Wednesday, October 1, 2014

snuggles given daily...


My sweet girl is now 79 pounds of love. She is sleeping about 12-15 hours a day. Not much energy for much but she is happy to snuggle with Mama for hours.

No complaints here.

Her skin is so thin it's like paper. We are massaging her twice a day with Udder Cream to make sure she doesn't have any issues when she seizes and her skin contracts.

She only goes #2 every five days or so and no matter how much Exlax or Myralax we give her I usually have to extract it. She is still going #1 several times a day and we are hydrating every few hours. Don't know how else to write that but there you go.

Her seizures come when they come, no rhyme, no reason. She turns white, then blue, then she takes a breath and all will be well. One of these days I know that may not be the case but for now it is what it is.

On the good side of things Jerry's job has been extended two more weeks. This is HUGE relief but we are still storming those gates for something permanent. He is working his tail off and I am so proud of him. I know God has a plan but boy howdy does He like to wait until the last minute.

We will be going over the funeral liturgy in the next few days and completing a few more details that need to be seen to for our Courtney. I do OK as long as I separate myself emotionally before discussing anything. There will be plenty of time for me to totally lose it. I prefer not to do that anywhere but in my own home. Once the faucet starts, it's not easy for me to stop it.

We have decided that for now, no more visitors but family. My Courtney uses everything she has to smile and be present for those who come and love on her but this Mama can't do it anymore.

When Miss Courtney is sleeping, this Mama sleeps. When she is up, I am up. Lately she really likes being awake from 3:30 a.m to 5:00 a.m. I rub her back, her feet, her tummy. I sing, she smiles. Then she goes back to sleep. It's a little more challenging for me to do the same, but I try.

Needless to say Miss Courtney's schedule has taken over the house which is just fine with me but makes it more challenging to schedule visitors. We so appreciate all those who have come by to spend time with our beautiful girl. Your hugs, smiles and words of encouragement mean so much to us. SO very much. However I think the time has come for us to close the doors and just be together as a family.
Jerry and I talked about it and have decided it's the right time.

Wow...that was hard to type but necessary.

This is where we are. There is no rule book for how things are to be done. Gosh, how I wish there was one. I like rules to follow. I really, really do. ALL I know to do is love my daughter with all I have. I have done it everyday for 22 years and I will do it for as long as God allows me to hold my girl in my arms. The day is coming when that will not be possible but I can't go there. I just can't.

Until then, LOVE and snuggles are what's on the daily plan. Thank you for your continued prayers and financial support. There are no words to relay how deeply our family has been touched. No words.

Blessings,

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


We Love the Lenaburgs - Team Courtney Fundraiser

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Tuesday, September 30, 2014

groundhog day...


I feel like I am living in that movie "Groundhog Day" with Bill Murray. Each day looks the same. Get up, make g-tube formula, give meds, give formula, change diaper, give formula, get Court cleaned up and dressed, give formula, get myself showered and dressed, give med, give formula, and so on...and so on...

This is what it's like with in home hospice. Same thing different day. I don't mind given that I know in the end my child will be laid in the arms of Christ and my arms will be forever empty. I have become slightly obsessed with holding Courtney as much as possible. She is not always a fan but thankfully she lets me do it anyway. 

I am a highly unmotivated housekeeper these days, which is saying something given my past uninspiring performance. Somedays we have visitors and others none. That's OK. I know that I will be closing those doors soon because it's getting harder for me to deal with the emotions and the physical strain of others sadness. I don't mean to sound ungrateful at all, but this is a hard thing, this letting go and saying goodbye. 

The hospital bills keep rolling in. There are still funeral details to take care of and pay for. Jerry still has no offer and his last day at work is still Oct. 3 unless he is extended again. I am trying not to freak out. I know that God has this situation fully in hand but golly that is one tall order for me these days. I want to be a strong woman of faith, be positive and joyful but there are times when I want to shout and scream and pout and stomp and just let it all go. 

Humanity is such a cross sometimes. So I pray, I cry on occasion, I hold my daughter, I laugh with my son, I crave everything pancake and waffle like, but so far have resisted death by powdered sugar. I decided today that I just want this done, then I felt like crap all afternoon for wishing a quicker ending for my daughter. 

There is no winning here. Courtney is still going to die. I am still going to crave all things WaffleHouse and bills will still need to be paid. That my friends is one crap pie. 

So until tomorrow when we get to do it all over again...know you are being prayed for and for heavens sake, keep me away from the breakfast buffet... 
 
** 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 27, 2014

determined...


This morning I ran away for a few hours. Jerry and I had signed up for the RiskJesus14 Conference here in our diocese several months ago, before Miss Courtney's health took a turn for the worse. I was looking forward to the day hearing some fabulous talks on the new evangelization happening within the church. It's an exciting time to be Catholic. Yes, there is persecution and difficulty but then there always has been. As one priest said "The church may be smaller but it is more dedicated and faithful because they truly believe in the magisterium, the tradition and the Eucharist." 

Amen and amen. It's not always an easy thing to be a woman of faith, a Catholic. To choose to follow rules and regs that have been set for 2,000 years. I have to admit for most of my young life I tried very hard to find my way around them, to justify the sin. Then I got married and all I wanted was to be the BEST wife for my husband. Once children came, my faith journey deepened still. 


Once Courtney was diagnosed with seizures and everything that went with them, my faith was tested for the first time in a very real way. As I write in My Story, it took seven years to decide that God knew what He was doing and the plan He set before us was one he chose just for us. It has taken another 15 years to come to this place where we are able to grasp the idea that our time with her is shorter than we thought and God will eventually choose to bring Courtney home to Him. 

As I sat through the talks this morning, there were a few things that struck me. First, we ALL have a story to tell. We ALL have a journey to take. We ALL have a choice to make every single day in how face the challenges that are placed in our path. We are not alone in questioning God and what is happening in our lives. He will reveal the purpose to the plan in His time and His alone. 

Second, if we must chose to keep our doors open, our hearts open and our ears ready to listen we can do the work that God has for us to do. Many people have thanked me for "sharing" Miss Courtney and our story. I always smile because in my mind and heart this is what my daughter is here to do. To touch peoples and show them that EVERY LIFE HAS PURPOSE. Every child deserves to be welcomed and celebrated no matter what their ability or disability may be. I am determined that my doors will be open to support my daughter and her mission as long as her health can handle these visits and times of prayer. It is my honor to do this for her.


Last, the support we have received blows me away. It has not taken away all our financial/practical concerns but it has lessened them dramatically. There is still much more for us to do to pay for the funeral and get out of debt but I know it will be possible. All things are possible with God. 

I know I have said "thank you" a million times before and I will continue to thank you and our Lord every day of my life that I have breath within me. To be loved and prayed for in such beautiful ways is astounding. It is not an easy thing for this stubborn, self sufficient Irish-German woman to swallow her massive amount of personal pride and say that help is needed. It is not easy for my husband or son to do the same. It is not easy to hear some say not so nice things about us or our family needing the help. 

Yes, that does happen and no, I am not angry about it. It hurts but I know that God knows our hearts and what we need to do, so I pray and offer my hurt for them and whatever is behind their need to hurt others. It's not something I do naturally but it is something I have learned to do over the years. People are people. We are all sinners and need redemption. I am at the front of the line my friends. Front.of.the.line. 

I know that one day God will allow an opportunity for us to pay all of this love forward in a pretty spectacular way. I am sure it is no surprise to you that I look forward to that day. For now I pray for each and every person who has reached out and made themselves known to us. I pray each and every day for those who wish to remain anonymous as well. It is my and my family's honor and a privilege to do so. 

Determined. That is my word for the week. Determined to be open and willing to do what God needs me to do for my daughter and for Him. 

Blessings,

** 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

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Friday, September 26, 2014

birthdays and funeral homes...


Yesterday I turned 47. 

Today I spent an hour at the funeral home to begin making arrangements for my daughters burial. 

I can't wait to see what happens tomorrow.

Maybe I will run away and become a circus clown because that's the craziest thing I can come up with right now and my life is filled with all kinds of crazy. 

Good crazy but still...wowza...

Yesterday it was wet and raining. Not a ray of sun to be seen. That didn't matter at all. The birthday love bombs of chocolate and coffee arrived via the UPS man or the mailman. Sweet friends from Kilmer Center, Miss Courtney's former school, came by to deliver a little extra love. They were followed by some old homschooling friends of mine who planted a birthday garden for me IN THE RAIN!!


Crazytown my friends. Who does that? Well, sweet awesome friends do. I also received a beautiful plant and cut flowers to help celebrate the day. I was so overwhelmed, I did not know what to do. I have never had a birthday like this one. Never. To be cared for and loved in such a gracious and grand fashion was awesome and so very, very special. I will never for get my 47th birthday. 

Never. 

Miss Courtney's love bombs We should be done now and I cannot say thank you enough. We have plenty of clothing and supplies for Miss Courtney. Our freezers are filled with wonderful food and we are so blessed. Jerry and I shake our heads in wonder at the Lord's provision during this time. It has been absolutely amazing. No words. So amazing. 


People are still asking how they can help. Well there are two ways. I will get to that in a moment. 

This morning Jerry and I faced a parent's nightmare. Meeting with a funeral home director about our daughter's services. First I want to say how lovely and incredibly helpful Miss Christine of Fairfax Memorial Home was in walking Jerry and I through it all. 

To say we were slightly overwhelmed would be an understatement. So.many.details. I was so grateful for the peace I had going in and so thankful that our dear friend Dcn. Silva came with us. I don't know what we would have done without him. DQ you saved the morning with your quick wit. 

The hardest moment for Jerry was when they showed us the concrete vault that Miss Court's casket will be in. It was so real in that moment. I looked at my husband who has loved this little girl from the moment we knew she existed and he had tears running down his face. 

No words friends. Just.no.words.

I rubbed his back and told him it would all be OK. My pragmatic blunt husband looked at me and said "No it won't. We still have to pay for all this." 


That's my Bear. I love him so much and he always calls a spade a spade. I laughed out loud. He was so right. All of this is just insane. I don't want to be at a funeral home figuring out what kind of vault we want or what kind of prayer card or program. 

I just want to go home and hold my daughter, watch her smile, maybe even get her to laugh. Instead my hands were shaking as I was flipping though the 100 page flower catalog. Too.many.choices. 

That was my very real moment. 

Sweet Mother I love flowers but I just could not do it. I could not choose what flowers to put on my daughter's casket. So we opted to wait to make those choices later. Don't even get me started on a grave stone. 

Can.not.do.it. 

So here is where we stand. We have started a "folder" at the funeral home making all our selections except for the flowers and headstone. The total cost of this shindig...drum roll please...$9000...and that's the frugal funeral with the casket already being provided. 

I know, I know I shouldn't be shocked but...well...I am. 

We have a $5000 KofC policy for her and Jerry has a policy through work. The kicker with that is, if he is laid off on Friday, (Oct. 3) that one will go away. Which means we will have to come up with the rest ourselves. Add in her medical debt and well, life's a party my friends and you can't take it with you. 

Since we don't have any $$ at the moment, we just had them take down ALL the details and when Miss Courtney makes her final exit we will go and take care of the bill. Death and taxes baby, can't avoid either of them. Wow!


Jerry came home and had a shot of vodka. I went and got my hair cut. Courtney laughed. Jonathan went to work. 

Life goes on. 

God has never let us down. His provision has been overwhelming and awesome for our girl from the very beginning. It hasn't been easy by any stretch of the imagination and has required much sacrifice. But this child has been such a miracle and to love her and care for her is an honor. We would do the same for our son. 

Speaking of which, he came to me this morning and mentioned that all he had in his almost 25 year old wardrobe were his work uniforms, jeans, golf shirts and a few button down plaid shirts. I just laughed. 

Have I mentioned how much this boy HATES to shop or where anything other than grey or navy blue?? Of course! So adding son's funeral clothes to the "to do" list. I see some serious fun in my future. Yay me!!

Woo.hoo.

47 is going to be an interesting year for sure and for certain. 

Blessings,  


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

We Love the Lenaburgs - Team Courtney Fundraiser

PayPal

Tuesday, September 23, 2014

a priest, a youth minister and a blog reader...

Father G and Miss Therese...

Once there was a priest, a youth minister and a blog reader who all loved and cared for our Courtney. They each reached out and asked to visit. Today was that day. 

So Miss Courtney put on a new outfit and Mama tortured her by putting her hair in a ponytail. Then they came to say hello. There was laughter and story telling, Miss Courtney smiled from time to time but slept as well. 

Then love bomb #3 arrived via the UPS man and these three beautiful people helped this Mama go through the boxes and put away Miss Courtney's clothing and supplies. They were amazed by the incredible generosity they witnessed. 


Some of the boxes had the names of the givers and some givers chose to remain annonoymous. ALL are appreciated and prayed for every single day by me and my girl. 

Throughout the opening and reading of well wishes and prayers, Miss Courtney just smiled and slept, woke up and laughed, then smiled and slept. She has been having a harder time sitting for long periods of time, so we got this mat from Costco a few weeks ago with memory foam. BEST $79 ever spent for this child. She loves it and she is not stuck in her bed all the time. This way she can be out in the living room where the action is. 

Miss Therese softly brushing Court's new jammies on her face
so she can feel them. 

Anything that we can do to help her be more a part of things I will do. Today showed me that I did the right thing with that purchase. It was so wonderful to see my girl being a part of the visit. She loved it when Miss Therese showed her the lovely jammies and warm sweaters that arrived just for her. 

Then Miss Kathryn, a beautiful new friend, blog reader and faithful prayer partner, got down on the ground to chat with Court about all the things that are important to 22 year old girls. She just quietly chatted as if they were best buddies sitting in their dorm rooms in college. I saw in that moment what could have been and realized that our reality is just as beautiful. What college student comes over to chat about fashion and music with a special needs kid who she has only seen through a computer screen? How awesome is God that He touched Kathryn's heart to come and spend time with our girl??

Miss Courtney didn't appreciate the sunshine today. LOL! That face.
So awesome. God is using this daughter of mine to speak His love language and it is amazing to see it play out. We now have a new friend who will continue to pray for our girl whether she is here or in heaven. It blows my mind to think of our daughter's reach without ever saying a word. 

Once all the excitement died down, we weighed Miss Courtney. She is down another pound. Not good but not unexpected. My heart tells me that October/November may be the time we see her go home to God, but then I am not God, just a Mama trying to get ready to have empty arms.

New jammies and fleece blanket makes for one happy girl...

We bathed our girl and put her in a pair of her new jammies. She was happy and comfy, warm and snug all because of YOU, your beautiful hearts and generous giving spirits my sweet readers. YOU have once again made our world a little happier, a little less stressed, a little warmer and way more full of love. 

Today was a really good day. It was filled with people who care deeply about our family, gifts of chocolate and coffee, homemade dinner and more chocolate. What more could this Mama ask for? 

Not a darn thing...


** 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 22, 2014

climbing that damn mountain...


I am tired today. 

Heck let's get real, I am tired everyday. 

Sleep comes in fits and starts. Between the stress and sorrow of Miss Courtney's situation to the onset of menopause and the constant barrage of hot flashes, I only get about 3-4 hours of sleep in any one stretch and that's on a good night. 

yeah...tired...

Jerry made the call today and scheduled an appointment at the funeral home for Friday. We will go sit down and walk through all that needs to be done. When he got home earlier this evening I asked him how he was doing with all this. His very honest response "I just called a funeral home for our daughter. Not my best day."

yeah...tired...

We were love bombed again today and it was so wonderful to be able to check things off the list we made of Miss Courtney's needs for her final months with us. We are so incredibly grateful for your help and support. This would be so much more difficult without it. SO much more difficult. There is still much to do to prepare it makes me break out into a cold sweat when I start thinking about it all. 

so...very...tired...

This is all so very wrong. As I was opening the boxes this morning and reading your sweet notes, I was struck by the irony of it all. Here I am opening gifts, sent from near and far, for my daughter. Not for her college graduation or her wedding, but because she is dying. For a moment I thought, maybe there were too many clothes. Would she even get to wear them all? 



That was all I needed for the dam to break. It breaks often these days. Kleenex and I are old buddies by now.  

This shouldn't be happening. We should be at PT, cheering Courtney on to take her first steps. We should be apple picking and making gallons of Courtney's favorite applesauce. We should be prepping for flannel sheet season and making sure there are plenty of storybooks in the basket from the library for story time. 

Instead, I have a new pill crusher for Miss Court's twice daily seizure med cocktail that she can no longer swallow by mouth. We have some beautiful pieces for clothing in children's size 14-16 instead of the women's size 6-8 which she was wearing one year ago. 

As I fold each piece, given in love, they look so small. Too small. It takes everything in me to be excited about each gift. I don't want to be excited about why the gifts were given, no matter how grateful I am for the generosity of the giver.

My daughter is slowly slipping away from us. She smiles less and less each day. It's been several days since I have heard her laugh. The seizures come and take a little more of our Courtney with them when they finally stop. 

just...too...much...sad...

I had the opportunity to speak to another Mama today who lost her special needs child several years ago to a seizure. She shared the ups and the downs that she experienced when one moment her child was here and the next not. She didn't have to watch her child slip away. He was just gone in a moment. She said she didn't know which was worse. 

I said they both are equally horrible because the outcome is the same. Our children are gone and we don't know why God  chose to take them. I am so glad I had that hour with this beautiful Mama to know that one day things will be OK. The hole in your heart never goes away but you learn to live with the pain. 



I realized that in time I will become a member of a very special club. The "My Child Died" club. I don't want to be a member but then I look up at the Cross and I know there is another member who didn't want it either but she took each step with her Son toward his impending crucifixion with grace and a steadfast faith that something better was coming. It did not stop her heart from breaking but she walked it anyway out of obedience. 

I am named after the Blessed Mother and her cousin Elizabeth. I have never felt the burden of that name more than I do these days. 

Yes...I am tired.

Yes...I am heartbroken. 

Yes...I would give my own life to make it not so. 

No...I will not give up. I will not stop loving my daughter, even after she has taken her last breath. She is and always will be the very best parts of me, as is her brother. 

I will do my ever loving best to emulate my namesake and climb this mountain with as much strength I can muster. I know the view will be worth it. 

Please God, let it be so...


** 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

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

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