.5 pounds…

ByMary Lenaburg

So my sweet girl was weighed this morning and she gained .5 pounds. YES!!


I know. Silly to be so excited but you know, I will take it my friends. I will place that .5 pounds in the win column for the day.


That’s about the only thing in the win column today. I spent the morning on the phone trying to get several answers in regards to hospice, hospital bills and a med change. That’s three different calls and three very frustrating situations at that. Oh SweetMolly, I woke up on the wrong side of the bed to start with and then to have to go through all that only to be told they would a. call me back, b. call me back and c. had no idea how to help me but call back tomorrow and talk with the head manager dude.


Aaaaahhhhhhh!! Calgon take me away…far, far, far away. Save me from these mo-rons!


So I will take those .5 pounds and run with it.


Joining the nightmare paperwork ordeal in the total life sucking loser column is the fact that since Miss Courtney has lost so much weight, none of her clothes (save her birthday PJ’s) fit her.


Aeeeecheewahwah…what next universe?? What next?


So my friends, since I have always been very honest here in this space, I am going to share a small piece of my most recent confused and frustrated mental conversation with you. It sounded a little like this:


I have tried on half her closet and everything looks like it was made for her gigantor sister. What the heck do I do now? She has been given six to nine months here on this earth. Do I buy her new clothing? Do I make her new clothing? Do I go to the thrift store? How many outfits do I get? How long does she have here with us? She won’t wear jeans anymore. She fusses at “stiff” fabrics. So I need soft and warm things since we are heading into Fall and Winter? We have no savings to do this with. Jerry will be laid off on Friday. What the heck am I supposed to do? I seriously do not need this in my world right now. She wears a child size 14-16 or a woman’s petite small. Aaaaaahhhhh! She can’t live in three pairs of PJ’s for the next nine months!! 


Now, before you judge me, please know that I know this whole mental conversation is silly and stupid. I mean they are just clothes and I have enough fabric to open up my own JoAnn store, so I will get to work on a few things to make it work. That is after I get some sleep.


Me + fabric + scissors + no sleep = disaster. So I will get to work in the coming week.


I don’t know how to do this whole hospice, watch your daughter make her final journey home thing. I really don’t. I mean who looses sleep over the fact that they need to get a smaller size in clothing?? This is NOT something to lose sleep over people. Ugh!!


I need a book, a manual to make my way through this. I had to go buy a mortar and pestle today, so I could crush her seizure meds to give them to her through her g-tube. Why not get the meds formulated for her g-tube? Well we already paid for the pills weeks ago before she could no longer take her meds or anything else by mouth. You see my quandary? Either buy a $35 piece of kitchen equipment or spend hundreds in replacing all her seizure meds. So grind up the meds we do my friend and keep moving forward.


I also wonder how much blogging I should be doing. I mean all I do is bitch, whine, moan and complain about hard things are or I cry through my words about how much I love Courtney and don’t want anything to change.


Who wants to read that e.v.e.r.y.d.a.y?


Not me. You?


What say you the most awesome, sweet, badass blog readers on the planet?? You cool with it or no mas…comment and I will take an unofficial poll.


That’s all I got.


Complain, whine, moan and then have irrational thoughts about a shopping spree that cannot be. Oh yeah baby…this life…it be ‘da bomb!


Until next time…

26 Comments

  1. Keep it real. If this is your real, so be it. We want to go with you on this journey so we can pray for the specific intentions as they come up. Keep it real.

  2. You are WRITING the manual, Mary, for so many others. Know it's hard from your side, but I know so many others take their strength and knowledge from you. Glad to hear she's put on half a pound. Good luck with all the tedious day-to-day stuff. You need to vent; this is the place to do it. Don't worry about us…we have the option of skimming it if we need to. YOU, however, don't have that luxury. {{hugs}}

  3. Hi Mary, I look forward to hearing how your family is doing everyday. Both the good and the bad. I think that it is sometimes helpful to write – something, anything – in order to process your thoughts and feelings. And you have a lot to process!! So, go ahead and keep on writing as much and as often as it works for you. I, and many others I suspect, will be here to listen. Know that even though I rarely write comments, I read every evening and pray for your family often. God Bless.

  6. Keep talking lady! I want to be there for you in prayer, and I too am dancing for .5 pounds! I was so excited to see her yesterday. I agree YOU are writing the manual, that is the trick!

    As to the clothes, could you take some in for her? I am not a 14-16 but could you go to the thrift store? Most of my clothing comes from there or ebay, gulp… I said that publicly. I rarely buy anything new. My 11 daughter actually was excited for me when she realized I bought a new pair of shoes a week ago.

    Keep it real dear, real for me looks like a busted computer, and a goner transmission. But in life's lottery I've won, I have my fiance, a job, great kids, and my family and I have health! Dear, the end answer is WHINE!! What you are doing IS tough!

    Love and {{{HUGS}}} to you and Miss Courtney! Michelle.

  8. Please keep writing, Mary. It is a privilege to share this journey with you. And you know what, I think I'd be just as frustrated about all those situations…clothes, phone calls, meds, etc. My dd wears those sizes, and since going away to college, has a closet full of clothes she's not wearing. She will be home this weekend–we'll see if we can find some to send you. Prayers that today is a better day!

  9. I know I'm not alone when I wake up at night with a child and think about/pray for Courtney and Mary,, so don't stop blogging. We wouldn't click over if we didn't want to know. I think an Amazon wish list is a great idea.

  10. Please keep writing. Write about it all! I woke up at 1:40 two nights ago and an image of Courtney in a navy shirt with white polka dots popped into my head. I immediately started praying and prayed for her until I was able to fall back to sleep. I anxiously checked your blog when I got up the next morning and was thankful that there was nothing posted because I knew that if something had happened (good, bad or otherwise) you would have posted. I said a prayer of thanks and waited patiently for your next post, instagram, facebook update. So many people depend on these posts to know how to pray for you and how to help you. And don't worry about whining, bitching, moaning, complaining….sometimes you've got to get it out to move past it!

  11. In agreement w/ the above comments…keep the writing coming! It's therapeutic for you & gives your readers a chance to pray, support, & uplift you. We are all sharing this journey w/ you. My children are always asking how Courtney is doing. All of you are constantly in our thoughts & prayers! I wish I lived closer. Wrap your arms around yourself, give yourself a big hug from me, then go & give that sweet girl a big hug from me, too! Much love!

  12. You keep on writing! We want and need to read it all and Miss Courtney is improving everyone's prayer life — that's for sure!!

    The Amazon Wish List is a great idea and will also provide a little fun distraction for you (maybe?).

    Praying for all of you.

  13. I think your writing about your experiences in this, good, bad, and ugly, will be helpful and reassuring to others who may go through a similar situation. I know sometimes we just want reassurance that what we are feeling and thinking is normal and to find somebody else who has written it all out may be a true blessing to somebody else. And if it helps you to get it out and to document what you are going through, then that is important for you. I love to see your updates on Courtney and to be able to pray for your family. I think the worries about things like clothing not fitting are totally valid, because it is a change and every small change is part of the larger picture and adds to the challenges. Please do set up an Amazon wish list of clothing for Courtney – I would absolutely love to be able to help you out in that small way! Please keep writing as long as it is possible and helpful for you, but also don't let it become burdensome… I dont think anyone has any expectations to put on you; we just love to hear about your beautiful daughter and how your family lives for God daily!

  14. Mary, today my husband took me to Walsingham and I prayed at Our Lady's shine for Miss Courtney and you and the family. It is not much but we left a candle burning there for you and offered our masses for your intentions x

  16. one of the reasons that i read your blog is that it is so real — you say the things that you need to get out there, I think it's therapeutic for you and benefits your family — because it's real and an opportunity to sharing things you want to say to your readers that have listening ears and prayer filled hearts, and sometimes people that are sharing the situation with you (like your husband and son) don't understand why it's a big deal to you and this can be more frustrating. I read this post today and thought of when my mother was sick and having nearly the same concerns about clothing and making her comfortable — my step father didn't get it when i tried talking to him about it but people outside of the situation did and right now you need that extra support.

  17. Happy dance for the half pound! Hugs to you for the rest of it. Keep writing. It helps me to put my own junk in perspective.
    May the Holy Family keep you in prayer!

  18. Would love to keep reading – the good and the bad – if you want to keep writing. Do what is best for your heart and your family right now. Either way, I am so thankful to be able to pray for you, Courtney, and your family 🙂

  21. Mary, you do what you have to do, that's part of why we're here. To listen, to nod, to console and to duck if you throw something at us. Take that .5 lb and dance with it – toss it up in the air and twirl then catch it in your hands and sing, at the top of your voice – sing loud, sing clear, let the angels hear you – then lay with her and let her know that she gave you a gift, a little miracle from heaven. Write what you have to, good real friends don't care, for they know you are frustrated, annoyed and angry, not at them but at what surrounds your daughter – if you don't advocate for her, who will? Trust in God and all His angels and saints, His Son and His Son's Mother. How do you think Mary felt when they were killing her child? She was also frustrated and annoyed and angry – but not at her Son. Never at the miracle that God has given you, never.

  22. Keep it real!! If you don't tell us we are nt certain what to pray for… Is there no way you ca dart her shirts and take up her pants…. Listen you are worried about a lot of the things hospice will help you with!!! It's their job!!! You have enough to worry about and your time should be spent doing what you do for your girl!!! Praying for you!!! May Our Lady keep you both in the palm of her hand!! No problem… Whine on … We're listening to yr heart!!!

  23. Mary, I want to read it e.v.e.r.y.d.a.y!! So pleased about the weight gain, keep loving that girl! My six and ten year olds remind me that we are praying for Courtney when we pray for those who are sick, they are very concerned to hear how she is getting on. Love to you all xxxx

  24. And thanks so much for posting the Amazon wish list. I have been wanting to help in a practical way for some time, but being in the UK it is difficult, using Amazon is a great way to help and it is a privilege to help a sister or brother in Christ.

  25. We all have bad days–you just remind us that we aren't alone in our bad days! For that, friend, it is all worth it; knowing that I am not alone in my tired, frustrated thoughts because you too sometimes just want to whine!!!!

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