Saturday, October 18, 2014

grandparent love...


Jerry's parents got into town last night for a visit with Miss Courtney. They brought Jerry's older sister, Auntie Jo, along for the ride. It has been a lovely 36 hours filled with lots of smiles from Miss Courtney and even a few giggles. 



We all know that this will probably be the last time they are able to be with their granddaughter, so the hugs and kisses are abundant. There have been a few tears here and there as well, but overall, we are concentrating on the joy. Miss Courtney is now weighing 75 pounds and beginning to show signs of real fatigue with changes in her breathing pattern throughout the day as well as her sleep patterns and level of general comfort. So we listen to our girl and love on her as she allows. 



I shared many of these photos on Facebook and instagram already but wanted to share them here as well to remind my future self that love always wins. No matter what happens, how or when, we loved our Courtney with all we had. Her smile lights up the room and makes my heart bloom. The thought of not seeing it, breaks me. But what a privilege it is to love her. 







"We humbly thank you for any help paying Courtney's extensive medical bills 
and taking care of her final arrangements**

We Love the Lenaburgs - Team Courtney Fundraiser

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Thursday, October 16, 2014

the devil is in the details...

No seriously...he is. He is there to try and screw with your head and your heart on a daily basis. He wants you (and me) to be discouraged and distraught. He wants us to doubt that God is with us and guiding our steps even though we may question the road we are going down. 

This past week has been challenging both emotionally and spiritually. It's OK. Challenge is not new to me. It's not fun but not unexpected either. The thing that is hard for me is when I have done everything I can to face it and deal with it but the issue keeps coming up and you have to just get through it as best you can. That part is exhausting. 

I get asked quite frequently how I face these challenges each day and still smile. Ha! Let me assure you that I do not always smile my friends. Ask my husband or my son. God and I have had quite a few knock down drag out convos these past few decades. His confidence in my ability to handle so much makes me so freaking mad sometimes. I beg for Him to just keep going and bless someone else. 

Does He listen to me? No. he just piles on until I am flat on my face, prostrate before Him begging for relief. As my husband Jerry says, it's the only way to shut me up. Gotta love his brutal assessment of his wife's personality. That's OK. He's cute. I'll keep him. For now. (wink, wink)

Here is my fool proof plan to survive the onslaught of God's abundant confidence in my ability to deal with piles and piles of shippy pippy clippy crap and still smile. 

#1
Chocolate and caffeine 
Recently I tried to come off both sugar and caffeine. Then the sewer line collapsed. That was the end of that. I always have some York Peppermint Patties in the freezer as well as a minimum of a pound of dark roast coffee on hand. This way as I am dealing with whatever ick pile is rolling my way, I don't kill anyone. 

#2
Daily Prayer
Now let me be clear here. I know that some of you spend time in meditation and deep prayer. That is awesomesauce. If I try to deeply meditate, I will be resting deeply in the Lords presence and wake up drooling on myself. Seriously. I would. So my prayer life looks a little like this...

Wake up - thank the Lord for this day and ask Him to be with me throughout the day. Nothing formal, just an introduction. 

Getting Miss Courtney ready for the day - pray over her as I dress her, asking God to watch over her and thanking Him for getting her through the night. Lots of hugs and kisses are given to Miss C and there is a constant litany of thanksgiving for her. I also ask Our Blessed Mother to watch over our girl. 

The Rest of the Day - repeat the above actions over and over and over again. 

At Bedtime - I thank God that we all got through the day and beg Him for sleep. 

That's my prayer life with the add-ins of a rosary or Mass or a Holy Hour when I can and of course the constant stream of begging prayers that sound a little like this "Seriously Lord. Come on. Pass on the blessings to another household. This is just too much." Oh yeah, me and the Omnipotent One, we go round and round and round. It's our dance...we get down and boogie. 

#3
Laugh and Dance and Laugh some more - 
That's right people, turn on the iPod and move it, groove it, let it loose and dance, dance, dance. Shake that money maker and get jiggy with it. Then laugh, at yourself, at life, at the absurdity of what is happening at that moment and find the humor. Trust me it's there. 

That's it...that's what I do...day in and day out. 

It's my jam. 

Ooohhh jam...that sounds yummy. Raspberry anyone??


"We humbly thank you for any help paying Courtney's extensive medical bills 
and taking care of her final arrangements**

We Love the Lenaburgs - Team Courtney Fundraiser

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Tuesday, October 14, 2014

wave on wave...


Monday came and went with lots of rain outside and lots of sleeping for Miss Courtney and her Mama inside. We both needed it. Badly. 

So we took over the sofa, hot coffee at the ready for Mama and extra snuggles for my sweetie.  We watched Hallmark movies, Castle re-runs, listened to "The Secret Garden" on the iPod and napped when the ZZzzz's attacked. I gotta say it was not a bad way to spend the day. 

Miss Courtney is now weighing in at 77 pounds. It's hard to watch. We changed formulas and that seemed to help her with some gastro distress issues she was struggling with. She is much more comfortable and smiling again. That is such a gift to us right now. 

Comfort and smiles are the best. 

Once I put Miss Court to bed, Jerry and I watched a few episodes of NCIS on DvD and then we headed to bed. Me? I tried to sleep, I did. I just didn't have it in me. After an hours of counting sheep, praying, counting sheep again and again, I quietly came downstairs. 

I headed into Miss Courtney's room and just watched my girl sleep peacefully. Sometimes her innocent beauty just takes my breath away. It doesn't come from me, it comes from God. That peace and that sweetness that she radiates every moment of every day. I stood there and began to have a panic attack. 



My heart started beating and I was sweating and my hands shaking. I just could not control it. I was looking at my sweet girl knowing that there will be a day when I come into this room and she will not be here. It just hit me square in the heart and I lost it. I grabbed a pillow from her bed and sat on the floor and wept into it. 

Grief comes wave on wave out of nowhere these days. I love my babies. I love them with all I have. The thought of not seeing Courtney's buck toothed smile or hearing her trucker laugh just breaks me. I don't know how I will survive without my Courtney with me. 

The very thought takes my breath away. This long goodbye may be the end of me. Truly. 

I.can.not.breathe. 

I stayed on that floor for hours going over memory after memory in my head. The day I found out I was pregnant with Court after we had miscarried our second baby. The day we found out she was a girl. The day we chose her name. The day she was born and we got to meet her, hold her and take her home. 

They let us take this beautiful creature home. US? For reelz? The day she had her first siezure. The day of her baptism. Her first ER visit, her first admit, her first allergic reaction. The day they told us she would not survive her first birthday. Her third birthday. Her seventh birthday. 

The day she took her first "steps" in her gait trainer at the age of six. The day she said "Maaa" for the first time. So many memories. So many GOOD memories to outweigh the bad. We have been so blessed by her life. This child has changed Jerry, Jonathan and I at our very core. She has changed how we look at the world and all the awesome souls in it. 

Courtney teaches us everyday what the "dignity of life" actually means. 

She.is.love.

She.gives.love.

She is "seen" as perfect and unique in our eyes and in God's. 

She is honored and her dignity remains intact with every diaper change, chair snuggle time, story read, song sung, every tube feeding given, every doctors visit, late night holding, reassurance during a seizure and massage and bath given. 

She.is.loved.

With waves and waves of love. 

Now and forever. Here or in Heaven. 

Always baby girl. Always. 


"We humbly thank you for any help paying Courtney's extensive medical bills 
and taking care of her final arrangements**

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Sunday, October 12, 2014

sewage and pinched nerves...oh the glory...


If your happy and you know it clap your hands...unless that act makes it feel as if a hot knife is being plunged through your bicep and neck. Oh yeah baby, this Chica woke up yesterday morning with a pinched nerve in my neck and a swollen deeply bruised bicep muscle due to my not so smart navigating through Courtney's doorjamb while carrying her to bed last night.

I didn't really think about it when it happened. I said ouch and then went on about my business, until I tried to actually use my right arm yesterday morning. Not good. Not good at all. Once I got checked out to make sure nothing was broken or dislocated, I grabbed coffee, muscle relaxers and found my way to my chair with a heating pad.

Fortunately for me, I hold Miss Courtney with my left arm so we got some good snuggling in. She even smiled and giggled for me. What a gift. 


As for the sewage situation, it is all fixed. Wow what a mess. I have never appreciated modern plumbing more, than in this last few days. The joys of a hot shower and flushing camode are a thing of beauty let me tell you! Laura Ingalls Wilder just became and even bigger hero to me. Wowza! No outhouse for me thank you very much. 

As always I am amazed at how God turned that situation around for us. He is one amazing God. Thank you for prayers, love and financial support. The funeral bill is taken care of as is the casket. We have also been able to take care of a few longstanding medical bills which has been a great relief to us. There is still much to do financially but I know we will figure it all out in time. We always do. 



As for Miss Courtney, she is tolerating her new formula well. No gastro distress or discomfort so far. Unfortunately, her weight is still dropping a few ounces each day. To be expected but hard to watch nonetheless. She is happy though and seems very calm most times. Her favorite things are snuggling with Mama and being read to by Daddy. Big Brother always takes the prize though, because no matter what is going on, when he walks in the room, she is all smiley, googly eyes adoring. Some things never change. 

It is a beautiful fall day. I think it might rain at some point but no matter. My birthday garden is going strong. Today's Mass readings contain my favorite verse...Phil 4:13..."I can do all thing with Him who strengthens me." I know the coming weeks will be difficult and stressful but I also know I do not walk this path alone. 


My God is with me, so who can be against me. I found this song this morning on my iPod. "I Am" sung by Jill Phillips has always been one of my favorites. God is constant...He is always with me. For that I am so grateful. 

Enjoy this day my friends ad ALL that comes with it. Live it to the fullest. I know we will. 


"We humbly thank you for any help paying Courtney's extensive medical bills 
and taking care of her final arrangements**

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Thursday, October 9, 2014

if only she would stay...


Miss Courtney spent most of her dat in bed, all rolled up in a ball comfy and cozy. I finally got her up around three this afternoon and she was agitated. She didn't want to be held, she just wanted to stretch out. So I put her on her mat and she rolled form side to side and hummed. I tried to hold her one more time and she would not have it. So back to her happy mat she went.

I sat down in our chair and tears streamed down my face. What if she wouldn't let me hold her agin? What if she just needed to be in bed stretched or curled up or snuggled in between pillows for the rest of her time with us?

I quietly cried. 

My Mom took my hand and told me to let it out. She reassured me in that moment that all would be well no matter what. Courtney wasn't rejecting me, she just wanted to be alone for a bit. Typical young adult she said.

I don't know why it just hit me like that. My heart aches so bad tonight. The thought of never holding her again is too much for this Mama to contemplate. Just too much.

Tonight, after her last tube feeding, Miss Courtney started having seizures.  I found myself holding my sweet girl as she suffered though one after another, as she worked her way through breathing and pulsating and crying. An hour went by, then a second one. Finally she calmed down and fell asleep.

In my arms. Where she was meant to be. Where I want her to stay. Forever.

I held her as she breathed in and out, in and out. I kissed her beautiful head and stroked her hair. I lifted her sweet hands to my lips then held them close to my heart. This sweet beautiful creature who God decided I would have the privilege to love for her whole life and more, curled into me and that was the best part of my day. Plumbing be damned.

I am so very tired. 

I don't want my Courtney to die. I don't. 

I would deal with 20 seizures a day and her face turning blue and her crying out for her Mama, if only she would stay. 

I would deal with adult diapers until I can't move, if only she would stay. 

I would get up every three hours to feed her for the rest of my life if she would just stay. 

Whatever had to be done, I would do it, if she would just stay.

Unfortunately, God has a different plan in mind. At least that what it looks like tonight. I gotta say I am not a fan of this plan. Not.a.fan.at.all.

Waves of grief come over me with no warning and I have Kleenex boxes at the ready on every surface in the house. Not the best decorating look I have to say.  

Every time my son goes to work or leaves to go hang out with his friends, he first stops and gives his sister a kiss, whispers love that only she can hear and then heads out. When he comes home, he goes straight to her bedside and does the same.

It.breaks.my.heart. 

Whatever has not broken already shatters again at the thought of Courtney not here to hum or yell or kick her boots into the street in the pouring rain. 

I do not know how I will survive this loss. I don't even want to think about it. I just want to hold my sweet girl for a little while longer. Please God...just a little while longer. 

If only Lord, you would just let her stay...


** we humbly thank you from the bottom of our hearts 
for any help paying Courtney's extensive medical bills and taking care of her 
final arrangements**


We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Wednesday, October 8, 2014

porta potties, moist toilettes and miracles...we got them all...

I know. I have used this photo before but cut me some slack.
 I am dealing with sewage here. 
Remember when I wrote this little post a few weeks ago allowing room for a miracle when it came to our Courtney, her health and well being and the future of our family???

Sit for a spell my friends and let me tell you about a little miracle or two...

I am overwhelmed, humbled, dumbfounded, shocked and utterly speechless and what has transpired today. It just blows my mind. 

Yesterday, after the tub and toilets backed up with nasty sewage, we called a plumber we trusted and had used before to come out and see what could be done. After trying unsuccessfully to snake the drain three times with some pretty intense equipment, we were told that the main sewage pipe extending from the front of the house to the street had collapsed and we would be looking at an $8-10K repair. 

Holy Crap! Like...literally...who knew crap and crud cost so much to repair?? 

I wanted to vomit right there on the spot and my husband almost had a stroke standing in place. An impending layoff date for my husband on October 24 as well (unless we have a miracle and he is redeployed with the company or finds outside employment), hemorrhaging medical debt and increased living expenses due to Courtney's care, and now no toilets or showers?? 

Are you there God? It's me Mary...hellooo...helllooooo...

(silence)

We were both stunned that this would be happening right now with ALL we are facing. 

Job thy name is Lenaburg. 

Unreal. 

What came to my mind in that moment was Of course this would happen. We have a saint in the house who will soon be ascending to her Father's house. The devil will do anything to distract us with anger and dissatisfaction with the Lord's provision as well as try and discourage us, pushing us to despair.
  
I told Jerry what I thought and he shook his head. "Not today, but I will admit he is really beginning to pi## me off." 

So, love this man!!

Listen up little evil dude...Today and EVERYDAY we trust in God's provision!

We both took a deep breath and with hands shaking made arrangements for the video plumber dude to come back this morning to see exactly where the collapse was so we could begin to collect estimates on getting the repair done. Neither of us had any idea how we were going to pay for this since the credit card is maxed out with Courtney's stuff and the bank balance in savings is exactly $5.02. 

Not even close to covering a sewer pipe repair. 

It was suggested that we call our home owners insurance. Jerry looked up our policy and in black and white it stated that "regular wear and tear" (the plumbers term) was not covered. So Jerry called to verify and spoke to a lovely individual in the policy department who was very kind but repeated what was written on the policy. 

That was the end of that. We were going to have to find a way to pay for this. 

I did what I do every time we are facing an impending disaster, no matter what part of life it pertains to. I went on Facebook and instagram and asked for prayers. Not only did I get them, but we got lots of offers to help with laundry and homes where we could go shower, even a portapotty. We also got several names of plumbers and other professionals who could help.  

This is the reason I love social media so much. People want to help.There is so much good in the world. So.much.good. We wrote down the names and began calling. I also wrote a quick post describing what we were likely facing. Then I walked away for the internet to take care of my Courtney. 

After a lovely cucumber-mint moist towelette bath, I got dressed this morning to face the day. I had no idea what God had in store. 

No.idea.

When I got online, I was speechless. So many awesome Catholic bloggers had picked up my post and were spreading the word to help us with prayers, fundraisers and practical help. The video plumber dude arrived in the midst of my astonishment and things began to get very interesting. 

When I say interesting, I truly mean it. I could not make this up if I tried. This is going to blow your mind...

Our insurance company called while the plumber dude was here. They called us. I asked why they were calling since we were told not 24 hours ago that this issue would not be covered. The lovely agent told me that after further review, since the sewage had backed up into the house, our insurance carrier had agreed to cover the cost of diagnosis of the sewage problem, which includes the cost of excavation which is 90%of the bill!!!  

I had to sit down. 

I have not even begun to fully comprehend what took place over the course of the next several hours. The word had already gone out for help from you fine people and as of now, we have raised more than enough to cover ALL the costs associated with the sewer repair. 

Let me say it again...ALL THE COSTS of the sewage repair ARE TAKEN CARE OF!!

Oh, how the Mighty One works. How Glorious is HIS Name!!

The plumbers arrive tomorrow morning at 9 a.m. and will be done by early afternoon. Then I will be taking the hottest shower I can stand and flush every toilet while running the dishwasher and washing machine at the same time!! 

I am totally serious. I will. 

That's not all my friends. Let's proceed onto miracle number two shall we. 

A week ago Miss Courtney began to have trouble with her tummy and being able to digest the homemade formula we have made for her over the last five years. She is down to 79 pounds and suffers through hours of horrid hiccups and reflux due to her hernia and shrinking tummy. 

I tried everything I could think of. More time between feeding. Smaller feeding amounts. Changing the formulation to less acid foods. I talked with her Docs and they were as stumped as to why she was having trouble. She couldn't take the recommended canned formula because she had such a difficult time with it the first time she went on it years ago. That's why we started making our own. 

I began to have dreams that I was starving my child to death. I was having panic attacks that I was not doing enough for her and possibly causing her more suffering. 

I prayed. 

I read about the end of life process with special kids and I did as much research as I could to try and figure out a better way to make sure we are doing everything we could to support her. In the middle of all the trauma of the Great Sewage Debacle of 2014, I got a call from her GI nurse practitioner checking in to see how things were going. 

We brainstormed over what was happening and after doing a bit more research on her end, we came up with yet another new plan. Tomorrow morning I will be picking up a new formula for Miss Courtney and she will begin continuous  pump feeds. It will take a day or two to get everything ordered but we will be starting her in a hypoallergenic, predigested formula, the name of which escapes me at the moment. Our prayer is that this will alleviate her gastro discomfort. 

We will hook her up the the feeding pump and see what happens. I was talking with a sweet friend this evening and she reminded me that Miss Courtney was known for her miracle making ability and wouldn't it be awesome if somehow, someway God in His infinite wisdom, mercy and grace allowed our current situation to change for the better, giving us more time with our girl. 

I laughed knowing that miracles do happen all the time around this kid (see above sewage update for latest example) and it would not surprise me if she got up and walked. OK, maybe I would faint dead away if she did, but then the celebrating would commence. 

As I continued the conversation with my friend I also thought of another miracle that could happen. The one where our daughter goes home to Jesus and her mother does not feel like it's her fault because she had done EVERYTHING humanly possible to save her life, placing all the responsibility back into God's hands. 

To be honest, I think that the latter scenario is more likely and we are OK with that. Her seizures still come multiple times a day and she is still struggling to breathe through them. Weight or no weight, seizures rule our daily life and there is no cure for those. 

All this in less than 24 hours. Yep...my Courtney moves mountains. 

That's where we find ourselves this evening my friends. The extra funds raised above what was needed to handle the Great Sewage Debacle of 2014, will first go to funeral expenses. Once all of those are met, if there is anything remaining, we will use it to pay down the medical debt. 

God's generosity can NEVER be outdone!! NEVER!!

You hear that you little red dude with the horns...YOU WILL NOT WIN!! NOT TODAY!! NOT EVER!!

To God go the Glory now and forever...amen!

** we humbly thank you from the bottom of our hearts 
for any help paying Courtney's extensive medical bills and taking care of her 
final arrangements**


We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Tuesday, October 7, 2014

not even a pot to pee in...literally...


Yes, my friends...it has been that kind of day. 

As of right now I literally do not even have a pot to pee in. This morning while taking a shower upstairs the downstairs bath tub and cammode began to back up. This happens from time to time in a 1969 Cape Cod such as ours and it usually means we have a little back up in the main sewer line in the front of the house that requires a snake and some Drano. 

Oh how I wish that was the case today. Not only are we buying a casket for our daughter this week and paying off the funeral home bill as well as going through the liturgy for  our daughters Mass, all while taking care of Miss Courtney's daily needs NOW we will be replacing/repairing the main sewage line in front of our home. 

Oh yes my friends, you read that right. After getting out the BIG guns to the tune of $586, the plumber dude tried four different times and all he came up with was small chunks of mud and concrete, which lead him to make the conclusion that the line has collapsed. Such a repair/replacement runs from $8-10K...yes that is THOUSANDS of dollars. The video guy comes tomorrow (to the tune of another $500) to verify and take measurements as to where everything is so we can begin the repairs. 

Y'all I am so not freaking kidding when I tell you that I sat on my living room floor and cried as my Mother held my head in her lap like she used to when I was little. I am so done here. So freakin done!! 

Not only do we NOT have that kind of money, but we can't flush more than three times a day, shower longer than five minutes TOTAL (for three adults) run the dishwasher or do any laundry until this is fixed. That's really gonna make this whole hospice/my daughter's dying thing ever so much easier don't you think?? 

Seriously, at this point Job ain't got nothin on the Lenaburg's. It's looking more likely by the day that Jerry will be laid off on Oct.24 which just makes ALL of this ever more ridiculously awful!! What is the Good Lord thinkin?? 

I.am.so.done.

I am wrung out. I can't sleep. My girl get's more uncomfortable every day. My husbands blood pressure is through the roof!! There is NOT enough chocolate or ice cream in the UNIVERSE to make this better. 

So invoking St. Rita of Corsica and St. Jude Thaddeus, both patrons of impossible causes, we are going to trust the Lord at HIS WORD! He said He would provide WHAT we needed WHEN we needed it. 

I got nothing else...just me, my husband, my son, my daughter and my faith that God will make this ALL OK. 

Like now would be good Lord. When your Mother has to leave so she can go poo at the McDonald's you really know things are out of control and the locusts and frogs are coming next. 

So.not.kidding.

St Rita...Pray for Us

St. Jude Thaddeus...Pray for Us.  

 
PS. Not to worry my frugal friends, a second and third opinion will be sought as well so we get the best price. I need my plumbing back like yesterday!!

If you feel called to help us have a pot to pee in, consider pressing one of these buttons for the  
NEW SEWAGE PIPES FUND

ALL funds raised will go to fixing the plumbing until the cost is covered. If anything more is raised it will go directly to pay off medical debt or help defray funeral costs.  


We Love the Lenaburgs - Team Courtney Fundraiser

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