Friday, September 19, 2014

love bombs...

Jerry looks so confused. He told me yesterday that in these hard economic
times people are struggling to take care of their own. The would not be helping us.
 I told him to trust in God's plan for our family. Then this happened.
Jerry - 0, God - 1,000,000

Well, well, well...after yesterday's post all about our plan, you all took things into your own hands. 

You guys, you guys, you guys...

I am not even sure what to say. Today we were love bombed. I mean it was HUGE! UPS man using a dolly HUGE. When I made the Amazon two days ago I had no idea what would happen. I literally went through, chose what was needed, wanted and dreamed of and left the rest in God's hands. I KNEW whatever happened, HE would provide for us. 

Oh.My.Gracious. 

Did HE ever provide. His Holy Spirit moved though the interwebs and touched so many of you. I stand in AWE of Our Lord in this moment. 

Courtney now has all she needs (and more) to face the next few weeks/months/year on this earth. There are a few more cases of baby food left to purchase for her g-tube formula, but other than that, it's ALL done. I just have no words. 

Once again on the advice of several readers/in real life friends, Jerry and I went through some of the frozen food that is readily available on Amazon and chose a few things. 

We will start having homemade meals delivered from local friends and family as we get closer to the finish line, but for now with all that is required to care for Courtney daily, it is easier to just have something in the freezer to make the family each night. 

before the seizures started this afternoon...

Dinner is proving a struggle for me. After dealing with her daily care and then paperwork and housework, I am just a wee bit exhausted and my brain is way fuzzy. So having something ready in the house, not requiring anything but an oven or microwave is what's best in this moment. 

By having it delivered via Amazon or what have you, I am not required to grocery shop at the moment which is a good thing. Today Miss Courtney started off well, was smiling and humming, but then just spent the last two hours dealing with cluster seizures to the point that we had to administer her rescue meds. She is finally sleeping and I think the seizures have stopped for now. 

Only time will tell. 

I am ready for a nap. Watching your daughter fight for breath during a seizure you can't stop is exhausting, both physically and emotionally. This is how it's going to be. Happy clappy living one minute then drama the next. So if you are moved to assist in "making a meal" via Amazon for us the items have been placed on the list and my two hungry men thank you. 

The PayPal button and the GoFundMe are still open as well to help defray the cost of her medical care as well as address the extensive medical debt we have. 

As for what has been delivered today and what will be coming, know that we are so grateful and humbled to be loved so well. I won't be able to send individual thank you notes for these since no ones addresses were on the package, but be assured of my daily prayers of thanksgiving for you and those you hold dear.  

I promise to take lots of photos of Miss Court and her new wardrobe. 

Blessings and Grace from our home to yours, 


** we humbly thank you from the bottom of our hearts 
for any help with Courtney's extensive medical bills**

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Thursday, September 18, 2014

peace and the promise of a happy ending...

This gift arrived today from the HonakerHomeMaker...beautiful
Today was the day. 

After two weeks of research which included hours of reading, speaking with hospice care workers, doctors, therapists, priests and family members, we set a meeting with Courtney's neurologist who has been the lead in this process, since all of her issues stem from her seizures which have been present since she was five weeks old. I had done my job and brought all my research and ideas to this meeting. My Mom came as well. Jerry was stuck in a meeting at the last minute and since his job has only been extended for two weeks, we both felt he needed to not make waves today. 

So Mama Bear to rescue. 

buddies...Miss C and Doc S...

We have been with Doctor S for seven years now. He has been a godsend in this process.  He knows Miss Courtney better than any other health care professional and he has had extensive experience dealing with the disabled population and all that comes with them, including hospice and palliative care.  

What was so surprising to me in my research was exactly what hospice provides. Most of the services are geared toward patients that are dealing with a fatal illness in the last few months of life. Their families are unprepared to handle all that comes with that care. They are not familiar with what needs to be done so they need assistance. I totally get that. 

We are not that family. 

I have been caring for Courtney's daily needs for twenty-two years. We have respite care workers and personal care helpers in place. Both Jerry and I have spiritual directors and we have sought counseling when needed from time to time. Our son has done so as well. I know Courtney's daily care needs. I know when she is hurting or hungry, when she doesn't feel well or if she is having a happy day. I know what to feed her as well as what to dress her in so she doesn't get uncomfortable. 

I know her med schedule, how to take her blood pressure and where that pressure should be to be considered "normal". I know how to take her pulse. I know how to give her a therapeutic massage and what her favorite books and music are. I know many of her PT exercises and what her lungs sound like when she is in trouble. I am not a nurse but I have been chief caregiver and bottle washer for twenty-two years. 

This is what compassionate health care looks like -
recognizing the dignity of the human person. 

We are a team Miss Courtney and I, and a very good one at that. 

Given ALL of the above, as well as insurance considerations, family and religious preferences, we decided that Miss Courtney will remain at home with us. She will be cared for as she has been, with respect, lots of love and family all around her. She has earned a loving and peaceful death. She will go home to God here in the arms of her Mama and Daddy. Doctor S was so very kind when he assured us this afternoon that we have done EVERYTHING WE CAN. We have tried every therapy, every medication, every experiment available. Miss Courtney's body is tired and giving out. It's time to love our girl home to God. 

He assured us that her care at home has been beyond excellent and he had faith in Jerry and I to continue that very high level of care to the end. She would get no better from someone else. He had tears in his eyes when he said that he would be honored to walk this final journey with us, giving us any type of help and medical back-up that we needed. He will be the head of our palliative care team at GUH and we will be the foot soldiers. 

He sat with us for quite some time today. He went through everything, what we needed to change to help her as she becomes bedridden, what death will possibly look like for her whether by seizure or by coma, what we do at the end and what each of our roles will be in the process. Being a man of deep faith he also went through what we needed to put in place as far as funeral arrangements and grief counseling.

We hugged, he kissed and hugged our Courtney and even hugged Grandma. It was a wonderful, grace filled productive meeting and when we left I had total peace. I mean TOTAL peace that we were doing what is right for our family. God was ever present and I am so grateful for it.

 We will need to add a different memory foam mattress topper to her bed (which we added to Courtney's Amazon wish list) to help her bony little bum and back and my Mom and I will change her room around a bit to help with her daily care as well. We will also be tweaking her med schedule and feeding schedule to allow for maximum weight gain/control and seizure control. 

We have selected her casket and will pay for it when the time comes since there is no cash on hand to do so now. We know her Mass will be at St Mary of Sorrows, where we have worshiped and our daughter has been loved for sixteen years. We will be sitting down with our Deacon and a representative from the church to go over her funeral Mass details in the coming weeks so that when the emotions overwhelm us, we have a plan in place. Jerry really wants bagpipes for her when she leaves the church so we will have to figure that out as well. 

Team Courtney
That's where we are tonight. I have to admit I am a bit surprised but we are all OK. We really are. Jerry and I have dedicated most of the last twenty-two years to caring for our daughter and as her needs changed so did our care plan. This is no different. We have Jonathan here to be a part of this journey which is so important.  

We love our girl with all we have. She is a fighter and will fight until her last breath,I have no doubt about that. It's genetically encoded in all Green's and Lenaburg's. We are a fighting people. Wether she dies in three months, six months or nine, God is in control. We will leave room for a miracle, always.  

We will continue to care for her and love her as we have taking into account here current needs. As they change, we will adjust. God will decide when our daughter goes home to Him. 

Until then love always wins

We ask for you continued prayer support. These prayers sustain us daily. They get us through the long nights and hard moments when our girl fights for breath during a seizure or fights her way through an infection or virus.  

Know that we appreciate everything that God is doing for us right now, most especially moving peoples hearts to help us in practical ways. We have been love bombed by our mailman and the UPS guy. You all are so very kind. 

So.Very.Kind.

If you feel called to donate to  the PayPal or the GoFundMe accounts to assist in paying off her medical debt, we thank you from the bottom of our hearts. If you blog or tweet or gram and wish to share our daughters story to assist in the fundraising, you have our permission to do so. Whatever you are moved to do, we appreciate. We truly do. 

I have been asked repeatedly what can be done to ease MY daily burden. The only thing I can come up with besides dark chocolate and coffee, is help with dinner time. If you feel moved to help with meals but live too far away to do so, we had friends point out that you can order frozen food from QVC or another vendor to send through the mail. If you live locally, we will be setting up a schedule in the near future to assist. I will let you know when.  

If there is something else you feel moved to do, then please just email me at mary_romance@cox.net 

We know we are not alone in this journey. Our daughter has touched many, many hearts over the years and her work here is not yet done. We trust completely in God's plan for our daughter and our family. We know his generosity can never be outdone. Never. 

We will walk this path before us praying daily for the grace and mercy to face what will come. It will come as we need it. God promised us this from the beginning. Courtney Elizabeth is only ours for a little while. She belongs to God for an eternity. He has not finished writing her story. He has one hell of a happy ending in store for her. I just know it.  

Blessings my friends and thank you for your love, 


** we humbly thank you from the bottom of our hearts 
for any help with Courtney's extensive medical bills**

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Wednesday, September 17, 2014

warrior princess...

 

My girl had a great morning this monring. We had a visit from our friend Mary Alice (who also brought dinner, which smells awesome in the oven at this moment in time) and we also got to wear a new shirt/yoga pants combo I went and got last night at Sears. Land's End was having a sale so I looked for the largest kids clothes and bought these two pieces for under $30. I think they look cute and not too juvenile. What say you?

Thank you, thank you, thank you for your honest and forthright comments to yesterdays blog post. I was so pleasantly surprised by your willingness to listen to my rants and whines. LOL! I will continue to write through this process and we carry our girl home.

One thing that popped up in the comments was the suggestion to make an Amazon wish list for Courtney's clothing and other needs. My email was flooded with the same idea. I feel like a moron for not doing this sooner. So make a list I did. I included not only clothing but some flannel sheets for her bed, personal care items, items for her g-tube formula and even the detergent I use for her clothing. That should cover what needs to be done for her. I will post the link with each blog post. You all are so generous and kind with your help for our girl. It just takes my breath away.

In other GOOD news, Jerry's company extended him for another TWO WEEKS!! This pushes his lay-off date to OCTOBER 3, 2015. This means we will be covered by insurance until November 3, 2015 if he gets laid off. Praise God for this gift!! He is good, so very good!!

They really like Jerry at NG and respect his work ethic there, so hopefully this will give him and the HR dept. a little more time to find a job within the company to re-deploy him too. He came though the door this afternoon with a SMILE on his face. Oh how I missed that smile. He is still waiting to hear about a few other positions outside the company as well. I cannot ask more than that. Saint Joseph has got this one. I just know it, no matter the outcome.

What a beautiful day it has been. The weather is crisp and fille dwith possibility of fall. We had a beautiful visit with an old friend from homeschooling days. She made an awesome dinner for us with dessert!! Miss Courtney has a few new pieces of comfy clothing to wear and even fighting through seizures, she is still smiling. Oh, I almost forgot. She has poodled every day this week on her OWN without and help!! (That's #2 for those of you wondering). THAT is a freaking miracle as well.

I even had a piece of dark chocolate today. Awesomesauce my friends!! Life is just filled with an abundant number of blessings!!

God is good ALL the time!! Thanks for all the love!!



** we humbly thank you from the bottom of our hearts 
for any help with Courtney's extensive medical bills**

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Tuesday, September 16, 2014

.5 pounds...


So my sweet girl was weighed this morning and she gained .5 pounds. YES!!

I know. Silly to be so excited but you know, I will take it my friends. I will place that .5 pounds in the win column for the day.

That's about the only thing in the win column today. I spent the morning on the phone trying to get several answers in regards to hospice, hospital bills and a med change. That's three different calls and three very frustrating situations at that. Oh SweetMolly, I woke up on the wrong side of the bed to start with and then to have to go through all that only to be told they would a. call me back, b. call me back and c. had no idea how to help me but call back tomorrow and talk with the head manager dude.

Aaaaahhhhhhh!! Calgon take me away...far, far, far away. Save me from these mo-rons!

So I will take those .5 pounds and run with it.

Joining the nightmare paperwork ordeal in the total life sucking loser column is the fact that since Miss Courtney has lost so much weight, none of her clothes (save her birthday PJ's) fit her.

Aeeeecheewahwah...what next universe?? What next?

So my friends, since I have always been very honest here in this space, I am going to share a small piece of my most recent confused and frustrated mental conversation with you. It sounded a little like this:

I have tried on half her closet and everything looks like it was made for her gigantor sister. What the heck do I do now? She has been given six to nine months here on this earth. Do I buy her new clothing? Do I make her new clothing? Do I go to the thrift store? How many outfits do I get? How long does she have here with us? She won't wear jeans anymore. She fusses at "stiff" fabrics. So I need soft and warm things since we are heading into Fall and Winter? We have no savings to do this with. Jerry will be laid off on Friday. What the heck am I supposed to do? I seriously do not need this in my world right now. She wears a child size 14-16 or a woman's petite small. Aaaaaahhhhh! She can't live in three pairs of PJ's for the next nine months!! 

Now, before you judge me, please know that I know this whole mental conversation is silly and stupid. I mean they are just clothes and I have enough fabric to open up my own JoAnn store, so I will get to work on a few things to make it work. That is after I get some sleep.


Me + fabric + scissors + no sleep = disaster. So I will get to work in the coming week.

I don't know how to do this whole hospice, watch your daughter make her final journey home thing. I really don't. I mean who looses sleep over the fact that they need to get a smaller size in clothing?? This is NOT something to lose sleep over people. Ugh!!

I need a book, a manual to make my way through this. I had to go buy a mortar and pestle today, so I could crush her seizure meds to give them to her through her g-tube. Why not get the meds formulated for her g-tube? Well we already paid for the pills weeks ago before she could no longer take her meds or anything else by mouth. You see my quandary? Either buy a $35 piece of kitchen equipment or spend hundreds in replacing all her seizure meds. So grind up the meds we do my friend and keep moving forward.

I also wonder how much blogging I should be doing. I mean all I do is bitch, whine, moan and complain about hard things are or I cry through my words about how much I love Courtney and don't want anything to change.

Who wants to read that e.v.e.r.y.d.a.y?

Not me. You?

What say you the most awesome, sweet, badass blog readers on the planet?? You cool with it or no mas...comment and I will take an unofficial poll.

That's all I got.

Complain, whine, moan and then have irrational thoughts about a shopping spree that cannot be. Oh yeah baby...this life...it be 'da bomb!

Until next time...

** we humbly thank you from the bottom of our hearts 
for any help with Courtney's extensive medical bills**

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Monday, September 15, 2014

coffee for your heart #24...

Happy Monday Y'all. 

I pray this little video finds you and your loved ones well and enjoying the beginning of some fabulously awesome Fall weather. Things here are quiet today and that is a gift unto itself. Miss Courtney continues to do well for the time being even as her weight drops. SO we walk this one day at a time, one health crisis at a time and LOVE all the time. 

Blessings, 



Coffee for Your Heart #24 from Mary Lenaburg on Vimeo.


**please consider helping with Courtney's extensive medical bills**
we humbly thank you from the bottom of our hearts

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Sunday, September 14, 2014

what i wore ~ vol. 64...


Ahhhh the Lord's Day is upon us once more and today it feels like Fall here in Northern VA. 

The sun is shining and I have opened the windows to allow a breath of fresh air into our home. I love this time of year. I truly do. It encompasses all my favorite things. Football, apple pie, applesauce making, pumpkin bread with walnuts and mini-chocolate chips, beef stew, roladen, hot chocolate with marshmallows, wearing hand knits and not perspiring in them, boots, jeans and lots of pretty  scarves.


The leaves are turning and the breeze is blowing and it is just beautiful. I believe Anne of Green Gables got it right when she said "I am so glad I live in a world where there are Octobers.

Yes, I know it is just September but that means that October comes next. That is something to be very thankful for. 


So let's talk a little fashion shall we, because who doesn't love a five inch hot pink platform heel to just make an outfit sing for the Lord. I know I do. LOL!

Last week, I was up late one night and as is my custom, I was trolling through the Nordstroms website looking at shoes. The SJP line is just spectacular and if they were a smidge wider across the bridge of my foot OR say $300 less a pair, I might own them all. Just kidding...or not. Anyway, I saw this pair of hot pink five inch heals and squealed for joy. I love color and fabulous shoes, so this was the perfect combo. I threw the photo up on FB and said "Don't these shoes say, come dance with me?"

This started a FB thread about shoes and like and dislikes, shoes sizes and how hard it was to find certain types of shoes, etc. Needless to say, three days later these fabulous shoes shoes up on my doorstep via the UPS man with a note from the most wonderful KH "Anything I can do to put a smile on your face. Enjoy."


Whaaattt????

I cried. I slipped these beauties on and danced. The sweetness and generosity of you beautiful people astounds me and just makes me so happy to be human. I don't even have words to describe the messages of love and outpouring of encouragement we have received this week. You all know how to make a gurl feel loved. SO thank you KH for your fabulous taste in shoes. I wear them today in your honor. 

Since the shoes are a fabulous pink, I kept everything else understated with black and white. I have Youth MInistry tonight while big brother holds down the fort with Miss Courtney, so comfort is also in the equation. 



Absolutely nothing here is new, except the shoes. It's all been showcased here in What I Wore before, accept I don't think I have ever paired this clutch with these pants before. KH's gift pushed me to take a walk on the wild side today and I have to say I like it. It's bold. It's pretty. It sums up how I feel in this outfit. 

I mean I feel like I could run for a mile in this outfit...shoes included. 



LOL! I know, I know, cheesy...but I had to try. I mean check that balance baby. Ah.may.sing. 

Just sayin. This gurl got skilzzz...

September also happens to be my birthday month. On September 25, I will turn 47 years old. With everything happening with Miss Courtney, somehow that 47 years feels a little heavier than in the past. Someone asked me yesterday how I felt about the possibility that my girl might go to heaven on my birthday. I took a deep breath and felt nothing but joy. I answered honestly, "It would be a great gift to me, for her suffering to be over, wether it be that day or any other."

I mean that from the bottom of my heart. My daughter deserves a beautiful and peaceful send off to her beloved Lord no matter what day that falls on. This month, next month, the month after. We have prepared ourselves as best we can and we are surrounding her with lots of love and laughter everyday. She is being held and sung to, stories are being read and when she needs to sleep, she is snuggled in her favorite blankets, made by the hands of those who have spent 22 years loving her. 



Courtney's sweatshirt says it all. Thank you, Thank you, Thank You. It is a beautiful, peaceful time in our home and I would not have it any other way. The doors are open to those who need to say their goodbyes and she smiles for each one, always leaving room for a miracle if God so chooses. She is a gift to me and to her daddy and big brother. We are the ones who are blessed beyond measure to make this journey with her.

Happy Sunday!!

+++++++++++++++++++++++++++++++++++++++++++++++++
PS. Nothing yet for Jerry on the job front. His last day is Sept 19 unless he finds another spot within the company. Please pray with us and ask St. Joseph's intercession on Jerry's behalf. 

PSS. With his impending lay-off, we have the PayPal button open as well as the GoFundME to assist in paying those bills. The total rose this week and is now around $6750 in what we will need to pay. That's with three of the hospital visits. There is one more set of bills coming. Thanks for your kindness!!

PSSS. Jesus We Trust In YOU!!

**way's to help with Courtney's medical costs/daily care expenses**

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal
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Go take a photo and join us won't you? Head on over to FineLinenandPurple and link up. Then you can head over here to Watch What I'm Wearing, celebrating modesty and fashionI'm also over at Sunday Style @ Plane Pretty , Tucker UpGet Your Pretty On and The Pleated Poppy. It's a party!

Saturday, September 13, 2014

rainy days and smiles...


We had the privilege of taking Miss Courtney to church last night for an hour of Adoration just for her. Several fellow parishioners and friends, came as well and for an hour before Our Lord, we prayed for God's will to be done. I held Courtney through it all, keeping my eyes on Jesus and telling him over and over how much I loved him and how ready I was for my daughter to come home to him. She had run her race and Jerry, Jonathan and I would be OK without here here. I smiled and thought of my beautiful girl, in her glittered high tops, mop of blonde curls and a super hero cape, ready to kick some serious butt for Jesus. What a powerful intercessor she will be, even more so from heaven than she has been here on earth.  

Not one tear was shed. All I felt was incredible joy and a flooding peace from my head to my toes. It was so wonderful to hold my daughter in my arms and listen to her sing and laugh in the presence of the King. It was a gift from Jesus to this very tired Mama. One I will never forget. 

Afterwards, surrounded in prayer, Miss Courtney was given the Anointing of the Sick. She hummed and smiled during the Sacrament as she had during the previous hour. It was as if she was telling me "No worries Mama. God's got this. It's gonna be A-OK."  

This morning we woke to a rainy fall Saturday filled with lunching ladies, football and beautiful laughter from our girl. We were told a few weeks ago that this journey of goodbye with our daughter would have good days and bad. Today could be filed in the "good day" category and we are grateful for it. 


I had the privilege to meet up with Courtney's former instructors from the Kilmer Center, where she attended school for almost eight years. Miss Betsy and Miss Hye are family. They loved my girl through so many ups and downs always seeking the least restrictive environment in which to teach her in. How I love these two selfless heros. To teach a special needs child is not just a job but a vocation. Kilmer is filled with heros like these two. We were blessed by our many years there.

They came by the house afterward and sat with Miss Courtney. She hummed and smiled and they all held hands for about an hour. It filled my heart with such joy to watch her smile at these two very familiar voices.  She just kept looking from one to the other and smiling and humming. I know they were here to say goodbye but when you leave room for God to allow a miracle, you never know what's going to happen. All I know is that it brought Jerry, myself and those three beautiful souls great joy to be together again. 

As we move forward, we will take each day as it's own little jewel. We will appreciate what we have with our daughter and stay present in that moment. God has not given us more than that, so we will honor him and love Miss courtney and each other as best we can. He ask nothing more than that. 




Winnie the Pooh is very special in our house. It was Jonathan's favorite as a child and remains so to this day. He has spent hours reading Courtney the stories over the years. When Jonathan was four he decided that Jerry was Eeyore, I was Tigger and Jonathan was Pooh Bear. Miss Courtney  has always been Piglet. I saw this print on etsy over a year a go and knew that one day it would be in our home. I received an etsy gift certificate from a lovely reader and took my shot. It arrived today. 

Perfect timing, don't you think? Especially if you imagine it is Courtney (Piglet) talking to her Papa (Eeyore). She is preparing us slowly but surely for a tomorrow where we will no longer here her humming or giggling. 

It's all going to be OK. In God's perfect timing, it will all be OK.


**please consider helping with Courtney's extensive medical bills**
we humbly thank you from the bottom of our hearts

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal
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