Wednesday, November 26, 2014

the sweetness of this day...


We are all fever free!! There was much celebration and dancing over the fact that whatever took down Jerry for three days and tried to take down Miss Courtney is no longer an issue. WooHoo!! Mama is doin her happy dance. 

Miss Courtney had such an awesome day today. It started out a little rocky with a whopping thirteen minute grand-mal seizure with all kinds of complications. I thought we were doomed to spend the day watching her seize. BUT...God had a different plan. After a two hour nap to recover, her not me, she woke up happy. I mean smiling, laughing, buck tooth grinning happy. Oh how I love those smiles. 



I spent the day moving furniture around getting ready for spending the day with my Mom tomorrow, celebrating life, love and family. I hung two full size quilts as new "curtains" in the living room. Well, they aren't new quilts but ones I have had. They are new at being used as curtains though. I needed something to make the room a bit less drafty this winter. They will do. My Mama taught me long ago to not keep what was not useful. So very happy I listened to her. Now I have a solution to a problem and it didn't cost a dime. Score!!



The big space in the middle is the spot for our artificial Christmas Tree. We will put it up with my Mom tomorrow. I know it's early but Miss Courtney loves the lights so lights we shall have. This will be her last Thanksgiving this side of heaven and we will make it spectacular. 

I also cooked the turkey. I know, it's Wednesday NOT TurkeyDay, but with every thing that has happened in the last two months, I knew that I needed to take advantage of Courtney's good day and make the most of it. Who knows what will happen tonight/tomorrow? It came out beautifully. I have it all carved, bagged and tagged for a quick microwave reheat tomorrow. 

I feel so incredibly blessed this Thanksgiving. Miss Courtney is hanging in there having gotten through almost three months (this week) of the three to six months the doctors gave her. Yes, things are changing and she is seizing more without being able to stop them. Her weight is now at 69 pounds and they have given us plenty of warnings about what is to come as her weights drops more. 

Jerry and I have chosen not to dwell on those details. God's grace will come as we need it. Of that I am sure of. We were chatting this evening and he asked me why I was so happy. I mean, his last day at work will be Monday if we don't hear anything to stop the lay off, Courtney is dying and I am sitting on the sofa sipping tea and smiling. 

I can't really explain it well but I just know that my sweet girl is doing what God is asking of her and that makes me so damn proud. Yes, it's hard to watch and when she does go home to her Beloved, I will shatter into a thousand pieces but for now she smiled today. She laughed at us. She giggled when we tickled her. She hummed as I sang to her. She smiled at her big brother reading to her. She was just so darn happy. 



With her happy, how can I not be happy too. The hard days come, hell we have had a week of them, but then grace falls from above and we get through it. We will get through this as well. 

On this Thanksgiving, no matter what is happening in your life; good, bad or indifferent, take a moment and thank God for ALL He has provided for you. Even the hard things. Trust me when I say, He will never abandon you...NEVER. Take a moment and hug your kids, kiss your husband and just breathe in the joy of life. Breathe in the love of a Heavenly Father who is breathing you into existence every hour of every day. He wants such good things for you. 

Even now, watching my child preparing to go home to heaven, I know that God loves me. I know that He loves my Courtney. Even though some look at our life and only see difficulty and burden, there is such joy in loving this special kid. There is grace in surviving her seizures and when she stops breathing, God is so present in that moment, keeping me calm and focused on what Courtney needs second to second. 

It is such an honor to be her Mama. To love her, to care for her every day no matter what comes. To watch how other love her and us through her. I am so very thankful for my life. So very thankful. 

Thank you for wanting to provide a Christmas for our family after such an incredibly trying year. We had just a little bit of fun choosing things that we loved but would not purchase for ourselves since there are so many other needs in the family. I will admit that it has been hard to accept at times but Courtney has taught us so much about humility and receiving love from so many who wish to share this burden with us. 

Thank you for love bombing us, especially Jonathan who deserves so much more than we could ever provide. He has sacrificed much over the years, not just material things but time with us as well. He has seen more than his fair share of suffering but that has also helped him become a more empathetic and caring man. In the end that's what truly matters. We could not be more proud of the young man God is calling him to be.  

The links are below for those who asked. We are so very grateful for all God has provided and for ALL He will provide in the future. 



Jerry's job, a peaceful beautiful death for our daughter, a successful future for our son and enough love in my heart to overflow on a daily basis allowing me to serve as God needs me to, these things will be provided. I have complete faith and trust on God in this no matter how patient He needs me to be or how long He needs me to wait. 

God is good ALL the time. HAPPY THANKSGIVING!!




Tuition Assistance for Jonathan
put "Jonathan's Tuition" in the note section. 
          
 **We humbly thank you for any help paying off Courtney's extensive medical bills 
             and taking care of the cost of the remainder of her final arrangements**
We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Tuesday, November 25, 2014

very tired and very thankful...


Oh my heart the last 24 hours have been challenging. However, we have survived it and that my friends is only because of the good Lord above and His constant shower of grace. 

Grace to deal with my sweet husband who fought a 103 fever that accompanied vomiting and other bodily yuckiness. Oh when men get sick, they really do it up right. So off to bed he went with his loving wife checking on him every three hours. 

Grace to handle the challenges presented by the beautiful Princess Courtney whose weight is hovering at 69 pounds now and has zero immune system. I kept the two separated as best I could. Miss Court was NOT happy with that since time with her Papa is part of her evening routine. Courtney, like her father, is not a fan of change. Not a fan at all. So she was very restless last night and it took me a very long time to get her to sleep. Like one in the morning long time. 

My Mom was scheduled to come and help today. I warned her not to due to the illness in the house but she told me to stop worrying so much and came anyway. Thank God she did. We were able to get ALL the laundry done, defrost the inside fridge/freezer and it allowed me to pick up out turkey and sides from Whole Foods. 

I am proud to say that I survived that particularly challenging experience. Note to self: avoid all grocery stores the week of Thanksgiving. You will be ever so happy you did. OY VEY...so many people...so many bad attitudes...wowza. 

Between Jerry and Courtney, I was stretched very thin and I will admit that I am really feeling it. Jerry's fever is less but still present. I have been giving him a little bone broth to help him keep his strength up. The Doc said this could take three to five days to run it's course.  

He is however, well enough to start giving me instructions on how to reheat everything for Thanksgiving. I told him to hold his horses or he might be the one stuffed and roasted by Thursday. Unfortunately for Miss Courtney, she is now running a fever as well. Oh yippee. Just what I needed. To deal with that intestinal nightmare. So we will wait and watch to see where things go with her. 

No Thanksgiving feast until all stomach viruses are gone from our home. Yip.ee. Prayers appreciated...always.

As for me, I am tired but taking my elderberry syrup faithfully and hitting mega doses of Vitamin C. Jonathan is doing the same thing. I will sleep when Miss Courtney does. Trying to do so while she is awake in her bed is a lost cause for me. I listen to her hum and I can't sleep. So when she sleeps, I shall sleep or at least try. 

When I woke up this morning and my email box had exploded. I had more than 100 readers asking for Jerry and myself to also make a Christmas List on Amazon or elsewhere. Really? We really don't need anything but every time I said that, the answer was do it anyway.

OKeedokee dear people...you speak, I listen. We put it together this afternoon. The link is down below. Saying thank you feels like too little, but thank you, so much for even thinking about this, let alone acting on it. 

For those that are love bombing my son, you are so very kind. I will be wrapping each gift without letting him see them so that he can be blown away on Christmas morning. I am so very excited for him. He is such a gift to us and to Courtney. I am so happy he will get to feel those love bombs like his sister did.

If you want Jerry and I to be surprised then you might want to consider the "gift wrapping option". 

They say what does not kill you makes you stronger. We will see about that. This week has been a real test. So we will do our best to push through.  



           **We humbly thank you for any help paying off Courtney's extensive medical bills 
             and taking care of the cost of the remainder of her final arrangements**
We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Monday, November 24, 2014

still fighting...

Update at 12:34 p.m.Monday afternoon:
Apparently God has way too much confidence in me to deal with insane life situations. Jerry just came home from work with a fever, promptly vomited and is now in bed. Seriously Lord?? I mean really?? Prayers would be welcome. 




"The LORD is near to the brokenhearted And saves those who are crushed in spirit."
- Psalm 34:18, NAB


Well we are not crushed in spirit here this morning, just a little tired OK, maybe a LOT tired. I take heart from the song above this morning. My girl is here because God so desires it. She will go to Him when He calls her. 

We thought that was going to be yesterday. 

Miss Courtney proved once more that she is a fighter of the highest order. She gave us a run for the money yesterday. Seizures, not breathing at least twice, plus peeing once in 24 hours. None of these things are good by themselves but together, well, that just creates a whopper of a bad day. 

Jerry made it to Mass. I did not. By midnight all was calm and well and Miss Courtney was seizure free and sleeping. Mama felt like an 18 wheeler had run over her then backed up and did it again.

This is where we are right now. Things change on a dime and I never know what direction it's going to go in, so I just hang on for the ride. 

I hade planned to put up our artificial tree today but I think I may wait until Jerry is home to help. My exhaustion does not bode well for being able to have a tree stand nice and straight. 

Thanks for all the emails, FB messages, tweets and comments asking about how you could give Jonathan a little love bomb for the holidays, since we will not be exchanging gifts due to many different circumstances. You can find the links below. More info is here. 

Now it's time for a nap. Love to you all!



           **We humbly thank you for any help paying off Courtney's extensive medical bills 
             and taking care of the cost of the remainder of her final arrangements**
We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Sunday, November 23, 2014

jonathan's christmas list...

You asked (in the comments) that I set up a Christmas List for Courtney's big brother Jonathan. He was very surprised and humbled by your wish to show your kindness toward him and our whole family. So here it is. He dreamed big and has chosen everything on this list. As you can see, he is a HUGE anime and video game guy. He had a lot of fun putting it together. He said he felt like a kid again. 

He is also saving money for his next semesters tuition for computer classes at the local college. He is going after several computer certifications so he can find better employment. Right now he is the Asst. Mgr at Radio Shack. He is almost done with his a++ certification. If you wish to help with that, you can use the PayPal button below and put "Jonathan's tuition" in the notes section and I will direct it to him. 

Once again you all astonish me with your kindness. One day we will pay it forward with great pleasure. 

Blessings and Grace to one and all...




Tuition Assistance for Jonathan

70...69...???



"Put me to the test, says the LORD of hosts, And see if I do not open the floodgates of heaven for you, and pour down upon you blessing without measure!"  
 Malachi 3:10


A new low was reached today for our Courtney. She is now only 69 pounds. She has been suffering through hours and hours of rolling seizures over the past 48 hours. Last night she went on for almost ten hours before stopping. I slept in bed with her last night and held her as her body rocked and tolled with each seizure. Quite a feat I will say for the plus-size Mama to crawl into a twin hospital bed with this kid. So happy there are no cameras in her room. 

She cried last night. Real tears. She was scared and confused and in some discomfort. For Courtney to cry means she is in pain. That almost broke me to wipe away those little tears. It's just further confirmation for me that her time is close at hand. Tonight she has had rolling seizures for almost four hours. We cannot feed her enough calories to keep up with all the ones she burns with these seizures. Even with a continuous feed. It's just not happening. 

All I can do is hold her if she allows it and sing softly to calm her. There is no sleep at the moment for me. My mind is in a constant state of preparedness to listen for breathing patterns and distress of any kind. I am OK with that. It's a privilege to love my daughter through ALL of this. 

We weighed her after bath time and I was not prepared to see that six in front of the nine. It shocked me. I guess it's just more proof to me that as prepared as I think I may be for all of this to happen, maybe it's just not possible. I do the best I can to handle whatever comes and the rest I truly lay at the foot of the Cross. 

It has become easier this past week to let go of my fears and expectations. I chalk it up to all of YOUR prayers and the fact that I know in my heart time is short here for my girl. My Mom told me last week to stop and take it all in. Not to worry about the state of the house or if there are dishes in the sink, just take the time to soak up my time with her. 

I have made a decision. My time here in this space will be a bit lighter over the next few weeks. I promise to keep you informed of what's happening. I will keep posting to FB and instagram but you may see fewer blog posts. I hope that's OK. I just need to take the time to be present in real life. 

I am determined to take in every hug, every laugh, every smile, every time she will allow me to hold her in my arms, how her hair smells, how her body curls into mine and all those other intangible moments we cherish as Mama's. I feel like I need to fill up my memory bank for when Courtney has gone to heaven and I won't be able to hold her sweet little hands again. 

I will begin decorating the house tomorrow for the coming holiday. I don't usually do it this early but my heart is prompting me to get it done now. Courtney's favorite thing at Christmas are the lights on the tree. I want to make sure that she has that one more time. I know, I know, the lights in heaven far outshine anything I can do here, but she loves them so. Thanks to my friend S out in Washington State we have new lights for the tree this year so they will be brighter than ever. 

I have received several emails and FB messages asking what you, my sweet readers, can do for us this holiday season. It looks like Jerry will be laid off on December 1, 2014 unless we get that Christmas miracle by Wednesday of this week. Having known this for about a month or so, we decided not to have Christmas this year in the traditional sense. No gifts and such under the tree.  

Don't be sad. It's really alright. There is nothing we need. There is food in the deep freeze and now new lights for the tree. We have our Courtney for however long God grants us this and we have each other. I do need to get some marshmallows for the hot chocolate though. It's just not the same without them. 

We have what is important which are family and friends who love us and support us, a God who loved us into existence and will never abandon us, a roof over our heads, heat, water and ALL of you praying for a peaceful death for our daughter. What else do we need? 

Yes, there are still medical bills to pay and medical debt to pay off, but I know that God will help us take care of that in time. If you wish to help, the links are at the bottom of this post. You know we love you for it. As for Jerry's job situation, I am trusting that one to the Good Lord as well. He has gotten us this far, I know He will carry us the rest of the way. 

I will pop in here with news and photos when I can, I promise. Please know you are loved and prayed for by my Courtney and I every day. I do not know if she is strong enough to make it to Christmas or much past that. Only time will tell. I just know that my love and admiration for her grows exponentially by the hour. She is one strong woman of God, who is not wasting any of her suffering. Of that I am most sure. 

Keep praying for us, especially for Courtney and for Jerry. Sleep for me would be nice too and some peace for mind for Jonathan. He has experienced so much loss for a twenty-five year old. Sometimes it just gets to me. He is one strong young man. God has great things in store for him. I just know it.  

Go hug your kids and tell them how important they are to you. Tell them how much you love them. If you don't have kids, then do a random act of kindness in Courtney's name. Spread a little love and joy around. It's what she does every time she smiles. 

until next time...  




           **We humbly thank you for any help paying off Courtney's extensive medical bills 
             and taking care of the cost of the remainder of her final arrangements**
We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Thursday, November 20, 2014

quarter century...holy moly my kid is that old...


Today my son Jonathan turns 25. Yes...I had him when I was eight. Just kidding! I was a very young 22 year old clueless Mama married to a 25 year old clueless Papa and together we began our family. Trust me when I say there has never been a dull moment. 

Today my husband will take over the writing duties here in this space with a little wisdom for our boy. I hope you enjoy. 

Jonathan Douglas Lenaburg...Happy 25th Birthday!!  I love you more than coffee and chocolate...combined. I am honored to be your Mama. 

Love, 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Good morning Son!

Yup, rise and shine...today you are 25...yup, the big TWO FIVE...a quarter century.

Wow...that makes me...well wise beyond all knowing, of course.  And still able to sing Gangam Style...but only when it can cause maximum embarrassment..some things never change.

It seems just yesterday we are playing Darkwing Duck, Spiderman, and Mario Cart....by the way, why did I always have to be the villian?  Seems kind of unfair....just sayin'..and no I never lost on purpose in Mario Cart..your mother says I really do drive that bad.   I said I just need another kuppa shell to clear the beltway traffic...wouldn't that be awesome?

So...as you enter your second quarter century of life...here are some sage words of wisdom:

1)  Should you ever get married, always make sure the toilet paper roll is loaded...otherwise it can get really unpleasant really fast
2)  YES, should you get married, you will forever get yelled at about the toilet seat...one of life's mysteries.
3)  Always try and see the world with a sense of humor...after all there are a lot of crazy people doing stupid things in life...and...they make great internet memes in your head....but keep them there.
4) Always learn something new.  It may seem silly, but learning new things keeps you young...except learning to juggle chainsaws...that will not keep you young...but may turn you into an internet meme.
5)  Sadly, if you work for a company bigger than 10 people...there will be a need to do crazy things because of "company policy" and you will sometimes work for a manager that you think is dumb as a box of rocks.  Just remember that someday if you are the manager, you are also the box of rocks.
6)  Somedays, going to work just sucks.  Poverty sucks more.
7)  Try and read a good book every once in a while.  You might be surprise by what you learn.  I, for one, never knew you could put bacon in desserts until I read an awesome bacon cookbook...not that cookbooks make great literature, but they do have the best food porn pictures.
8)  Be kind to everyone...seriously, even when you want to "FALCON PUNCH" some idiot, try and resist.  Remember other people have bad days too.  Your mother tells this to me often...and she's right...but I may still falcon punch them in my head.
9)   Remember to make sure your belt and shoes match...this may not apply to sandles, flip-flops or sneakers, but someday...hopefully soon...when you get a real job :)....you will need to make sure of this.  
10)  Remember life is an adventure..kinda like the beginning of Indiana Jones where he is running away from the headhunters with blowguns...hopefully you will have friends with airplanes ready to help you....friends without pet snakes.

Finally, always remember that you Mom, sister and I love you and are proud of you...Happy Birthday.

Now, go take out the trash please.  
Love, 
Dad

Wednesday, November 19, 2014

without fear...


"She is clothed with strength and dignity, and she laughs without fear of the future."
Proverbs 31:25

I read these words early this morning and I felt like Our Lady was whispering into my ear to just chill out and stay focused on the task at hand. These coming weeks/months will hold many challenges for me and most especially for Courtney, but that doesn't mean we cannot make it through them with our sanity intact. At least i hope we can. 

I got to spend today with my Mom here helping me with Courtney. She is such a gift to me, I just cannot ever say enough wonderful things about my Mama. She would do this for any of us who needed her and right now it's my turn. I cannot imagine walking through this without her love and encouragement but most especially her prayers. I am so blessed. Courtney doubly so. 

Today we had to give Court a serious dose, or three, of Miralax in order to clear the pipes as we say. She had not had a bowel movement in almost seven days. There was no blockage thank goodness but it's not good at all that she was struggling with this. So we started mid-morning and by early evening we had excavated quite a bit. It's not pretty at all but boy is it necessary to keep things in balance. After that, I climbed into a hot tub with bubbles holding my sweet girl and we just hung out for a bit to allow her to relax a little so we could help her to poop. The warm water did it's job and we were successful. 

After that, I gave her a massage for about 30 minutes then bundled her up in my arms where she fell asleep after giving me my first smile in 48 hours. What a gift to me! I needed that smile so much. My Mom was with me, as was Jerry, the whole time fetching and helping as I needed. It was a group effort for sure. I am spoiled that I have a "group" I can count on to help with these intimate moments while protecting Miss Courtney's dignity. 

As I put her in bed tonight, I realized that this child knows nothing but love. There was no fear in her eyes or worry that something bad is happening. She wasn't always comfortable but in the end she trusted us to help make things better. That is such a sacred trust. When you cannot express yourself to tells someone that your tummy is hurting or they need help. She completely relies on her Dad and I to know what to do and when. 

No pressure Mama. No pressure. Ha!!

Her low grade fever broke tonight as well and I think it was because we were able to help get her emptied out. That will continue tomorrow as well. Yippee skippee for me. Thank goodness for Yankee Candles that is all I will say about that. 

I wanted to express our thanks and deep gratitude to all of you here, on the gram and FB, that prayed for me (and Courtney) last night and today. Know that I do not take those prayers for granted, Not at all. They are a gift I am so humbled to receive. 

So.very.humbled. 

Jerry and I were talking earlier tonight and he asked how I wanted to handle Thanksgiving. Miss Courtney cannot go anywhere right now, to many invariables and opportunities for disaster as far as catching anything. Plus she is too week to sit for very long so transporting her in her wheelchair is a problem. So we asked my Mom to come down and I will cook. Sort of. 

I work on about three to four hours of sleep a night these days due to Courtney's seizures, so a big to-do is so not going to happen as it has in the past. When I say cook, let me explain. This year I just don't have it in me. So, I "ordered" dinner from Whole Foods. We will use the three gift certificates we received during the love bomb (thank you, thank you, thank you) which will cover the cost of the turkey. I ordered just the turkey and three sides to keep the cost way down. Mom will bring the wine and the pie. It will be simple but delish and all I have to do is put the turkey in the oven and heat the sides. No chopping or stuffing or anything. We are even using paper plates. 

We have each other and so much to be grateful for. Our Courtney is still with us. Nothing can take away our joy at that fact, no matter how challenging things get. 

Thank you Lord for that gift. Jerry is still seeking a permanent position and will have his last day on Dec. 1 if something doesn't happen before then. We are both feeling the tremendous pressure of counting our pennies and being extremely careful with our limited resources. The thought of Jerry being without work (therefore no medical insurance) as we continue this process with Courtney makes me want to be physically ill, but I know that won't help anyone. So we press on. 

During the love bombs, Jerry and I were gifted, as well as our daughter. I have used a the two gift certificates to purchase a few new pieces of clothing for winter for myself since I have gained a bit of weight and things were not fitting. Dieting right now is so not happening. I also used the LLBean GC to purchase Miss Courtney a new soft down blanket that I know we will use when she has gone to God. She has plenty of warm pj's, sweaters, etc. to get through the coming months in comfort. Thank you once more for your generous gifts. So grateful. 

I cannot wrap my head around Christmas yet. I cannot. Miss Courtney loves the lights on the tree so I know we will have a very bright tree this year if she is still with us. I need to purchase some new colored lights for the tree, but I will wait for the sales next week to make the most of our limited budget. Other than that all I could think of is "What does Santa bring to someone who is dying?" When you know that answer let me know. Because I've got nothing.

That's Tuesday...now to try and sleep before Miss Courtney starts her rock 'n roll party around 3 a.m. 

Blessings and Love my friends from our house to yours and thank you for loving/praying us through this. 


           "We humbly thank you for any help paying off Courtney's extensive medical bills 
and taking care of the cost of the remainder of her final arrangements**
We Love the Lenaburgs - Team Courtney Fundraiser

PayPal
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