Wednesday, December 17, 2014

whoops...

How I love computers. 

Ummmm...not so much...

This morning I was working on the post to be put up when Courtney passed away, trying to take the time to make sure I said what I needed to. 

It accidentally posted.

ARE.YOU.KIDDING.ME. 


Of course this kind of thing would happen to me!!! Sweet Molly!! Give to me very large break, oh great big universe!!


I crashed the internet for 30 seconds. 

Courtney is still with us fighting hard. As of 5:40 p.m. Wednesday, December 17, 2014 our daughter is still alive. She is calm and happy,but very, very weak. I told her what happened and she smiled as if to say "Not gone yet Mama. Still got some work to do". 

We continue to wait and hope for a peaceful passing. God's will be done. 

Tuesday, December 16, 2014

almost home...


Your outpouring of love and prayers for our Courtney have been overwhelming, so I decided to break cyber silence and let you know where we were. She is such a fighter, I have a feeling she will not let go quickly. 

Tonight we bathed her for the last time and then she received last rights and general absolution from Fr. B. 

She is in no pain. 

We wait in vigil for Our Lord to bring her home. 

Monday, December 15, 2014

letting go...


Miss Courtney's time this side of heaven can be counted in days now. She has stopped accepting her g-tube formula and has not peed in almost 23 hours, all signs of the final days. This will be my last update until she is in God's arms. Please pray for peace and calm as we let our daughter go. ‪

Friday, December 12, 2014

seriously Lord...no more...

5:40 p.m. EST - 
Need a few prayers y'all. When it rains it flippin pours. Our heat is out. Have put in an emergency service call. Don't know how much more I can take.

7:55 p.m. EST -
So the mother board in the heater is dead. We won't have the part for another 3-4 days. Thank you God for space heaters on sale at Walmart and neighbors who come to the rescue. 

On top of all of this craziness, Miss Courtney is now dealing with reflux and is not really enjoying her feeding time. We were told to watch for this and here it is. We have done some troubleshooting with Doctor friends and hopefully we have come up with a plan to help her be comfortable. 

Then there is Jerry's job situation. So many interviews and nada, nothing, zero, zilch. He is frustrated and discouraged. I am frustrated and discouraged. Now we are cold to boot. 

A friend said that the devil hates it that a new saint is soon to be in heaven which is why we are undergoing so many trials right now. If that's the case the GET BEHIND ME SATAN!! I do not have time, energy or the emotional bank to deal with this s@#$!! 

I need a stiff drink and a winning lottery ticket. GAH!!

Wednesday, December 10, 2014

time is a gift...

Today...

"He gives strength to the weary, he strengthens the powerless. Youths grow tired and weary, the young stumble and fall, but those who hope in Yahweh will regain their strength, they will sprout wings like eagles, though they run they will not grow weary, though they walk they will never tire." 
Isaiah 40: 29-31

Todays readings spoke directly to me and where we are today with Courtney. HOPE gives strength to the weary. Our daughter is growing weary, very weary. 

She is having a harder time taking her tube feedings and digesting what is given. Her poor little tummy is just a mess. We have troubleshooted with the feeding team and have done what we could to adjust to her current needs. They seem to change by the day. 

She can no longer sit on her own and is having a hard time holding her head up without support. She is more comfortable in bed than in any other position for the majority of her day. She still smiles and snuggles into my arms. I am so very grateful for that. I know that I will hold those precious memories in my heart for decades to come. When Daddy gives her kisses she still giggles. Such a gift to us as her body slowly begins to shut down. 

I am not sure how much time we have, maybe a day, days or a week, possibly two at the most. Only God knows. She has once more surprised her Doctors who did not expect her to still be with us given her seizures and difficulty with feeding. But then that's what our Courtney has always done. She perseveres and pushes through the most difficult situations with a smile and a princess attitude to boot. 

Unfortunately with her weight loss, her liver and kidney issues and the severity of her seizures, unless God intends to grant us a miracle of stupendous ridiculously awesome proportions, our girls full healing will only come when she enters heavens gates and rushes into her Beloveds arms.  

When I spoke to the Doc yesterday he told me what to watch for and how to proceed to make sure Court has all she needs to be comfortable and at peace for the remainder of her time this side of heaven. He felt her time here could be counted on one hand given her symptoms but then you can never count Miss Courtney out. She is a fighter. 

So we wait. We love. We pray. We sing. We hold her and then we do it all over again. It is a privilege to love her all the way to the finish line. This is one race I will never forget. Thank you Lord for this time. 

Tuesday, December 9, 2014

66.2 pounds...


My heart tells me (and the doctors as well) that our time together is growing shorter. Miss Courtney is now 66.2 pounds and falling. Her poor heart and lungs are beginning to strain. Her tummy too. 

Only God knows the time of her heaven homecoming for certain but sometimes He allows Our Lady to whisper into a Mothers heart to help prepare her. 

I feel so very close to Mother Mary right now. She walks this road with me. She has provided such peace of heart for me. 
This time with Courtney is such a gift. 

My heart overflows with the blessing of it, 

Mary




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Friday, December 5, 2014

when things get hard...prayers save the day...

Thanksgiving Day...2014...
If you follow me on instagram, twitter or facebeook, then you know last night was a real doozy with Miss Courtney. There were several grand-mal seizures including two where she stopped breathing for 32 and 47 seconds perspectively. 

They were hard to watch her go through. Watching her turn blue??? Really,really hard. The excitement lasted for three to four hours before her rescue meds kicked in and she stopped seizing and fell asleep. In the midst of it I reached out for prayer coverage on social media. As always you came to our rescue. 

Jerry and I were able to remain fairly calm throughout and focused on making sure Miss Courtney's airway was clear and she was as comfortable as she could be. It's hard for me to pray in the midst of these seizures. I am so focused on Court's physical needs that the spiritual ones flee my mind which is why I always reach out for support. 

Today has been pretty quiet. She was seizure free until around 6 p.m. this evening when she had a short but strong breakthrough. I suspect that there may be more activity tonight. The rescue meds are not as effective as they were four months ago. It's just so frustrating to know that we cannot ease her fear or pain. The more we medicated the worse it became so the Neuro team decided that it's best for her to ride the seizures out as best she can with the current med dosages.  

There was a moment last night, when Miss Courtney was in the throws of her seizures, in my arms, her body arching and shaking, making choking noises, holding her breath and turning blue that I placed my hand on her chest and looked up at the Crucifix on the wall. In that moment, I just begged God to take her. No more seizures, no more fear, no more pain or discomfort for my Courtney. I begged Him to just let this all stop and to bring her straight to Him. Jerry was holding her hands so she wouldn't hit herself in the flailing and arching as she went through the seizure. 

I looked at him and tears were slipping down his face. "It's not supposed to be this hard." He said quietly. In that moment, my heart broke for my sweet husband who can drive me batty with his glass half empty world view, but whose love for his little girl goes deep and is all encompassing. 

No, it's not supposed to be this hard, but for whatever reason God is allowing this hard season for our family and we both have to constantly remind each other that there will be a day when God will call Courtney home and our arms will be empty. So we press on, begging and pleading for a different outcome then accepting and releasing our own plans into His hands. Not easy to do. 

Not easy at all. 


These last 36 hours have brought life in our home to a complete standstill. Tomorrow is St. Nicholas Day, a day I have celebrated my whole life and is an important Feast Day for our family. For the first time there will be no cookies baked and no chocolate coins or oranges in the shoes. I have not gotten any ornaments for the kids to represent their year to put in said shoes. In 26 years this will be a first. It makes me sad, very sad. 

I know that in the end, it's not important in the big picture but it's just another sign that things around here will never be the same. Miss Courtney passed three months of the six months the Docs gave her this week. I don't know how much longer I can hold it all together watching and waiting for her time here to end, all while loving her as best as we can. I feel...I feel...oh who knows what the hell I feel these days. 

I do know that God knows, and in the end, that's all that matters. Thank you for walking with us and lifting us up in prayer. Just, thank you so very much...


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