Thursday, August 21, 2014

flawed...

open eyes are not required to smile...

Thank you all for your kind words and prayers on yesterdays post. I wish I could respond to each of you personally but my online time is limited these days. I just wanted you to know that I read every email, every comment. Courtney and I are so blessed to be cared for and lifted up by so many. Truly we are.

Last night I hit my "wall" as it were. There was the 1 a.m. ugly cry with me, a box of kleenex and God. There was lamenting and wailing and hiccuping. When a mothers heart is breaking, nothing helps but the peace and consolation of Our Lord and a bucket of ice cream. At least not in my world. 

This morning I woke up understanding that this walk of ours will not be an easy one. Not for Courtney and not for me or Jerry or Jonathan. I know families have broken apart when one is lost and I understand that as we begin this path, communication between the three of us is so very important. No ones feelings are unimportant or to be put aside. Everything needs to be up front and dealt with as it comes. 

Jonathan and Jerry are NOT hospital people. They pace, they worry, they scrunch their faces and do not smile...for days and days. They are fixers these two men of mine. They can't fix this and it's taking it's toll on both of them. 

Jonathan had a great line the other day. We were talking about death and dying, particularly Courtney's death. He said "You know Mom, when Courtney dies and goes straight into Jesus's arms she is going to be so happy. She is going to be whole and free from pain and fear. She is going to dance and run and be totally blissed out. But I have to tell you, death is damned inconvenient for the rest of us. This is going to suck being left behind.

He is blunt like his father. He gets right to the point, no matter how difficult the topic. 


One of Miss Courtney's birthday gifts. 

I laughed and I laughed hard. He laughed. I hugged him hard.

Yes, my son. Death is damned inconvenient and if/when this does happen, when our girl goes to God, it will suck noodles being left behind. It will hurt to let her go like nothing has ever hurt before. But it is not something we can escape. It is part of life, the hardest part for sure.

Everyone keeps telling me how strong I am. I'm not y'all. I am tired and weary and ready for this to be done. I am not a saint. Don't put me on that pedestal y'all. If you do I will just fall on my ass and disappoint you in time. I am a Mama who has loves and cares for her children as best I can, just like you. I am as strong as I need to be to survive any given moment/situation. That strength comes from one place. God and God alone. 

I make mistakes every single day. I eat to much sugar, I curse like a sailor, I yell when I am frustrated, I hate to sweat/exercise and household chores are my kryptonite. I avoid them at all costs. I cry at Hallmark commercials and love to hold new babies. I am a sister to seven and my laugh is in no way feminine. There are nights that I can't sleep as my mind goes through every single possible scenario of Courtney's final moments here with us.   

I am just me. Human and flawed. Very flawed. 

I am Jerry's wife and Jonathan and Courtney's Mama. I am the daughter of a King and I know that He loves me without fail. No matter my sin or failings. I cling to that grace daily.

So as we go down this road with our Courtney, know that your prayers mean everything. Know that I am not always happy or funny or sad. I can be all three of those things in an hour. 

I am me and you are you. I have my path you have yours. No better or worse, just different. So how about we pray for each other and do our best. When we fall, lets lift one another up in love not judgement. It's what Jesus would want. 

Wednesday, August 20, 2014

a delicate balance...


My girl is home. I thought that would make things easier. It hasn't. These new seizures still come with great frequency even though we are slowly upping her medication.

The last thing any parent wants to hear is "There is nothing more I can offer you. We have done all we can." I have heard it way too many times in my daughters lifetime and I will admit that this time it really has hit me square in the heart.

When we were inpatient earlier this week, we saw lots of med students again and residents and attendings both in Peds and Nuero. I know we have a rather unique story to tell and I know it is my job to tell it. This is what Court does. She shows people that their is a person inside her skinny little self that deserves to be loved and respected.

But when you make a six foot four male physician cry and tell me what a good mother I am and that the only reason our daughter is even alive is because we have cared for her so well, I really can't take anymore.

Really, I am done.

I know it's selfish. I know it's breaking the whole "share Courtney's story and change how people look at the disabled" life rule, but you know what...this mother is hurting right now. This mother is scared right now. This mother just wants to curl up with her baby girl and protect her form all the suffering she knows will come.

This mother is tired of all the ER visits, hospital stays and med changes. This mother is tired of all the medical bills and financial distress that is making her older by the second. This mother is tired of adult diapers and nasty laundry. This mother is tired of worrying about her hubby being laid off and being without a paycheck.

This mother is just plain tired and I don't see any breaks in the near future.

For the first time in a long time I thought about life without Courtney today. It was pure hell. I do not know who I am without her. We have been a team for so long. I know when she's going to have a good day or a bad one from the first five minutes she's awake. I can get her meds in the right amounts in the dark. I know when she is hungry without her saying a word. I know when she wants to lie down or sit up.

I know her better than I know me. What the hell am I going to do without her? I know I shouldn't worry about it. The grace will be given when needed. God is in control here not me.

Not me at all.

Someone asked me how I was doing with all this. Not well I have to say. I am not in the mood to blow sunshine and rainbows up anyone's patoot. This is hard and I am sad that we have been asked to walk this road. I don't want to. I really don't. But then again, who does?

Yes, I still believe that God has my Courtney's and my best interest at heart.

Yes, I understand that God is asking us to trust in a brand new deeper way.

Yes, my knees are battered and bruised by the amount of up and down I have done praying for some clarity and a few answers.

No, I am not angry with God. I don't have time. He knows my hearts desire. No need to waste the emotional energy on anger. It won't change anything. All it will do is drain what little joy I can muster these days and that is not acceptable at all.

My daughter deserves more from me. She will get more from me.

So we will take this one day at a time. God has the timeline, I do not.

Just another day NOT in paradise...to God be the Glory now and forever...

Tuesday, August 19, 2014

something new...yippee!

1 p.m. Update - Tuesday, August 19

Here we go my friends...after 19 hours of seizing yesterday our girl is finally sleeping nicely.

 The type of seizures they saw are totally new for her. Totally freaking new as in she has never had them before in 22 years of seizing!!! Holy Buckets!!

Our medical picture just got more complicated. 

Yeah Team Courtney!

 We are now making changes to her seizure medications and will be headed home in a few more hours. We are still on schedule for next Tuesday's Nuerosurgery to replace her VNS battery. We will be inpatient for the night then as well. This keeps getting better and better. Where are the locusts and the frogs??

They will be releasing us in a few hours and we will be home by dinner tonight. I cannot wait to sleep in my own bed again. Oh the bliss that will be!!

In conclusion, for her 22nd Birthday Courtney's gift to her Mama was a new type of seizure, one never seen on her EEG before yesterday. That's a "first" I could have done without. 

God help us all.  





too many tuesday mornings like this...

Here is a quick update on my sweet Courtney...9:30 a.m. on Tuesday, August 19, 2014...Happy Anniversary Grandma and Grandpa Lenaburg!!



My view this bright and shiny Tuesday morning. The seizures finally stopped around 3 a.m. ish and she finally fell into a deep sleep. We are waiting for Neuro to decide the next step. I wait upon the arrival of some seriously strong coffee which should arrive on about three hours accompanied by a handsome balding man known as My Beloved or Court's Daddy. I got a record breaking two hours Of sleep last night. Not bad for a hospital stay. Must be why I feel like skipping down the hallway throwing kisses and rainbows to everyone we meet...or maybe I am just delusional. I will go with the latter. Help.me.now. #courtneysworld #specialneedskid #seizuressuck #ihatehospitals #ilovemygirl #needcoffeestat



Monday, August 18, 2014

seizures...can't live with them...can't seem to make them go away...


Greetings friends from Building CCC at GUH in DC. Oh what a day we have had my Courtney and I. What.a.day. Starting with a full fledged grand-mal seizure with all the bells and whistles at 3 a.m. this morning, the birthday girl decided that today would be the day to make her Mom and Dad sweat a little. 

After our little seizure party, everyone went back to bed and we were not so happy to hear the alarm at 6:30 a.m. Nonetheless, we got up and went to give Miss Courtney her tube feeding and meds, discovering her feeling a bit warm. I stripped her down to her skivies and waited 30 minutes thinking that maybe I had dressed her too warmly.

Alas, I had not. She had a fever of 103.5 which is no good in this Mama's play book. This child never has a fever even with ear infections, UTI's and pneumonia. I knew something was off. As I got her ready for her day she began to have these little episodes, like she was starting into a grand-mal seizure with hands clenched, shoulders going up, and arms and legs shaking. But 15-30 second later she would completely relax and not "finish" going into the grand-mal. 

After and hour of these little diddys, I administered an extra dose of one of her seizure meds which is the first step in our protocol and watched her for another hour. These little episodes did not stop. 

So off to the ER we went, not really wanting to but knowing something different was happening out of my realm of comfort. Not exactly where I wanted to spend Miss Courtney's birthday. I mean, doesn't ER mean "Entertaining Revelry". Hey, let's go partay down at the ER where the wait is long and the smiles are few. Oh yeah baby...let's do this thing.


So we did. 

My Courtney and I spent NINE hours in the Entertaining Revelry room undergoing stick after stick, chest X-ray's, blood cultures, catheters and more fun that you could poke a stick at. At one point my mother was reading Courtney People Magazine so she would stay calm. Of course hearing my mothers comments on said celebrities was worth every second. 

All while listening to the "symphony of the ER", such as the lady next door describe how she "fell" into the door jam for the third time this month (I'll take domestic abuse for $100, Alex) or the woman on the other side of us wretch for hours. I do mean hours. (I'll take the plague for $200 Alex). We had a prisoner escorted by two fully armed SWAT dudes,  with a stab wound, a woman in the final stages of labor who was very, very loudly proclaiming her need to push, followed shortly by the lusty cry of a new born (I'll take New Life for the win, Alex). 

As a writer it was a gold mine of human emotion and story telling potential, especially a later admission who just kept telling the Docs they were full of "horse sh@$".

Awe.some.


But as a mother, it was a little too much. Especially when we finally got a bed upstairs to start her 24 hour EEG and they made us wait in the hallway of the ER while the transport lady was on her way down to get us. We witnessed some dude pee in a cup behind a sheet. Thank you Jesus, Courtney is blind. How I wish I was to. I will never get those five minutes back. Yikes. 

Needless to say, I would rather arrive at the ER at 3 a.m. that at 8 a.m. because all the crazy people go home at night and leave the sane ones to rule the world. 

So not how I envisioned celebrating my daughter's 22nd birthday. I thought we would have a few visitors this morning, drink coffee and eat chocolate mousse cake. I thought we would grill a little dinner and enjoy a beer on the front porch and have a little ice cream. 

No, apparently Courtney would prefer to wear her "I am a Drunk Gnome Hat" and have a party in Room 5304 for the remainder of the night. Yes, she really does look like a drunken gnome and no, it's not her best look. 

As I sit here once more by her bedside, I have no idea what is going to happen. She is still having episodes and the Docs have just confirmed they are in fact seizures. We wait to see what the next move is. Probably a lumbar puncture to rule out Encephalitis which is a virus of the brain. Unfortunately she has had this before which makes it's recurrence more likely. We will just have to wait and see what the remainder of the night brings.


That's where we are my friends. I am tired. I can only imagine how exhausted Miss Courtney is. As I told my friend K in an email earlier tonight:

"Things here are quiet on the floor...I wish I could sleep but right now I want to cry and I really can't. It freaks the nurses out too much and I need them to be focusing on Courtney and not me. I am tired. I am weary and I want to take my girl and go home." 

Maybe I will eventually get that cry but for now I am pushing a little black button every time Courtney seizes. So far I counted 20 times in 42 minutes. This is crazy. 

The DNI/DNR is in effect and the staff has been very respectful of that. They are doing everything they can to make her comfortable and try to figure out what is wrong. I have no idea how this will affect her scheduled neurosurgery next week. That's more than I can handle at the moment. 

As you all know Jerry will be laid off Sept. 1. so we really need to get this surgery done so it is covered by insurance. Also, we really need that wheelchair seat to be delivered by then so we don't take a hit on that as well. 

Did reading that stress you out a bit? Yep...me too. 

So we pray, we wait, we watch as see what God allows this night. Happy 22nd Birthday my sweet little girl. You are a warrior princess of EPIC proportions. Now you and God need to decide what's gonna happen next. 


Stay tuned friends. I suspect it will be take your breath away. It usually does. 

In the mean time, me and my girl will be hanging here for a bit. Courtney wearing her new kick-ass new pink princess PJ's curtesy of her Godmother, Aunty Sharon, and me searching to that elusive oatmeal chocolate chip cookie my mother left for me, but I suspect my husband absconded with.

Seizures are like husbands...can't live with them, can't make them go away and leave the cookies behind.  

Hrumph!

Blessings, 

prayers...


9:30 a.m. 
Need prayers Y'all. Headed into Georgetown with our birthday girl. She has been seizing for the last three hours and has a high fever. He'll of a way to spend her birthday! #courtneysworld #courtneylenaburgfanclub #sickone #seizuressuck #ihatehospitals #specialneedsparenting

Sunday, August 17, 2014

let's party...


Yesterday was amazing. Just amazing. 

Our back yard was decked out as never before, filled to the brim with cards, decorations and lots, and lots of peaple. Eighty or so to be exact. More people than we have ever had here at once. EVER!

I told Jerry that if I saw one drop of rain I was going to have a stroke right then and there!


Thankfully God took pity on me and gave us a spectacular day of sun and a light breeze and low humidity. It was a stunning day. I could not have asked for better. 


Miss Courtney was surrounded the entire day by people who love her something fierce. Her cousin talked with her, her aunt and uncles brought hugs and kisses, and YOU CRAZY AWEOME PEOPLE showered my girl with such incredible love through your pictures, posters, cards and crazy creativeness.  


There were flowers, both real and tissue paper ones. Hamburgers, hot dogs, cakes and cookies. Lots of side dishes to share brought by all who came. 

It was crazy awesome good. 


For the first time one over nine years ALL of my siblings were in the same place at the same time. We might have had a little fun with it. Maybe. The only person who could motivate ALL of my siblings to be on one place for more than five minutes was my father. Now that he is with God, my Courtney has taken over that roll. The force is strong with my girl and when she calls or is in trouble, they all come no matter what. 

It is the gift of a large family to be loved and challenged by so many. 


There are eight of us all born within ten years. This year my big brother turned 48 in May and my little sister will be 38 in November. We are loud and crazy and experts in everything. We will battle you to the death if we think we are right. The Irish/German combo creates quite the strong personality. We are all alike yet so very different. I love each of them and I don't know who I would be today without them. 


We were also able to get a photo of my girl with her Godparents, my brother Richard and my BFF from H.S./College, Sharon. It was a special day for sure. My Courtney even kept her head straight even if her eyes were closed. I am just so happy we got the shot. 


I have to give a HUGE shout out to the BEST blog readers on the planet for all the love that is still arriving via the US Postal service. Courtney's actual birthday is tomorrow and we cannot wait to spend the day celebrating the life of one so very special. 

I cannot end this post without another shout out or two. To my BFF Sharon O. You were such a godsend yesterday, I don't know what I would have done without you and your hubby Jeff. You both showed up and just made it happen. SO grateful my friend. So very grateful for you help AND for your love of Miss Courtney. She could not have a better Godmother. 

Also, I would be remiss without saying a HUGE thank you to my friend Andrea, who took all these beautiful photos so I could be fully present to my guest and family. 

I will be sharing more photos throughout the week. This party's just getting started. 

Blessings one and all, 

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