Tuesday, April 15, 2014

hope in an elevator...

tube feeding 101

It rained. 

Then there was hail. 

Then more rain. 

Yes, Easter is in five days. 

This is crazy insane weather. 

Ah well. We are a crazy insane family so I guess it fits. 

Today, after Miss Courtney got her first tube feeding at  o'dark thirty a.m. I started my annual spring cleaning. I began in the kitchen which is a major hub in our home. My dry goods pantry was a mess. I emptied it out and then decided to move things around, to make it more user friendly. 

You know how you start organizing something thinking it will take you an hour then three hours later you're still not done...yeah...it was one of those projects. I had hoped to get more done today but at least I got kitchen straightened. 

One job down two million four hundred and fifty two left. Woop! Woop! Ahhh spring cleaning how I need you yet abhor you all at once. One icky job at a time. 


The one bright spot in my day was that my Mama came to visit. She helped me with Courtney and folded my socks. I do love how my Mama is always willing to step in and help no matter what needs doing. When we were done we decided to hit the road. 

Off to the mall we went. 

It has been quite a while since Miss Courtney had been out. She laughed and smiled the whole time. We had a little lunch and she just giggled form all the action. It was so nice. 

Then we got on the elevator to head to the van and all hell broke loose. Courtney had a massive seven minute seizure. There were three other children in there with their Mom. I was trying hard to keep smiling and talk quietly to Courtney so they wouldn't freak out. The Mom was calm and said she was so sorry for Courtney and told her kids everything was OK, not to worry. 

sound asleep when we got home...
Courtney was in full tonic-clonic jerks with gagging and choking. She was seizing so hard her wheelchair was shaking. My Mom braced herself against the chair and held Courtney's hands so she wouldn't hit anyone while she seized. I just kept whispering "Hail Mary's" in her ear and told her it would all be OK. 

It was the slowest elevator ride ever.  

The little girl, about four or five years old, looked at Courtney and then told her Mom "She's so sad. She needs to go to the Disney store for an Anna doll (like the one she was holding) then she will be happy."

Her Mom assured her that she would be OK in time. Then the little girl looked at me and said "She can have mine to hold if that would make her smile. Anna always makes me smile."

I almost lost it. How incredibly sweet. There is hope for the future my friends. I saw it today in this little ones face, so concerned for my Courtney, whom she didn't even know. All she wanted was for her to be happy and OK. 

Oh sweet girl, if only the Anna doll would make it so I would buy every single one. 

Monday, April 14, 2014

breaking open a reckless love...


As a Catholic Christian, this week marks the holiest week of the church year. It is what we wait for all year, the Triduum. Holy Thursday when Our Lord gathered the twelve and instituted the Eucharist at the Last Supper. Good Friday when we walk with Him on the road to Calvary and watch as He is put to death by our very own sin. Holy Saturday when the universe stands silent waiting for the Son to rise.

I was struck last evening as Deacon Marques was preaching about the importance of this week. He pointed out that in general we tend to rush to the big feast, barely paying attention to the importance of this week leading up to those three days. I pondered this for a bit, examining my own conscience looking at how I have treated this week in the past. I decided then that this year would be different. This year I really want to enter into what these days are for. 

To wait and hope and pray and wonder and pray some more.

This week is all about suffering, serving and loving above all else. I am coming to understand that concept on a deeper level every year. Two years ago on Holy Thursday my Courtney almost died. We spent Easter in the hospital. I know I have written about this moment before, but it comes to mind every Holy Week. The idea that we are here for just a short while to learn how to love and serve the Lord.  

With all of Courtney's issues this past week, I have done things I never thought I would have to do. Being the parent of a special needs child requires constant care and monitoring, especially when that child id non-verbal and non-ambulatory. It is challenging. I make no bones about that. It has made me paranoid in certain situations and more open in others.

As I enter into this Holy Week there is much to do. There is a home to Spring Clean, a daughter to care for and a husband to feed. I am tired just thinking about it all. I know  your list is just as long and varied as mine. I will admit to being envious of those who have someone come and clean their homes. I dream of that day. It sounds delightful doesn't it? If you are blessed to have this gift, don't ever take it for granted. To be a peace about the state of your home is a gift. 

But alas, I digress. I am writing my name in my dust. LOL!

I took a moment this morning over coffee to take a deep breath and decide how I would approach this day and this day alone. As I read todays Gospel I was struck by how over the top Mary's action was. She broke open the alabaster jar and poured it out over Our Lord's feet wiping it away with her hair. The apostles questioned the extravagance of it all and Jesus put them in their place. 

Extravagance. 

Reckless love. 

Over and above what is called for. 

Isn't this what Our Lord gave us on the Cross? An extravagant overabundance of love, given freely and with great joy. 



We have a Pieta in our church. I often spend time meditating in front of it. I look at the weariness on Our Lady's face and the peace on Our Lord's face. I know what that weariness feels like and I pray for that peace. So how do I make it all come together when I have only my own sweat equity to count on with the occasional supernatural push from above? 

I break open that alabaster jar and pour out my heart and soul with an extravagant and reckless love for those God has given me to care for. It's not always pretty or easy. 

Heck, let's be honest. It's never pretty or easy. It just is what it is. 

The only way I know to give honor and glory to my God, who gave Himself so extravagantly and with so much love, withholding nothing from me, is to embrace the hard work of living each and every day as best I can. If that means cleaning toilets, changing dirty diapers, dusting and folding and cooking and cleaning and dealing with idiot insurance companies, then I do it. I do it with joy and a smile. 

It is a choice to smile. It is a choice to love this way. Not and easy one, but one nonetheless. 

So on this Monday of Holy Week, I will pray (for me and you) and love and serve as best my body, mind and heart allow. I will give glory and honor with ALL I do and say to Him who loves me with endless mercy and grace.  

Sunday, April 13, 2014

what i wore sunday ~ vol. 48...


Happy Passion Sunday to one and ALL!

Today was filled with sunshine and very warm temperatures. It got up to 87 degrees today. That is crazy? Where is my Spring? Did Mother nature just skip it and move to summer? Wowza!

I have never met a chevron stripe I did not love. Maybe it started with Charlie Brown and that fabulous orange shirt of his. I always did have a thing for folically challenged studs. I found this little number on sale at Dress Barn (I think. I forgot to look at the tag and now I am sitting with my feet up and I am not moving to go check. This chica is tired.)


I decided to accessorize with yellow today. I can see me doing it with blue next time. The sweater is from Lane Bryant (last year) and the shoes are Payless. LOVE them! What a fabulous color and only $19.99?? I know, awesomesauce! They are wides as well so comfortable is their middle name.

I felt really good in this dress. I think you can tell. It's lined, swishy and flirty. Like me...I think...on a good day anyway.


Anyhoo, Miss Courtney went to Mass with us this evening. It's the first time she has been to Mass in I don't know how long. She is slowly, very slowly, making her way back to a normal state of being after this past weeks interesting gastrointestinal journey. I plan to lay low with her once more this week with only one trip to physical therapy planned. Our Easter will be low key this year. My Mom is hosting us and she is doing all the cooking. I am looking forward to spring cleaning my home and preparing for the Triduum.


Miss Courtney is wearing a sweater from Talbots Spring 2014 line, a white t-shirt and a ruffle tiered skirt from eShakti that we got last year. It was actually a dress but I made it into a skirt when the top was too tight and difficult to get on. The sandals are from Payless and the scrunched up smile face is from being out in the sunshine for the first time in weeks. 


For a bonus this week, I also added in the outfit I wore last night on a very rare date night out with my huband. My Mom provided the babysitting and the gift certificate for the meal. My husband provided the wonderful company. Chef Geoff's Restaurant provided the excellent meal. It was phenom! 

My maxidress is from Macy's and the sweater Lane Bryant, last year. It's actually grey with pinks and oranges but the light was a little off. It is so comfy. 


Well there you go. Have a wonderful week my friends and please do give me those prayer requests. I am making a Holy Hour everyday this week. I am honored to pray for you. 



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Go take a photo and join us won't you? Head on over to FineLinenandPurple and link up. Then you can head over here to Carolyn @ CCMMCFee What I Wore to Church,  Watch What I'm Wearing, celebrating modesty and fashionI'm also over at Sunday Style @ Plane Pretty , Tucker UpMonday Bloom @ DC in Style and The Pleated Poppy. It's a party!



DCinStyle


Perspective} WIW to church

Friday, April 11, 2014

7 quick takes 2014 ~ vol. 3

Time for a little link-up with Jen @ Conversion Diary.

#1
We declared a jammie day today with Miss Courtney. She is smiling, laughing and feeling so much better. Yay for that!



#2
Trying to find an Easter outfit for a young woman in a wheelchair has proven to be a bit challenging this year. SO many cute things out there but the skirt/dress length is very tricky for us. Add in trying to be a good financial steward and not spend a lot and having to find it online, well this Mama's fashionista tendencies are in overdrive. I found this dress at JCPenney on a really great sale and it should arrive this afternoon. We shall see if it works (crossing fingers)

#3
After undergoing a six week weight loss challenge (thanks Michele for the inspiration) I am down another five pounds and feeling again. My sweet friend Sharon signed us up for the Color Run 5K in DC in September as a birthday present. Only true friends skip the cake and go to the healthy fun run. LOL! To prepare Andrea has taken me on and I begin the program next week. Grace, I am going to need your best playlist to keep me from giving up. I admit to feeling very scared and totally unprepared but it's time this Mama put herself on the list. So here's to new challenges, lots of laughter and health for ALL! God help me now

#4

Gluten-Free Chocolate Chip Cookies...so worth the effort. I used this recipe. 



#5

I am looking for some great fiction to read when sleep leaves me. Whatcha got my friends? I love mysteries, thrillers. rom-com, sweet stories, you name it. Leave me a title in the comments. I would be so grateful. 

#6


I finally got to plant some green things this week. I pray we actually get to fed ourselves and not the local wildlife this year. Any thoughts on keeping bunnies and dear away without caging? Let me know. 

#7
I will be making a Holy Hour everyday next week as we prepare for Easter. If you have any prayer requests feel free to email me (mary_romance@cox.net) or leave it in the comments. It is an honor to pray for you my friends. 

Blessings, 


Head on over to Conversion Diary for more fun! 

Thursday, April 10, 2014

pretty, happy, funny, real ~ 2014, vol.8...

{pretty, happy, funny, real}

I haven't done one of these in a bit and I have been missing my {p,h,f,r} family so I thought I would drop in and say hello. I have needed to look deeper these days to find that contentment that Auntie Leila assure's me is here. 

It's been busy here these past few weeks with Miss Courtney. I won't go into the details yet again but needless to say, she is improving and things are slowly getting back to normal, or at least normal for us. 

{pretty}


I made 140 sugar cookies last week for an event and I had a blast doing it. So much fun and all those sprinkles are just so very pretty. Thanks to my friend Sharon her daughter Ellen and Miss Kieran for helping wrap them all. They are supper ribbon curlers for sure.



{happy}

I finally got to plant lettuce this week. I cannot tell you how happy this makes me. I was also cleaning out my front herb bed and was surprised to find that my oregano, chives and thyme had come back. 

Yay! Bring on the spring herbs. 




{funny}

What? You don't stand outside and dance just for the heck of it? Jazz hands anyone??



{real}

Thank goodness for disposable chucks. We have gone through dozens of them as Miss Courtney has gone through her intestinal cleansing. I am just so very glad it's over with and she is getting stronger. 





~ Capturing the context of contentment in everyday life ~

Wednesday, April 9, 2014

coffee for your heart #13 ~ you were made for this...


Today God is asking me to change the world one adult diaper at a time. It is where I am asked to be on this day to care for my beautiful daughter in her time of need. 

There is joy in Mrs. Meyer's Lemon Verbena Candles, detergent and hand soap. There is joy in iced coffee and a toasted pumpernickel bagel with veggie cream cheese. There is joy in knowing that surgery will not be required for my girl and that this too shall pass. 

Today I am searching among the piles of laundry and muck to see the face of God in this child whom I serve daily. 

Where is your joy today? 


Coffee for Your Heart ~ #13 ~ you were made for this... from Mary Lenaburg on Vimeo.




Tuesday, April 8, 2014

put on a happy face...


Apparently this is my week for unexpected challenges. Yesterday it was all about the boots. Today it was all about the poop. I know, I know, it's indelicate and unladylike to discuss such things, especially throwing it out into the interwebs. There are so many other things to write about why write about this? 

Well, I promised myself that I would always tell the truth about my life here in this space. This is daily life with a young adult with special needs. This is daily life with a daughter who cannot communicate her needs to the world. This is daily life with a suffering saint. This is the good, the bad and the poopy. 

Putting on my happy face and diving in...


before the day went to the toilet...

This morning Miss Courtney had a gastroenterology appointment as well as a G-tube clinic consult. She get's weighed, sees the Nurse Practitioner who checks her G-tube site and goes over all her feeding needs. We meet with her dietician, check her G-tube formula to make sure she is getting all the nutrients she needs, make any tweaks we need to and discuss any feeding issues she may be having. 

We did find a parking spot at this facility right away and it wasn't raining. That was a nice way to start the day. Once we got all the paperwork done, Miss Courtney was weighed. 

5'6" and 96 pounds. Not good. Too thin. 

She is losing muscle. Not good at all.

Once I get that news it's into the exam room we go. We talk about how well she is doing in PT, how she has learned how to roll over since her last visit here and all the other good things happening. The NP starts her exam and all of a sudden it's quiet. She poking and prodding and the conversation turns to constipation and a possible impacted bowel. Then we move onto a possible enlarged thyroid and this Mama's heart begins to beat a little faster. 


sonogram heaven...

We make several changes to her G-tube formula to help with the constipation. We add in another dose of lactulose to assist with this as well. Then she listed the fun stuff. We had to have an X-ray, today. We needed to get a sonogram on her thyroid, today. We had to begin a "cleanse", today. 

There are times when being the mother of a special needs child who doesn't walk and doesn't speak is really challenging. Today was one of those days. 

I wish Courtney could tell me her tummy is hurting and she needs to go potty. I wish she could walk so she could "work it out". I wish she didn't have such a high tolerance for pain so I would know to help sooner. It is THE most frustrating part of parenting a non verbal special one.  

So what started as a 60 minute regularly scheduled check-up turned into a six hour hospital marathon. 

We got the X-ray taken. No bowel obstruction (thank you Jesus) BUT she was way backed up. When I say my daughter is full of s***, I mean it literally. We moved onto the blood work. Thank goodness the technician was a good one and got the blood draw in one stick. That is always this Mama's prayer with blood work. Get it in one. Thank you Blessed Mary, he did. Then we were off to have a sonogram on her thyroid. All clear. It's deviated to the right side of her throat because of the way she holds her head but it looked "beautiful". Thanks Doc. I like a beautiful thyroid. 


hospital gown couture...

Now comes the fun part. The "cleanse". For the next 48 hours Miss Courtney will only have bone broth and homemade pedialyte while undergoing two Miralax bombs a day AND Exlax at night. This is how it's done without taking the nasty stuff I have to drink before a colonoscopy. Sweet Molly McGee...my life has become a big poop party. BTW, she is on day number three of her monthly. Still two more left of that great gift. 

Now this. 

Can you hear my joy? 

I mean seriously?

Dancing here? Bowel dancing for sure...

OK bad joke. Really bad joke. But we are talking poop here. I've got nothing.  

Now, I can complain all I want but all I have to do is make her comfortable and clean up the results. My poor Courtney has to go through this lovely experience. I feel so bad for her. I suppose on the positive side she will feel ever so much better when it's all done. At least I hope so. 

So no PT again tomorrow. No dinner with friends on Thursday. It will be me and my daughter Courtney the Pooh. 

Let the party begin.  
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