Friday, December 20, 2013

Hey!

The night's not over yet, but I can see that you're getting a bit discouraged, so I thought I'd start early and then add stuff as we go. You were doing pretty good until Becca had a big seizure right as school was getting over. Driving to get her wasn't fun, I can tell. It threw off your groove! You might want to find a new way to get there before that stoplight gives you permanent anxiety, Friend. ;)

You braved the crowds at the school today and saw your kids sing their hearts out. I don't understand why they combined all of the Kindergarten and Preschool kids and made all the parents come in the morning either! I know how you just loooove a good crowd. Not! The other parents all acted like they were the ONLY parent in the room, but you could still see Landon if you tilted your head just right! And you went! You were there! And you got to drive home with just Landon and that was fun. :) It's okay that you don't attempt pictures at these things. Who needs a poorly lit faraway picture when you can have one like this:



It happened on the same day and you can see their faces WAY better! And you got to enjoy the singing instead of ending up with a swervy poorly lit video that you have to count heads in order to find your kid in.

You mailed off an order today! You even doubled it so that some lucky family gets 2 oxygen tank covers. I really hope that they get there on time for Christmas, because we all know they ordered them in enough time. Teacher gifts went to school today... Good job! You even got a personal thank you from Becca's teachers. ;) While Geoff was out there actually mailing off your order, he also picked up some fun treats for the bus drivers. They will really love them when school starts in 2 weeks... you might wanna throw those in the freezer or something. ;) 



They say something like "Thank you for being such SWEETARTS and waiting for us while we are such BUTTERFINGERS getting Becca ready. Merry WHATCHAMACALLIT... I mean, Merry Christmas!"

You're doing a great job on Donata's embroidery project. I'm pretty sure she will love whatever you end up doing... just as long as you DO it! They're not all going to live in the same house, so don't worry about the size of the letters, just go for it! You've totally got this! Two down... Eleven to go! (Ug! I shouldn't have counted until I was further along.)



Geoff needed something for his project (apparently it's for you because he hasn't let you upstairs most of the night so far ;) and while he was gone you got a toasty nap under the electric blanket. Mmmm! And he even brought home pizza for dinner! 

Since you've been quarantined to the basement you have started the last of the pajama eaters for this year. Now, let's get some more embroidery on and then keep going on the pajama eaters. Don't let the embroidery get you down... one at a time... we'll get there eventually! 

And hey, he's a couple of months old now, but you finished Hayes' blanket! Maybe you can take it to Church along with your YW gifts and be the tacky queen of the day, but people will get their stuff. Maybe you can go and hold the baby another day. You could really use a baby moment. <3


Let's finish off this post with an obligatory picture of pajama eaters. All the ones you made for this year:

Washington neices and nephew.

Tooele neices and nephew.

Forgot to put the right kind of mouths on 2 of the girl ones an didn't even realize until you had made the same mistake 4 times, but they turned out different and kinda cute. 


Hey, there!

I know you don't feel like you did much today. I know your hip felt like your leg was going to fall on the floor... and then it didn't... and then it did again. I'm sorry that it hurts and that Aleve doesn't seem to help. I thought I'd remind you what you did today that was awesome even though you hurt and Ethan is now coughing and wheezing. That's not your fault, you know. He probably caught it at a friend's house whose mom didn't mention it because she thought her kids felt better enough to have a friend over. And your boys had SO much fun with their friends.


Emily got her braces today! You picked her up, fed her and her brothers, let her brush her teeth, dropped off her brother to Kindergarten and then took her to get them. She is SO excited and she's going to not only get more and more beautiful, but she will FEEL more and more beautiful as the months go by. Look how excited Geoff is to do this for her. ;) 


This is where you sat and cuddled with Ethan this afternoon. You both dozed a little, I think. He is such a cuddly boy and even more so when he doesn't feel good. I'm sorry the phone rang just as you drifted off a little bit and that you had to run all the way upstairs to answer it, but what you did here with Ethan was important. The phone call was Geoff, by the way, not to point fingers or anything. :D

You made lasagne for dinner! Even though you didn't really feel like doing something that involved, it turned out great! Gracie caught your eye and told you very sincerely how much she liked it. And even picky Ethan ate it! Score!! He didn't eat his green beans, but he did finish his lasagne.



After dinner, you buckled down to the mountain of sewing you have. I know you didn't finish as much as you'd like, but let's focus on what you DID finish! You got all the way done with teacher gifts. Nevermind that they have to go to school tomorrow... at least you weren't trying to sew things in the morning! And you finished that oxygen tank that someone ordered. It should get there in time for Christmas if Geoff really does help you get it in the mail tomorrow. Someone's oxygen toting experience is about to get a little less clanky. :D Oh, and the Young Women Leader gifts are done now, too. You could take them to Church to hand out. Maybe that's a little tacky, but I"m sure they won't mind... all of them carry big bags to Church anyway. ;D

You know, now that I think about it, the teacher gifts were done when you started sewing tonight. You only worked on the YW ones. Go, you! The towels were done way ahead of time! And you got hand soap to go with them today at the store after braces, so you're set. Nevermind that you forgot to grab food for your assignments for your Dad's birthday Sunday. Who remembers the Brussels sprouts anyway?

Now, get to bed! You've got a busy day tomorrow! After tomorrow morning, you can turn off your morning alarm for like 2 weeks! WOOHOO!! :D

Saturday, October 05, 2013

Welcome to Holland


I was able to sit down and watch more of Conference than I thought I would... aside from taking care of Becca during choir numbers. When taking care of her once took longer than I hoped, I heard Elder Holland's voice coming from the TV downstairs and, with a few seconds of delay, coming from the radio in the living room. I hurried and finished and scooped her up and practically ran downstairs. I had to move things off of the chair with my foot and then we plopped down together to listen. 


Elder Holland described things he can only know by being there and by seeing things through the lens Heavenly Father provides him so that he can have compassion for others. He spoke, with tears in his voice, the words so many of us suffering with depression long to hear someone say. "I've been there. It's real and horrible. You can get through it. The Lord loves You." 

Somewhere in the middle of his talk he spoke to the caregivers. The first time I heard that, sitting in the chair with Becca cuddled up to me, I heard him talking to me as her caregiver. When I've re-read the talk, he was probably still talking to the caregivers of people with depression. What I needed to hear, I heard. Being Becca's caretaker is not only hard physically. I needed to hear the love and encouragement he expressed so eloquently. It was about this time in the talk when the tears running down my face became audible sobs. My 11 year old daughter turned around and looked at me and said later that I made her feel awkward because she didn't know what to say. Neither did I! It isn't often that someone expresses thoughts and feelings you so desperately need to be acknowleged and understood from a pulpit for millions of listeners to hear.

At the close of his talk, he expressed the ideal outcome that all of us hopes for. He talked of the glorious resurrection into perfect bodies with perfect minds. I saw myself standing next to glorious Becca. Both of us free from the restraints of physical and mental disabilities. I can't even begin to describe how much hope that gave me. 

It can be dificult not to "wish our lives away" or to waste away in front of the mirror of Erised, but I think looking forward to not suffering can help put things in perspective. This life is but a short moment. Any mother will tell you that as she watches her children grow up in the blink of an eye. In the midst of a mental battle with being happy with oneself and giving in to the weight that threatens to pull us down to the depths, it is hopeful to look forward to a time when the battle is not so great... when it is not so hard... when our mortal bodies are not the enemy anymore.

Elder Holland's talk was the one I prayed for before Conference. I wasn't expecting to be so entirely understood, encouraged and uplifted. I hoped for a nugget to cling to and was given an entire mountain of strength. I'm experienced enough to know that I will forget this feeling some days. The battle with depression is not so quickly won. But I now have yet another tool in my belt to help me fight. And with Elder Holland on my side, I have a really, really good chance!!

Friday, October 04, 2013

Dream Car

What my dream car should be:

What my dream car is:

Maybe I'll ask Santa for one of each!

Thursday, October 03, 2013

On Pain

Okay, two rules:

I purge some of these negative feelings and I move on. 

I let them wash over me and then I ask them to leave.

 I saw this on facebook yesterday and grabbed a copy from thethingswesay.com. The second I saw it, it took me right back there! I even gasped and put my hand over my heart, the feeling was so intense.





I rememember doing this when I was a teenager. I remember doing this when they boy I thought I loved broke my heart in college. I still do this. In fact, on really bad days I avoid making eye contact with myself because I'm afraid of what I'll see there. It is so much more painful when you can see the pain AND you know what it feels like on the inside.

I wanted to put this up here because I think everyone has probably felt this way. Everyone has had an unspoken conversation with themselves in the mirror, hoping it would somehow make things better. Have you ever caught sight of yourself trying to hold together when you're falling apart inside?

I want to talk about the times when you see light in those eyes, but today I want to point out that we are the only ones who know the storms that happen on the inside. Sometimes strength is not letting it show. Sometimes strength is admitting that you need help and then driving yourself over there. Sometimes strength comes from reading something uplifting that you've read a hundred times, but it finally means something different to you today. Sometimes strength comes when you share your perspective with someone else and it helps them. And sometimes strength is not letting it show until that becomes the truth. Smiling until you feel like smiling. Praying until you feel like praying. 

I want my kids to know someday that I've been through some very down times in my life. Dark times created from circumstances and my stamina, or lack therof, in handling them. But the great thing about times like that is that they don't last forever. They're not strong enough to beat me all the time. The times that I feel like the darkness is stronger than me are getting fewer and fewer. I choose to fight. I choose to go out and arm myself with tools that strengthen me. I choose to take my burden out and talk about it and look at it from lots of different angles until it's not such a burden anymore... until I understand it better. I choose to sit pieces of it down or let others help me carry it or to throw some pieces of it up into the air and explode them with an imaginary missile! 

I don't want to post this, but I really also do. I'm pretty sure I'm not alone in these feelings, but I'm a little afraid of being judged or falling off of someone's "pedestal." Please don't put me up there, it's an awfully far way to fall! I'll just have to write lots of happier posts until this one gets pushed down from the top of the blog. It's all true, though, and I wanted to have a record of it.

Tuesday, October 01, 2013

I think they call this hope


Things I am proud of that you may or may not know about me:

I love country music! I love listening to people sing about how much they love their country and their family. And I'm not saying country is immune to less savory subjects, but man! there are some really great country songs! Gimme some Collin Raye, John Michael Montgomery, Nitty Gritty, Brad Paisley, Rascal Flatts and Reba any day! I am proud of my choice in music.

I can bake bread! When we were first married, I would follow recipe after recipe and never have bread turn out. We even bought a bread maker machine and it still didn't always turn out. While I was researching the bread maker's website, people were talking about adjusting the recipe and how the bread should FEEL at different stages. You mean you can open it up during the cycle and check and adjust?! Ever since then, I have taught myself how it's supposed to go and I can do it! Homemade pizza dough, rolls, batter bread and dough bread. I am proud of how I bake bread.

I don't have to have a pattern to sew. Don't get me wrong, I LOVE patterns (and recipes) and there's a reason someone got paid money to tweak those things and make them work right. But I get a little natural high when I can change something in a pattern and still make it work. Mending and using tutorials from the internet are fly-by-the-seat-of-your-pants type sewing and I like the challenge of that. I am proud of my mad sewing skills.

I love my cowgirl boots. I don't know if this is because of the copious amounts of country music I listen to or what, but I seriously want to wear my boots all the time. A huge contributing factor is that cowgirl jeans are the longest jeans I've ever worn and I can't get enough of those pools of denim at my ankles!  I am proud to wear my pink and brown boots with my extra long jeans and it's one outfit I feel truly awesome in.

I am articulate. I can express myself fairly well with words. I often pause (especially when in front of a crowd - eyeroll) because I want to use the exact word that I mean. I LOVE thesauruses! I love to click through and find the word I really mean, not the one that is close. I am proud of the way I speak and write.

Every so often, I feel the urge to do a post like this. (Like here and here, for example) I'm never really quite sure why. It's obviously for myself. I want to remember what I'm good at, so on days when it feels like the answer to that question is "nothing," I have something to prove my more downtrodden self wrong.

Because if I can replace even one negative thought with a positive one, I think they call that hope.

Monday, September 30, 2013

Talented FHE

Tonight for Family Home Evening, Gracie led us in a lesson about talents. She accomplished a goal in her Faith in God booklet by doing this. I just had to share what everyone wrote down for their talents. In no particular order...

Landon (6) is good at:
writing my name
imagining
I'm working on walking to school all the way
making up new games
putting on slip on shoes
wearing hats
going to sleep
(He has always been very good at that! He used to put himself down for naps and even now he is a star at going to bed when asked)

Geoff (37) is good at:
programming computers
drawing
computer art
woodworking
welding
building

Emily (11) is good at:
drawing
reading
learning
helping others
legos
baking
math
being sarcastic

Gracie (9) is good at:
climbing high
adventuring
playing with the boys (her brothers)
reading
math
writing
hiking
running

Ethan (4) is good at:
running
climbing trees
playing

Diana (36) is good at:
writing
baking
sign language
sewing
sleeping

Becca (13) is good at:
saying yes and no (with the direction that she is looking)
feeling the Spirit and sharing this feeling with others
saying 'I love you' and helping people to be patient enough to wait for her to "say" it

Aside from Becca's, these were all in their own words. I loved hearing what they thought about the good in themselves. 

Earlier today I was finishing up tailoring work on a wedding dress. A teenage cousin was resisiting his mother who was trying to get him to practice the piano. I asked him if he wanted me to tell him the parable of the talents from the scriptures. :) 

It made me think, though, that if he had any idea how he will value that talent later in life, he would practice with much less cajoling. How often do we miss out on something we're good at because we choose to spend time doing less meaningful things instead of practicing and developing a talent in earnest? How many people would love to be able to practice the talents we have and circumstances won't allow it?

Don't waste your talents, People!

Don't bury them, hide them, disuse or disrespect them! And yes, I absolutely mean you, Future Emily, Future Gracie, Future Landon and Future Ethan!!

Sunday, September 01, 2013

On Talents

In the parable of the talents, The Lord of the vineyard gives each of his workers a certain amount of money. When he comes back, they are held accountable for what they did with his money. One doubles his money, one gives him an increase and one buries it and gives it back to him just as he recieved it. 

When I was younger, I had a hard time discovering my talents. I tried lots of things, but didn't feel like I was great at any of them. One of my leaders who I had as a Merrie Miss and later as a Young Women President, Tammy Borrego, pointed out to me once a rather unseen talent that I had with children. I remember discounting this as a talent because I was so boring, her baby always fell asleep on my lap when she got passed down the row of us in the back of the Primary. She stopped me and pointed out that I was the one she fell asleep on each week because I knew just how to hold her and comfort her so that she could rest when she was so desperately sleepy. That made such a big difference in my life! I had always loved to be around children, but now I saw what I did as something only I could do. Something to be proud of. Something I was actually good at.

I love music and I have played the piano and the clarinet. Neither exceptionally well and neither anymore, but I did learn to play them once upon a time. I taught myself how to sing alto. Not well enough to sing a solo or even a duet, but I do alright in a group setting like Church. I can cook well enough to feed my family without too many stomach aches. I have a knack for reading people and being able to tell when what they're saying is only part of the story. I have been able to lift people when they are down and been the other half of some really, really neat conversations because I am open, receptive and have become a good listener. 

I am known as a seamstress. I sell a little here and there and I'm good at mending and sometimes even a little light tailoring. I have a passion for writing. I love to tell stories and to figure out how to make them funny and exciting and to hone them until they're smooth reading.

Of course, I'm not naming these things in order to brag. Rather, I sometimes need to point out to myself where my talents lie. I need a reminder of the gifts The Lord has given me that I should be sharing. I don't want Him to come back to His vineyard and I bring him the same talent he gave me that I buried and I say, "Here it is, I did nothing with it." I want to use and share my talents over and over again. And the funny thing about that is that instead of being used up, they multiply when you do that. You gain more talents by sharing the ones you have. 

Today, I started my fast with a question. Which talent should I focus on? Sewing or writing? From a financial point of view, sewing is a more ready avenue for earning money. It is a way I can contribute money to our household. But, as of late, writing has been begging me to spend time doing it more and more. I daydream about my stories. I get really fired up when I'm talking about them or working on them. But (and this feels like a really big 'but' some days!) I'm a ways off from making money at it even if I ever do. I struggle justifying time spent on these two things because I tend to need to put a value on it. And often it feels like I need to put a monetary value on it.

So, during Church I was keeping an ear out for someone to say something in a testimony or a lesson that would help me make decisions about how to "spend" my talents. I had no doubt it would come. Sure enough, during the last hymn of Sacrament meeting inspiration struck so hard it brought tears to my eyes. We were singing the last hymn and I was really excited to subsitute for my friend teaching the 16 and 17 year old youth. I love to teach and share my testimony with small groups of people. I really, really love feeling their testimonies back! As I thought about how excited I was, I thought about how loving to write helps me to teach and how I can share my testimony when I write, too. And then that feeling came when it feels like The Lord reaches down and puts His hand on your shoulder with a smile and that look in His eyes that says, "Yes! That!"

I know my Heavenly Father loves Me. I know He cares about how I spend my time and I know He loves to use me to help uplift and inspire others. I also know I am not perfect. I am not now the best writer I can be. I know only that I love to try to become so. It's discouraging and I don't have any tangible rewards from it yet, but that doesn't mean it's not valuable as a talent.

Of course, I will still sew for you if you ask. ;) I hope to sew some more wheelchair coats this winter. I love to use the talents I have been blessed with as much as I love to be blessed by the talents of those around me. Take it from me, don't bury your talents! Use them! Love them! Embrace the special abilities Heavenly Father sent you with to this earth! Life is so much more fun and fulfilling when you do.

Monday, July 29, 2013

The Blog I Just Found

http://www.wheelchairmommy.com/

After I check my farm on Hay Day (a fun farming app game) and my Facebook and I still want to look busy or I'm just not ready to get up and do anything else, I surf Pinterest. I know! I know! Don't judge! You probably do it too!

Earlier today when I did this very thing, I was searching g-tube pads because I'm going to make some for my little hero Elsie and if someone had an awesome tutorial up, I wanted to take advantage. It was still open to that when I opened up my "time waster" a.k.a. iPad and so I started searching other special needs-type stuff. Last time I did this, there wasn't much. Not so this time! I found a lot of fun stuff! I should totally make pin-able tutorials and stuff... in all my spare time. :D

After I searched a couple of things, I deleted the more specific words and just searched "wheelchair." This fantastic blog came up that, without meaning to or trying to, totally made my stinkin' day! She's a Mom and she's in a wheelchair. I love her sense of humor and I love that it's just a thing. She gets that it's fascinating to the rest of us, but to her, it's just her life. The life she is living just like the ones we are all living. I don't know exactly what it was that made me stay there for over an hour. I really believe if I just ran into her at the park with our kids or at a store or something that we could totally have a cool conversation and maybe even be friends. I also loved the glimpse into her side of the story. Becca doesn't give me a lot to go on. I liked reading about how she feels about being in a wheelchair and that she's totally cool with it. Hopefully Becca's totally cool with it, too.

Enjoy!!

Wednesday, June 26, 2013

Thirty Minutes

Today I suggested the kids each spend a half an hour with Becca to do whatever they wanted to. I gave them ideas like reading to her, listening to music, playing with toys, singing to her... whatever they wanted.

Emily jumped to volunteer first! She brought up her dolls and played dress up with them and Becca. She brought up Becca's doll and laid it beside her and I could hear her from the other room giving Becca a play by play as she talked to her and dressed their dolls. She also painted her nails. And we all know that if you paint your sister's nails, you simply must paint your own nails afterwards!


Landon decided to start off reading a book, did a puppet show and finished with a game of pillow monster. As near as I could tell, the last one involved flying pillows. :D





First, I caught Ethan licking the window screens. And then he drew her a picture.




After lunch, Gracie read Becca a story with really great voices. She had to fight off the boys because she sounded so fun in there! Then she painted her toes.



I thought this idea would come across more as coercion, but they definitely made it their own! They were excited to do it and really had fun. All of them, except the youngest, said their time with her flew by and didn't feel like "a whole half an hour!" I'm very proud of them and I hope this becomes a regular thing even when it's not my idea. 

Thursday, May 30, 2013

Summertime Goals

Fix Becca's hair every day

How: I will not fix my own hair until she is dressed and her hair fixed.
Document: I will post pics on the blog weekly of my favorites.
Always laying on or leaning against something rats up Becca's hair. She hates having it brushed and fixed when I have to brush out the tangles, so I have been known to give her days off. This doesn't do anybody any favors and every teen age girl deserves to look her best every day. 

Rearrange my Bedroom

How: De-clutter and get rid of stuff so we can walk in there. Laundry closer to the closet and the bathroom and TV at an angle that doesn't crick my neck... yeah, yeah, first world problems, I know.
Document: Nobody needs to see pics, I'll just live in a nicer space and be content.

Rhubarb Pie

Just YUM! 

My current Work In Progress finished and sent off

How: Rough draft done by my Mom's birthday. An edit or two and send. it. off.
Document: Maybe I'll brag on Facebook here and there about how far I am.

A yard Larry would be proud of

- Healthy raspberries
- Prune the behemoth tree in the back
- Work on the lilac hedge
- Something needs to be done about the corner garden in the front... prune roses, possibly get rid of the huge pines and replace with something pretty and ornamental.
- Keep up on the front flower bed. Peonies. Holly hocks. More perennials.
- Dream about things like flower boxes on the bedroom windows and pavers around the window wells.

GO and do something fun at least once a week

Last year, between Becca's needs and the potty training needs of others, we didn't go very many places. I would go days without really leaving the house or our yard. This year will not be like last year. Even if we walk down the park a few times a week, we need to get out. I'd really like to actually go places, though. We have a Thanksgiving Point pass and the Pass of All Passes and my girls are old enough to be great helpers in public. This goal is for my own protection and the sanity of us all! 

Goals are due before the first day of school this Fall.

Wednesday, April 24, 2013

Last night I submitted a book to Covenant

Geoff was actually the one that clicked "send" after checking off all of the figurative check boxes for submitting a book to Covenant Publishing. I have had so many ups and downs with this project. That's an understatement. Before I tell you about the publishing thing, I need to tell you about the finishing thing.

One evening not very long ago, I was planning to sit down and write after tucking my kids into bed. I had this fun story about a fairy born without wings that I was totally enamored with and I loved working on it. Instead, I found myself pacing around the living room upstairs (the computer is downstairs) wondering what was wrong with me. My head is always exploding with ideas, descriptions of things, fun phrases and ways to say things that are unique to me. That wasn't the problem. After pacing and even hitting my knees and praying, it finally dawns on me that I'm terrified of finishing my own book. I can't come up with a good ending and I can't ever seem to feel like it's good enough because then it will be over. I'll have to stop writing about Avia and her friends solving this particular conundrum. I'll have to send it off to some faceless person behind a desk somewhere with a little plaque that says "Publisher" on it.

So, my rational self steps up to my terrified irrational self and says simply, "What's the worst that could happen?"

"The publisher won't like it!" says Irrational.

"So what?" Rational shrugs.

"I'm not successful if I don't get it published." Irrational says, leaning forward into Rational's face.

"Who says?" Rational puts her hands in her pockets.

Irrational thinks for a minute before responding, "Everyone! Everyone says that! I'm not a real author if I don't... you know, publish something."

"Do you enjoy working on it?" Rational's steady gaze is in high contrast to Irrational's frantic pacing and arm waving.

"Heck yes I do!" Irrational yells.

"Well, then instead of finishing it for that faceless publisher, why don't you finish it for yourself? Why don't you promise me, your more rational self, that you'll finish this one instead of playing with it forever? Why don't you figure out an ending and finish it just for me? What would be the worst thing about that?" Rational folds her arms and waits patiently, gazing steadily at Irrational.

Irrational sits back and strokes her chin thoughtfully. "Well, I can't think about anything bad about that. I mean, that would be great! I certainly don't care about what anyone else thinks when I first write something. I write what I love and what I would do in that situation and what I would like to say on the subject." Suddenly she looks up, her eyes shining. "I could do that. I could write it for me. If some publisher likes it, great, but I'll already know I love it."

And that is about the point that I walked myself downstairs and got serious about a good ending to my book. Some of those comments were, of course, said by real people. SO many people have encouraged me and rooted for me and "liked" my silly status updates on Facebook. It has been an incredibly amazing journey and I'm only a few short steps in!

So, when I hit "send" last night and sent off my very first manuscript to a publisher, I expected to feel giddy and elated and manically happy. Instead, I felt so much peace. I had promised myself I would do this and I came through. I didn't back burner myself this time. I didn't ignore or put myself off. I actually finished something, such as it is, and put it out in the world to see what happens.

I can't say that I won't be disappointed if I don't get published. But I won't be devastated. I still did something big and hard and I can keep trying. High five, Self! You did it!

(This is an early version of my main character, Avia, that Emily drew for me. I wrote this as much for my daughters as I did for myself. This was back when we were talking about how she would get herself around the forest without flying. :) )

Monday, February 18, 2013

From your U.S. penpals!

When Becca was about 18 months old, I happened upon what was then called a listserve for CMV. At the time, you could write an email and it would be sent to everyone on the listserve. It was a great way to be connected to other families going through the same things we were. Since then, it has evolved and mostly resides on Facebook right now. I have made so many treasured friends over the years. One of those is Debra who lives over the Pond. I would give almost anything to be able to travel and meet her and give her a great big hug. My kids hear me pray for her and her family and they have taken it up, too.The rest of this post is for her and her family, though you're welcome to a peek.


Dear Debra,
I showed my kids pictures of your kids and you can tell what they found most interesting. ;) The pink violin was a pretty big hit. :) We hope these pictures make you smile. We like knowing other families who are going through the same things we are. Becca is the oldest in our family, just like Hyrum. My girls are so glad to have each other for sisters and my boys have been a fun addition. We just wanted you to know that we are thinking of you and pray for Hyrum's continued improvement, comfort and well-being every day! Without further adieu, here are my little artists and what they have to say about what they drew for their new friends. ;)

Much Love,
Diana

From Ethan, 3 years old:

I asked him what it is and he said it is a circle. :)

"I drawed for him a snake."

From Landon, 5 years old: 
"Hi, Abby! I drew your pink violin. I just hope you like it."

"I drew Bobble from the Tinkerbell movie. He's in his house that's a tree. Also there's a rose (in the middle) and a butterfly and a rainbow and also the moon."

"I hope you like your picture of you watching your movie."

Gracie, 8 years old:

"Cool violin!"

"I like the muppets, too. Becca loves music and I like it, too."

"Roses for Rose." :)

Emily, 10 years old:

"I drew this for you because my Mom told me that you liked Muppets and Disney characters."

"I drew this for you because I thought you would like all of the colors and hearts and stuff. I also drew the violin and music box because I knew you liked music. I know how it feels to have someone like Hyrum in your family. They know you love them a whole, whole bunch even if they don't say it back. Hang in there!"

"I drew this fairy as you because my Mom is writing a story about a fairy and I really liked that story. I drew the rose to look like her house. I also drew a river and a walnut boat in the corner." :)

Love,
Your US penpals!





Tuesday, February 05, 2013

Becca's Story a.k.a. I Should Have Typed This Up a Looooong Time Ago! a.k.a. The Really Long Version


My first pregnancy started just as my college career ended. I was barely pregnant when I graduated with my Bachelor's Degree in Family and Consumer Sciences. In fact, I didn't even know yet. I didn't take the test until after we came home from a friend's wedding where we saw a lot of family because I didn't want to have to not tell them. I was super duper sick for most of Becca's pregnancy. We had neighbors that smoked (they weren't allowed to, we lived in student housing at USU) and my allergies flared and it was quite a miserable summer. If I showed active CMV symptoms, it would have been hard to tell them apart from everything else.

Our very old school OB (he had delivered my husband's older brother) didn't do ultrasounds himself. He had someone come in and you could sign up to get one. So, he does one and as he's measuring and he says that his machine must be off and that we should go to the local hospital and get an ultrasound there. At the Logan Hospital, weirdly, their machine's measurements were off, too, and we were sent to Ogden to McKay Dee Hospital. At this point, I started to freak out. I was so completely nervous, I couldn't think straight. Of course the ultrasound tech can't say a thing and so we waited for the Radiologist. He was a smallish, brownish man with glasses. He wheeled his stool over in front of me and looked me square in the face. He said something like this, "Something is wrong with your baby. Her brain is too small and there are some other problems. Are you going to abort this baby?" After a very strong NO from us, he continued to outline the damage that he saw and then he said something that got me through the rest of my pregnancy, "She is the same baby you walked in here with." There was nothing to do, but wait until she was born. I was already in love with her, I couldn't deny that. I continued to talk to her and sew for her and picture her in my mind. Disability and viruses didn't cross my mind. She continued to grow on her own curve. She would do this thing where she would stretch out really, really hard, like board stiff and then relax back. Looking back, I'm pretty sure those were seizures.

I had some really strong Braxton-Hicks contractions the night before she was due. I remember thinking that I would try and go to sleep and if I could sleep through them, they probably weren't real ones. I was rather disappointed to wake up the next morning without having gone to the hospital during the night. The next day was her due date, January 12th. That night, I had really strong Braxton-Hicks again and went to bed, again, hoping to be woken up. Around 4 in the morning, I woke up because it hurt and I got up and walked 3 steps to our living room without waking up Geoff. I drank something, ate something and turned on a movie on our teensy TV. Around 6 am, I woke Geoff up. We wrote down contractions and finally went in. She was born around 9:30 am, January 13, 2000 weighing one ounce shy of 8 pounds! A really good weight for a first full-term baby. She'd had a little bit of meconium, but otherwise wasn't under any stress at all. Her small head had made for a very quick labor and the doctor, who had attached a vacuum, couldn't get it off fast enough as she came out in such a hurry!


She was so tiny. So soft. So pink. So perfect. She had fuzzy dark hair and long, skinny fingers.

The nurses got after me the second night because she came back to the nursery too cold. I had to unwrap her and play with her toes to get her to eat. She was such a sleepy eater. The morning we were supposed to go home, I woke up and asked them to bring her to me. They didn't. I waited. I asked again. I waited some more. They finally told me they'd had to put her on oxygen the night before because she couldn't keep her sats up on her own. When Geoff got there and we finally got to go down to the Nursery, she was in a head box. Meaning there was a plexi glass box over her head with a higher concentration of oxygen swirling around in it. They don't usually do this anymore because it can damage the baby's eyes. They kept her a couple of extra days in the Logan hospital because she just couldn't keep her oxygen up. Walking out of that hospital was one of the hardest things I had ever had to do. I didn't get to ride in a wheelchair holding my brand new baby. I walked out, leaving her behind.

After a few days with no changes, they decided to send her up to Primary Children's Medical Center. She rode in an ambulance early in the morning and we followed in our car a little later. My eyes were wet most of that ride thinking of her in a big scary ambulance without me. When we got to Primary's she was finished being checked and she was squeaking as the nurse was doing something for her. She had this little squeaky high pitched cry. I went over (after endlessly scrubbing up) and talked to her and tried to comfort her. When I reached down to stroke a wiggly foot, the nurse told me I was touching her wrong. I immediately stepped back and sat down in the nearby rocking chair and bawled. I didn't want to cry in front of someone I didn't know who was touching MY baby, but telling me not to, but I couldn't help it! She tried to explain to me why she'd said that and how to firmly, gently touch her, but I really felt like the peon at that point.

We got to hold her a lot while we were there. She wasn't there to "fix" anything, they were just trying to figure out why she couldn't breathe the same air we did and keep the oxygen in her blood at high enough levels. IVs changed sites every couple of days and the worst one was the one they started in her head at her temple. She took my milk well, always from a bottle. She had plenty of wet and poopy diapers. She just couldn't seem to get the hang of breathing consistently.

We were only at Primary's for a total of one week. Sometime in the middle of that week, after looking at an ultrasound they had done of her brain through her soft spot, the nurses were encouraged to get a urine sample to grow a culture from to test for some things. They also re-moistened her umbilical cord and took blood samples from there. We were then informed that she tested positive for a virus called Cytomegalovirus and that that is likely what had caused her brain damage. The spaces in your brain are called ventricles, they're supposed to be there. Becca's ventricles were enlarged, meaning extra fluid and less brain matter. Also, the left side of her brain is smoother than the right side. She also does not have a corpus collosum. There were also little white dots on the pictures they showed us that showed calcifications, or where the brain tried to heal itself and left little calcium deposits behind. Her brain was damaged quite severely, but nobody ever said it that way. The wonderful neurologist we were put in touch with just happened to have been studying CMV for nearly 20 years. He gave us a pamphlet or two and told us what to watch for (hearing loss, Cerebral Palsy, vision loss, etc.) and gave us an optimistic, "We'll just have to wait and see what she can do!" I have been forever grateful to him.

The night before we were supposed to go home, a child came in during the middle of hte night with a mysterious illness. By the next morning, he was found to have RSV and all of the babies in Becca's little corner had been exposed! She tested negative and we were able to take her home to Logan, but the next day at the doctor's check-up, she turned blue in his office and we were admitted to the Logan hospital with RSV. Geoff was able to go to classes, having only missed a day or two, so it was somewhat of a blessing. He would drop me off at the hospital, go to class and come get me when he was done. Here, she was still on oxygen (a cannula in her nose) and breathing treatments (nebulizer). After a week, she came home for good, but still on oxygen. We hooked her up to an apnea monitor and oximeter at night to keep her breathing and measure the oxygen in her blood. We kept people away even though I had contracted RSV, too and sounded like I was coughing up a lung!


She got her first hearing aid at 3 months old. They used to do hearing tests in a modified picnic cooler. We had this incredibly nice audiologist (whose picture was in the Ensign one time) whose voice Becca really liked. He was the one talking when he first turned on the hearing aid and my beautiful little 3 month old turned towards his voice! And then when I started talking, she turned right towards me! Miraculous! We used to lose it all the time on account of how tiny it was and we had chosen a clear ear mold. After that, we always chose fun colors! At around a year, we tried another hearing aid in her other ear and glasses. She wore the glasses okay, but it was always so hard to tell if they did her any good. She rarely made eye contact and it always looked like it was a huge effort for her to focus in on anything. Around the 18 month old mark, I finally asked the Pediatrician if she had Cerebral Palsy. She not only wasn't walking, she wasn't sitting or even rolling over. He said yes and that it was there in her file, but nobody had ever said anything.


We had Early Intervention pretty much from the beginning. The regular BabyWatch program came to visit me after she was born and when things weren't following a "normal" schedule, we got set up with a Physical Therapist, Occupational Therapist, Vision Therapist and Hearing Therapist. I had people coming to our tiny student apartment nearly every day it felt like!  She got her first real wheelchair at 3 years old, just in time to start special needs preschool. She got a feeding tube at 6 years old because I started asking about one. She wasn't gaining weight fast enough and obviously wasn't always being hydrated enough. We gave her supplemental calories at night to begin with and she ate by mouth up until she was 9 and we started the Ketogenic diet to manage her increasing seizure activity. We eventually gave up on the second hearing aid as she had never shown any hearing in that ear. We also gave up the glasses because she didn’t look through them as much as she looked peripherally around them. When we tried to strengthen the prescription, she wouldn’t wear them anymore, even when we switched back.

I used to wish really hard for twins. I always wanted twins! Heavenly Father granted me the "blessing" of having twins every time I had a new baby. My other babies passed Becca up right around 4 months old, when they started rolling and sitting. She has grown in her own ways and has a special place in our hearts and the hearts of her 4 siblings. She turned 13 on the 13th of January 2013! She doesn't have a reliable form of communication and still needs 100% support to sit or stand. She is such a pleasant, peaceful presence in our home.





I have always felt like Becca was supposed to come to me just as she is. By all definitions, I should have had CMV long before I ever started my own family. I didn't. And as much as I want to hate CMV and curse it's name forever, I have made my peace with it. It didn't take a perfect daughter from me, it gave me my perfect Becca. That doesn't stop me from teaching and informing and encouraging pregnant Moms to know their CMV status and to follow the hygiene guidelines that prevent it from happening to someone else. Go to StopCMV.org and educate yourself! Let Becca be an example and do all you can to prevent it. But please know that we love her just the way she is and that we're okay with it all.



Sunday, February 03, 2013

Weakness: Speaking in Public. Strength: Testimony.

Today I fought a war with myself on the Church bench. I could tell when Fast and Testimony meeting started that I was supposed to go up there. Just that quiet little feeling that encourages us to share our thoughts and feelings. I didn't want to go. I don't like to speak in front of people. I sit there and I think of all these wonderful, eloquent things to say and I get up there in front of everyone and none of it comes out! Now, if you're kind, like my brother, you'll mention that maybe what came out, was what was supposed to come out, and I really hope that that is true. I believe it is, most of the time. I just wish I could get up and say what's in my heart the way it sounds in my head, which is always way more awesome than what actually comes out. And so, here I am, sharing more of what was actually in my heart today. That way, my kids will know that I actually have deep feelings, not just what I'm able to get past my shaking hands and stumbling tongue.

I have been thinking a lot about my youth. My days as a teenager were pretty quiet. I preferred my music in my bedroom to putting myself out there. In Arizona, where I started my teens, I had a large group of LDS friends. I think I've told the story already about what a battle I had to fight to win the privilege of hanging out with them: Conquering (or waiting out) a bully. I had incredible Young Women leaders. They weren't perfect, but they were perfect for me. They bore their testimonies to me in words and in the way that they lived. When I first became a Beehive, Cherie W. was YW president and Vicki W. was my first Beehive advisor. She gave me an apron that I still have... pink and turquoise geese and all! I hadn't been in very long when they switched things up and my Dad became Bishop and the YW president became Tammy B.... oh how I loved her! I first had Sister Greene for a new Beehive advisor and I remember when she got Sealed in the Mesa Temple. I remember when one of the Laurels that I looked up to, Sandy C., sang You Are the Wind Beneath my Wings. She was so nervous and overwhelmed by the Spirit that she could hardly make it through and Tammy was encouraging her from the piano where she was playing for her. I remember a "Through the Veil" activity with our leaders dressed in white and welcoming us to the other side. Before Young Women, when Tammy was our Merrie Miss Leader, we had a goal to gain a testimony. I remember talking about it a lot and feeling very inadequate and expressing to her that I didn't know what one felt like. She was so patient and loving in explaining to me the warm feelings of the Holy Ghost and how little things, little feelings, make up the greater whole of a testimony. It was the first time I could really say I believed in something for myself.

When I moved to Utah just before turning 16, I was pretty sure my life was over! It was a very hard move for me. I discovered that living the gospel in Utah was not "easier" than in other places. It still took a lot of hard work and I learned how not to judge people. I really got a lot out of Seminary. Starting with Brother B. in AZ who taught all day long as the only teacher to Brothers B., P. and C., who were on a team of many. My Young Women leaders in Utah were awesome, too. Sharon R. was our YW president and Sister R. was my Laurel Advisor. They helped me to choose to come to mutual and let me help plan many of the activities. We cooked and served and talked.

I don't need to be "famous" in someone's personal history to know I've made it as a Young Women leader. If they have a strong testimony and continue to add to it line upon line and I can be a part of that, I count myself lucky. If they gain confidence in themselves because they are part of planning awesome activities for their friends in our ward, what a blessing! Looking back, there are SO many people who have touched my life, prayed for me, taught me spiritual lessons, and been there for me when I needed them. More than my limited memory can still name. I want to be that window to the gospel. I want the girls in my care to remember how it feels to feel the Spirit speak to you during a lesson. I want them to lift and guide the girls around them so that they experience the unity and togetherness a great group of Young Women living the gospel can have. I want them to feel valued and gain self confidence as they progress in all areas of their life while anchoring themselves in the gospel.

THIS is what my heart has been full of lately. The simplistic, wandering testimony I said today over the pulpit was only a tiny part. I guess it pretty much always is and that has to be okay.

I know that my Heavenly Father knows me and He loves me. He shows me every day. I know that my Savior died for me and hurts when I hurt and allows me to repent when I need to. I know that the restored gospel is true. I am forever grateful for the sacrifices that Joseph Smith gave and also all of the blessed pioneers who endured so, so much so that I can have the gospel so easily accessible to myself and my family. I know that President Monson is the true prophet and he talks to God and receives revelation for us, God's children. I know that we belong in the Ward in which we live. We are supposed to be right here, with the callings that we have, with our children in classes taught my someone who was meant to be in that calling at this time for my child. I know all of this because my testimony is real and it is mine and the Lord confirms it to me by small and quiet means that are meant just for me. I share this testimony in the name of Jesus Christ, Amen.