a good thing since Courtney decided to show off her skilz while Miss Deb was here. A nice four minute grand-mal seizure right before she left.
To visit the sick is a corporal work of mercy and even though I am not the one sick, I am isolated because of my daughters needs. These visits are such a gift to me. So if you live close by and you're reading these words, don't be afraid to stop in and say hi. Five minutes, fifty minutes, lunch or coffee or a quick hug hello. You are NOT intruding. You are a gift so come on by. The door is open and 95% of the time we are here.
I LOVE this tradition. You leave a little gift anonymously for someone you know or not. I have done it many times in the past. It gives me such joy, to know you made someone else's day and they never know who it was that provided that moment. So.Much.Fun.
Yesterday it happened to us. Someone left a little package on the front porch and I will admit I squealed with joy when I saw it. Have I ever mentioned how much I LOVE surprises. I truly do. Whomever this individual/family is, if by chance you're reading this, know that you provided some serious joy in our house yesterday. SERIOUS JOY!! I did not recognize the handwriting so you secret is safe. Thank you from the bottom of my heart. Know that we will pay it forward. I promise.
Today I got a box from my friend Miss Sharon who lives a state away. I was her matron-of-honor, she was one of my bridemaids. I am a godmother to one of her twin sons, she is Court's godmother. Even though we have not been able to spend as much time together as we would have liked over the years, every time we get to see each other, it's like we are back in high school/collage again as much talking and laughing that we do.
She saw my post from the other day lamenting the lack of baked good in my home and whammo two days later, there is a box of baked good on my porch thanks to the US Postal Service. WHAT!!! Oh my gosh there are many varieties and every single one of them is delish. My husband actually did a happy dance when he got home. LOL! He is one happy man.
Thanks "Auntie" Sharon. You are a rock star (and one heck of a baker)!
Coffee...lot's of coffee...
I love Christmas Carols and the like. I remember growing up we would listen to the Andy Williams Christmas Album on the old stereo, crackling and all. It is still my favorite one to this day. That and anything that Big Crosby sings.
Labels: Five Favorites, We Can Do This!!