In my cup::
…Coffee. Strong, hot coffee with two raw sugars and real half and half. None of this “fat free” blech for me. I would be willing to give up meat for a week to make sure their were funds for “real” cream for my daily coffee. That’s how committed I am. It’s a good start to this Monday. We have much to accomplish this day. No time for my old butt to be dragging. Caffeine and prayer baby! Power up!
…Courtney’s room in the comfy chair. She is still sleeping and I just felt the need to come and sit with her. Once we get her up for the day, I have no doubt it will be non-stop until bedtime so I am relishing the quiet for these few moments.
Listening to the sounds of::
…silence…almost. We have Princess Lili the wonder dog visiting us for this week, while her family is enjoying some time at the beach. She barks at every squirrel or rabbit she sees. The birds are teasing her every time they land on the back deck. It’s kind of nice to have a puppy in the house again. We miss our Roxie. It’s been five years since she left us. Jerry would love another dog, but I am having a hard time taking care of all the two legged creatures in this house, so the four-legged one will have to wait.
The sun is::
…shining and it’s not too hot out yet. The dog has been taken out on a nice long walk, the laundry is hung on the line (I am being all housewifey Auntie Leila) and I actually know what’s for dinner tonight. Not a bad way to start the day.
Courtney is currently::
…sleeping. She is doing more than her fair share of that these days. I have no doubt it’s due to the weight loss and her seizure meds. Such a delicate balance has to be struck with her. It’s getting harder and harder to achieve it.
Thanks you for your beautiful words of encouragement this past weekend. I know you all love as much as we do and to hear the news that time may be running short for our girl is hard. Really hard. The funny thing is, nothing is changing in our day to day lives. We still need to do physical therapy, we still need the special adaptive equipment to make her life more functional let alone more comfortable.
We are still searching for the right answer to the hospital bed question. For now, we will use whatever $$$ is left after “Big Bertha” the Wheelchair van get repaired at the end of this week (thank you, thank you, thank you to all who gave for that repair) to purchase a down mattress topper that will go on the egg carton foam she already has to try and keep the pressure points on her hips and spine down to a minimum. We are also looking into purchasing some soft knit sheets, since the cotton ones we have now are very thin after much washing, drying, etc over the last three years. If you know of a good brand that is soft and washable, let me know.
Other than that, we are celebrating the heck out of her 22nd Birthday on August 18. More to come on that. Yes, YOU will play a part in it.
I wore a dress I have had for some time yesterday to Mass. You can see it here. I have also been wearing my gladiator sandals quite a bit. Makes me feel like a warrior. I need that these days.
What’s on my mind::
…I think I may frighten you away if I revealed everything rolling around in my head right now. Seriously, I will spare you that. What I will share is how God has really spoken to me in the last two days.
If you are Catholic, then you hopefully found yourself in Mass yesterday listening to the readings, psalm and Gospel that ALL had to do with god’s provision. Hello loaves and fishes. I almost laughed out loud by the end of the Gospel.
Message received Lord. Got it. You will provide what is needed when it is needed. Understood.
I know that some of you think that trying to purchase a $16,000 hospital bed for our girl is silly and possibly an irresponsible financial decision, given that we don’t know how long Miss Courtney has with us. I also understand that once you enter hospice, a bed is provided for you.
Here’s the thing, we may never enter hospice. Truly, we may not. We may be in the hospital with pneumonia or she may just have one big seizure and go home to God. She doesn’t have cancer, where you just watch the disease eat away. We don’t know how or when Our Father in heaven will call her home. We don’t. The Docs surmise one to three years. OK. We will take that under advisement and proceed living our lives.
We are in the process of writing a DNR that we have stopped and started on many, many times over the years. It’s time to complete it and put in place in the near future. I don’t want them cracking her ribs to resuscitate her. For what? She has fought so hard for so long, to do the job God asked of her. To show this world what the face of Christ looks like. To teach people from every walk of life, how to love without expecting anything in return, just like Jesus loves us. I want her to go when God says it’s time with as much dignity, grace and in as little pain as possible.
In the meantime we live. We love her and care for her with all we have. If that means trying to raise funds for the hospital bed to make my life as a caretaker easier, to make her world a little softer and more comfortable, than I will get down on my knees, ask the Good Lord for a little guidance and help, lay my request at His feet understanding if it be His will, He will provide it. Then I move on. He has this. If it is not to be, then He will show us another alternative. I have complete and total trust in that.
As for being irresponsible or as one person said “wasting money when the outcome is already decided”, I feel differently. We want the very best for our children no matter what their abilities. Many parents provide a college education or a new car for their kids. They pay for private school, dance lessons or a wedding. They sacrifice and work their butts of to give them a better life. I am doing no different for my Courtney and for our son for that matter.
There will be none of the above for Courtney. For her, the bed, the continual and constant care I and other family members provide, the prayers, the unconditional love, the 24 hour non-stop devotion she receives from me is ALL we can give. We will sacrifice what is needed for her, for however long the good Lord allows her to be with us.
If that is irresponsible or crazy, than call me BatShitBetty. You are allowed your opinion and I hold nothing against you for it. It changes nothing for me. I will do ANYTHING in my power to make my girls life better! End of story…
See…I told you you didn’t want to know what was rolling around on my head…
What I am praying for:
++ Amanda finished her chemo and is finally home. I pray her recovery form brain cancer continues and she will be back to her her old new self soon.
++ Elizabeth is on a new chemo plan. I pray for comfort, good pain management, and that she has time with her kids to make memories to sustain them.
++ for my husbands job and all government contractors. It’s a tough world these days and it looks like it’s going to get even more dicey. God is in control.
++ in thanksgiving for our daughter Courtney and our son Jonathan. Being their mother has changed me in a profound way. I pray that I will be able to love them as the Lord loves me, without conditions, just pure love.
++ on Wednesday, August 6, my beloved husband Jerry and I will celebrate 26 years of marriage together. It is the Feast of the Transfiguration. Believe me when I say, marriage has indeed transfigured us. I thank the Lord for this awesome man, who loves me without condition. I love him back in the same fashion. We are blessed indeed.
++ for those in the missionary field offering their lives in the service of Christ. Know that you are being lifted up each day, to give you strength of will and fortitude in purpose. So thankful for you gift of service.
++ for our engaged couple we are working with. May you know the Love of the Lord and bring Him to the center of your relationship relying on him fully and completely to lead the way of your new family.
++ for our church community who lifts our family in prayer everyday. I don’t know where we would be without them.
++ for ALL of you who read these pages, who pray, who help in practical ways…thank you so much. We are humbled and so very grateful for your love and sacrifice.
Adventuring in the kitchen::
I have gone back to a more simple meal plan these days. Cooking and baking what my guys love and a little less of the experimenting I had been doing. We are also digging through our deep freeze, using what we have on hand to cut that grocery bill and save a little cash.
I made this pork loin with roasted veggies last week. It’s quite simple. Toss some cut up potatoes, carrots and parsnips in some oil, salt, pepper, rosemary and thyme. Place them in and roasting pan. Rub the pork loin with the same spices and seasonings, lay it on top of the veggies. 25-35 minutes later (oven at 375 degrees) you have dinner. Add a green salad for the fresh component and you are done. Easy and tasty…my kind of meal these days.
Sewing with my Bernina::
This week will bring::
…my anniversary while Jerry is in conference, which means late nights and very early mornings. So we will celebrate quietly on Wednesday and then maybe do something together, just the two of us this weekend. We shall see.
“Big Bertha” will go in mid-week for her repairs and we will be mobile once more. Yay!
Miss Courtney has PT in Wednesday and will be heading into the Neurosurgeons office bright and early Monday morning. Time to get her VNS replacement surgery scheduled. Yippee!!
:: giving thanks for
#2156 ~ #2172
** daddy’s who love their daughters even at 3 a.m.
** son’s who take out the trash without being asked
** blog readers who reach out through email to spread the love and prayers.
** the Gospels that reveal the Lords plan for us
** parish priests who faithfully execute the sacraments with such love and dignity
** rocky road ice cream topped with extra nuts and chocolate chips
** friends who sit and listen with a box of kleenex at the ready
** my mother who has walked her own difficult journey and continues to teach me the meaning of love
** Lilo the do for making the mister smile and laugh
** the Knights and Dames of Malta, (The Federal Chapter) who provided Miss Courtney with a new fridge/freezer to hold all her special food.
** to Mom and Dad Lenaburg…you know for what…we love you both so very much
** soft pillow to lay my weary head on
** freezer meals prepared well in advance that are such a big help on my most stressful days.
** good books and strong coffee
** Gibbs at night with my guy
** lunch dates with my mother, just the two of us.
** YOU! Know you are prayed for every.single.day.
Have an awesome day Y’all.
What’s in your cup?
What’s sweetening your life?
Tell me all about it, I’d love to hear and join in the conversation.