Sunday, September 21, 2014

being left behind...

** this post is honest, deep and may be laced with profanity from time to time. I warn you so you know I am being real and there will be no happy clappy party. You may need kleenexes...just saying...**



This evening was the beginning of the goodbyes. It's part of our plan, my sweet SIL and my two nieces came by for dinner and then they helped me go through Courtney's closet and dresser to clear out her old clothing that is now two sizes too big, so we can put her new things away. 

As I held each piece, there was a story to go with it. There was laughter and a few tears. I thought I handled it pretty well. I set aside several things that were dear to me for her memory quilt when the time comes. 

There was one moment when one of them tried on Court's USNA sweatshirt. Jerry looked at her, smiled, hugged her, and walked away. The look on his face broke me. The realization of what is coming is sinking in. There are no words...

The girls tried more things on and I sent them home with several bags of clothing, with more to go to other friends/family whose daughters are that size. It made this chore a little lighter with family. To know that Courtney's things will be loved and cared for a little while longer somehow made it bearable. 

I held my daughter tonight after a hard day for her. Court is struggling under the heavy dose of meds to try and keep the seizures at bay. Her weight continues to drop and the coming weeks and months will be filled with more days like today. No humming, just staring into space. 

I don't know how I am going to do this. I don't know if I can let her go with grace. I talk a damn fine game my friends but my heart is breaking a little more everyday as I hold her broken little body as it wastes away. This is so freaking hard. I rejoice for where she is going but damn I want to go with her. I don't want to be left behind. 

I am often told that my ability to remain positive in all this is amazing. Let's get very real for one moment. I am not always positive. I can't be. My daughter is dying right in front of my eyes. Who the hell would I be if I was happy clappy all the time? 

Yes, I am so grateful and humbled by so many who are making this journey easier. Truly I am. Those love bombs allow me to fully concentrate on my daughter and caring for her in these last months.



But if I am totally honest with myself, I am way pissed off that this is how it's going to end. I know, it's useless and I struggle with that anger because I sat in it for seven years when she was first dealing with the seizures. I know how destructive it can be and I have two men who need me to be strong. 

So I try and stay in that middle place so I can handle the day to day needs of my girl. It's getting harder as people come and say goodbye because I know that I will have to do the same soon. I just don't want to let her go. I want this all to go away. What I wouldn't give for it to go away.

Tonight I realized how challenging this is going to be helping everyone else say goodbye. I want to slam the door and just hold her but I know that my family needs to say what they need to say. It's important but damn it's hard. 

Forget hard...this sucks a shit pile! 

This girl is loved by many and deeply. I know that I am not the only one whose heart is breaking but I am the Mama and  I don't want to let her go. She came from my body, fed at my breast, and I have held this child through every hardship in her life for twenty-two years. I don't know what my arms will feel like without her in them. 

I don't know if I can do this. 

It just hurts too much. 

No ones heart can withstand this, especially mine.

** 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

Saturday, September 20, 2014

mustang sally rides into saturday...

mustang sally...

We have our plan in place. The love bombs keep happening. I needed to take a moment to say thank you to each and every one of you who are praying, sending love bombs, helping financially, or spreading the word about our beautiful Courtney. We are overwhelmed with gratitude. Truly we are. I am stunned at the response. Just stunned. 

God's provision should never be questioned. Lesson learned...again. (face palm)

Today Miss Courtney is wearing her second #TeamCourtney outfit. A lovely soft cotton horse print tunic and a very comfy pair of Navy blue sweats. She is happy even though she does not look it in the photo. 

We had a rough evening here yesterday. Two and a half hours of cluster seizures that followed one whopping 9 minute grand-mal seizure. Wowza! Miss Courtney fought hard. We had to administer rescue meds and she is still coming back form all the excitement. 

So today it's been quiet here at Chez Lenaburg. 

We will have company for dinner. Aunt Pam and my nieces Jessica and Samantha are up this way for a football game, so burgers on the grill it will be. I am glad they will be here to spend some time with our Courtney. It's important these days that the doors are open and people are allowed their time to say what they need to say. 

Now for a #TeamCourtney update. 

First, the Amazon Wish List has been updated. What you will see in the link is what is left to be purchased on the list. We cleaned the deep freeze today so we are ready for the frozen meals as they arrive. I also added some lotion to the list for Miss C's very delicate skin and baby yogurt we used in her blended formula. There are a few more articles of clothing that will help with layering her as the weather changes. She is so thin she has no body fat to fight with. Warm and comfy is the name of the game. 

There are also gift certificates to local restaurants and of course Starbucks <g>. Many of you have asked about other gift certificates for Courtney. The two places I get things for her is Nordstrom's (being a former employee) and Macy's. Gift Certificates to those establishments are always welcome. Also gas cards to any of the major stations, again always welcome. It's $100 to fill up the wheelchair van, so that is always fun. Not. 

Sometimes one of the boxes is for Mama! Score!

Several of you have asked about her funeral arrangements and expressing a desire to either help financially or with your individual talents for the Mass. We will be meeting with the funeral home in the next two weeks as well as with our Pastor to make plans. I will know more then. As far as Courtney's casket and outfit for that day, those are taken care of (Thank you Lord for such generosity).

So where does that leave us? 

Any monetary donations given to the GoFundMe page will be going to pay off medical debt. It is extensinve. In the last five years alone we have accumulated almost $75,000 in debt. This is a drop in the bucket for many families who have special needs children, believe me. It is our plan that I will go back to work once this is all over to help take care of some of that. Until then, we pay what we can and keep moving forward relying on the Good Lord above to make it all work. 

If you donate to the PayPal, you have the option in the "notes" area to direct that to something specific. For example, this morning my friend Patty took me to Dinner Done, a local establishment where you can make meals for your family out of fresh ingredients already shopped and chopped for you. All you do is go in and make them up, bring them home and freeze them. It was awesome. I came home with three meals already set for this week which are now in the freezer. (Thanks so much Patty. It was awesome)

I received a lovely donation this morning in which they asked me to use it for dinner delivery, to help ease the dinner hour burden. I have set that aside to go back to Dinner Done next week or the week after. Another donor asked me to use their donation for some new books for Courtney, since we read to her at least two hours a day. I did that in their honor. 

Just let me know if you have a preference and I will do my best to honor it. You are a part of this journey. We could not have done this for twenty-two years without you. 

Also, several of you have asked what you can do for my birthday this Thursday, September 25. My grey hairs tell me that #47 is going to be an interesting year. LOL!! 

Taking a deep breath here and honoring your request to ask for something for myself...ugh...so hard...

It's not that I don't want to do things, it's just that you all have already been so generous that I feel to ask for more is just so uncool. However, I promised so here you go.

Other than praying for me and my daughter as you have been doing, sending sweet notes, which you are also doing, the only thing I truly would love to do is get my hair cut, nails done and a facial for my poor rosacea face. I was given a facial once as a gift and let me tell you, life changing. SO awesome. 

There, I did it. I actually asked for something for myself. I want to go back and erase the whole paragraph but I promised at least ten of you awesome readers I would do this, so here you go. This is where I would go for the hair cut and facial if you are moved to help with a gift certificate or you can just tag it on PayPal. 

I feel like throwing up. I tell you,  I will beg, borrow and steal for my kids to provide what is needed, but to ask for myself feels icky and presumptuous as hell. Please know that I appreciate you even thinking about such an occasion in the midst of everything else going on. Truly, thank you.

Lastly, many of you have asked is if there is anything you can do for Jerry or Jonathan. Jerry is so blown away with the Lord's provision, he is still speechless from yesterday. LOL! He is a HUGE military history guy and books are his passion, so Amazon take it away. My Jonathan is a HUGE anime, comic book, video game guy who loves all things computing. Again...amazon take it away. 

They both are very excited that there is a possibility they will not be eating spaghetti or eggs and toast five days a week this week. Very, very excited! So thank you one more time for the frozen meals.  

That's it. That's all I've got. Miss Courtney continues to fight the good fight and we continue to wait upon the Lord for the signal that today is the day she will come home to Him. 

We are honored to be walking this journey with our girl. She deserves the very best we can provide and come hell or high water we will do what we need to to keep her happy and comfortable until the end. You have helped so much in making that possible and we will be forever grateful for that.

We will see you tomorrow for What I Wore. There may be lip synching again. Just saying.     

Blessings and Grace, 


** 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

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. 

"Don't get your hopes us, they 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 and my deep freeze 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
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