Wednesday, October 29, 2014

sacred space...

We have been blessed to have a few visitors this past week. These beautiful souls have traveled this road with us for many, many years and have been a part of Miss Courtney's daily world for over a decade. 

As we slowly and steadily move toward those final days and weeks of having our Courtney with us, it's been important to make sure to leave some sacred space for a little love and laughter for our girl with her special friends. 

The love shown our sweet girl overwhelms me on a daily basis. It is amazing watching her touch the hearts of so many, no matter their age or circumstance. 

They chat with her, make her laugh and don't get offended when she sleeps on them and snores in their ears. Life these days is hard for sure but boy the joy is abundant. 

God is good, ALL the 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


Tuesday, October 28, 2014

a marathoner I am not...

I know, it has been a week since I was here in this space. My apologies but we have had a hard few days here with Miss Courtney.

Seizures ALL day Sunday. Wrestles ALL day Monday. Seizures ALL day today.

She doesn't want you to hold her or touch her. She can't seem to find a comfy way to sleep. She seizes and then whimpers and then seizes again. We have given her rescue meds three times in two days and she has not slept since Monday morning.

She is plan worn out.

I am worner outer.

This is the hard part of letting her go. I cannot always comfort her. I have tried every trick in my vast arsenal of twenty-two years of being her Mama and I cannot fix this. It's killing me people. Slowly but surely, this is just taking me down.

My girl is such a fighter. I am so proud of her strength and her fortitude but we are reaching a place where her little body will not be able to fight much more. Her seizure meds have been increased and that is all that can be done to help ease her distress.

She started running a low grade fever this afternoon and I called the Doc. He walked me though all the steps of trying to figure out what could be wrong. Because of her frail state, going to the ER with all the illnesses that are floating around is just not an option right now. So we have a protocol in place and we will wait and see if this develops into anything and go from there.

I know I am to stand on faith that God has a plan for my girls Heaven Homecoming. I have no doubt that once she is there I will feel great joy that her race has been run with all the grace she could muster. But watching it happen is a whole other story.

This is the hard work of mothering and caregiving. Knowing that there is nothing you can do to bring comfort and relying completely on Our Father and his Blessed Mother to bring my girl home. The tears flow freely these days and I am not ashamed of them. I have loved this child with my whole being, as I love her brother. My heart expands each day, filled with more love and respect for this child who is carrying out God's plan for her life with incredible dignity.

I just want healing and peace for her. No more pain, no more fear.

That will only come when she is standing at the foot of the throne of Our Gracious God. So I cry, I pray, I hold her when she lets me, I sing to her, I read to her, I cry some more, I pray over her, I pray for her, I pray for others. I do everything I can with what little energy I have and trust that God will take care of the rest.

So please keep praying for our girl. Pray that she has a peaceful death whenever God is ready for her to come home to Him. Pray that I am able to sleep and not worry. Pray that when I am filled with fear and doubt that I am not doing enough, that the devil takes a hike and leaves me in peace.

God is good ALL the time. We will praise Him in the rain and praise Him in the sunshine. We will run this race and stay on our very tired feet as long as the Lord deems it so.

Have I ever told you how much I hate long distance running? A marathoner I am not.

God help me and my sweet and always...

"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


Wednesday, October 22, 2014

good news and not so good news...

Jman and his Grandma L. 

Hey Everyone - 

We are still here, I promise. The last few days have been a bit crazy filled with visiting family, lots of seizures for Courtney and more naps for Mama. 

We enjoyed a weekend visit from Jerry's parents and sister. It was a lovely time. There were many rounds of Dominoes and Blitz played late into the night. Miss Courtney was loved on all weekend long and when they left on Monday morning, the final goodbyes were difficult. Even so, I am glad God allowed that time with them. It was a beautiful gift and one Jerry and I will always treasure. 

We have some good news to share. It looks like Jerry has been put on a short term project which means he will be employed until Dec. 1. His boss has been so good about working hard to find a place for Jerry to land within the company. He knows about Miss Courtney's situation and has been very sensitive to the fact that our time with her is short. It's not a permanent job fix but it does give us some breathing room for the next six weeks or so.

The Clan minus one...

God will figure out the rest. He has covered us up to this point and I have no doubt he will continue to do so. So keep those prayers coming my friends. There is a plan. We just need to the Good Lord to reveal it to us.

Now for the not so good news. Our girl is fighting hard to finish the job God sent here to do. She now weighs 72 pounds and having more breakthrough seizures each day. Some days are better than others. We spend most days snuggling together in our favorite chair in the living room as she sleeps on and off throughout the day. 

I cherish these hours with her. They remind me so much of when she was first born and diagnosed with seizures. We would rock for hours in the old wooden rocker my Grandparents gave me. I loved that chair. I think back on that time when I felt so powerless to change anything and was completely at a loss for how the care for my girl. 

Grandparents ROCK!!

How ironic that I am now in the same place at the end of her life as I was at the beginning, except that now I know a peace that I didn't then. I love this child with a deep abiding love that has grown exponentially over the years. I love her brother with that same deep love. It's what happens to us as mothers. The fact that your heart can grow to contain enough love for more than one person is a true gift from God. 

I don't know what the end will look like for our sweet Courtney. It is my prayer that she she just falls asleep in the Blessed Mothers arms and flies straight to heaven. I think she has more than earned that peaceful exit. 

I have moments of deep grief where I pour my heart out to God in the midst of tears that don't want to stop. Then I have times of peace and quiet in my heart and feel nothing but joy for the fact that soon, my daughter will no longer suffer and be locked away in a body that will not do what she wants it to do. 

It's a crazy place to be for sure, but then this is me we are talking about, so a little crazy is always present. 


The funeral home is taken care of and yesterday I went with my BFF and Miss E to pick out a few funeral flower arrangements for the altar and such. The last things on our "to do" list involves putting together photos for the wake and reception and last, choosing a head stone. I think we may wait on the headstone though. It's a bit much for me to handle right now and I want to make the right choices for Courtney.

For today, we wait and keep vigil with our girl knowing that God is not done writing her story. He has chosen the time and the day that our sweet girl will go home to Him, her beloved. 

Until then we love...deeply...with grace...and abundant mercy...knowing that one day, our arms will be empty. 


"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


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


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. 

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. 

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. 

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 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


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 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 "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.

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


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

Related Posts with Thumbnails