It was a good day!

I read an article recently, written by another mom of a special needs child. In the article she wrote about the isolation of this life and it's so very true. I could write the exact some words here and they'd all be true. Do I have it worse than anyone else? No, definitely not. Do I want you to feel sorry for me? No, but sometimes I want to pout in self-pity for the hardness that Rett brings to our lives. Then as soon as I put the period behind that sentence I feel guilty for having written it. There's also a lot of guilt in this life. I guilt myself for not being enough or doing enough, and then for doing too much. For the things the other girls don't get to do, for the things we can't add to the list.

I've read articles where parents said "If the cure was right here, I wouldn't give it to my child. It would change them and they're perfect the way they are." Every time I shake my head and scream "NO!" inside. I want to judge them and think that they're some type of strange misery-seeking individual. I get it though, kind of, but I'd still give her the drug. No question. I read yesterday about the licence deal made between Neuren Pharmaceuticals and ACADIA Pharmaceuticals. Neuren accepted a $10 million dollar deal allowing ACADIA to develop and commercialize the drug trofinetide. The article says that a phase-three trial will happen next year. You can read more here. My excitement is through the roof that progress is being made. Every deal and every company that wants in, builds my hope that this is a good drug that's going to give our girls relief and progress and maybe even cure this thing.

Today was our annual Step Up Half Marathon, Relays & 5k. It's a lot of work to prepare and put on but here I am at the end of the day and I survived. My goal is to raise $5,000 each year. This was our 6th year and we haven't made it to $5,000 yet but maybe next year. We usually donate around $4,000 to Rettland Foundation. Rettland helps those families participating in trials and sends care packages to girls who are in the hospital and to families who are in the trenches. People ask me why I don't donate the funds directly to the trials. I don't because the trials can't happen without these families being supported enough and strong enough to go and be a part. This life is lonely and exhausting and some days too much...way too damn much! So if I can be a little bit of help so that a few families feel like they're not alone, like they have someone out there taking time and energy (maybe even the last bit they have) to give them support, then it's worth it. Also, Rettland is run by an amazing rett-mom who does a darn good job supporting families! (KEEP IT UP COLLEEN!)

I sit here at the end of the day, looking at how my friends and our family came out of the woodwork to help. We had Grandma, aunts, cousins, sisters and some of my few dearest friends who came to work water stations, direct runners, help Ellie walk the 5k, and even sort out the madness of my spreadsheet! I am humbled by the people who come alongside and lift me up in my weakness. God has blessed me beyond measure in this small handful of people.

I don't get emotional about very many things but the race always gets me. Introducing our girl to all 150 runners and telling them a little about her life and rett makes me teary. Perfect strangers coming up to tell me that they're therapists or teachers or doctors is always a highlight of this day. I talked with a girl today who's in medical school. Ellie and I went and spoke to her pre-med class at BVU about Rett a few years ago. She's not exactly sure what she intends to do yet but as she walked away today, I told her the same thing I do to every class we've talked to. "Go cure this thing!" I say it because I really do believe that one of them will!

So today, I didn't feel alone, isolated or in over my head. (Well except for that spreadsheet stuff!) Thank you to all of you that made today possible. Thank you for caring about me and about Ellie.

It was a good day.
Angie

Ellie. No. 11.

"Sale Barn. Grandma. Cousins. Me. No. 11. Sale Barn."

This is typical "Ellie talk." This was her just a few days ago; a combination of verbal words and device words. This day, she was telling us that soon she won't be 11 anymore. (Her birthday is in June but since her sisters birthdays are January, March and April, she's anticipating her own.) She can't verbally say 12 but she can say "No. 11" which is pretty clear. She was communicating (like she has many times over the past month) that she intends to spend her birthday at the sale-barn. Except she doesn't mean that she just wants us to go there. She really wants to have a sale-barn birthday party with Grandma and Grandpa and all the cousins. So yes, she still loves cows and the sale-barn is her all-time favorite place! 

She upgraded her Eco2 to an Accent1400 a few months back. We kept her same LAMP word system, just a new computer that's a little lighter, a little faster and now red. (Ellie's choice.)  She tends to sandwich her message in between "cow talk" so you just have to read between the lines sometimes. She really isn't just randomly hitting buttons. The best way to know this is to spend an hour sitting with her and her device .You'll quickly see that her communication is purposeful and quite intentional. In spite of many "experts" telling me Ellie should use phrase-based communication, we're very happy with what she's doing with LAMP. She's gaining new vocabulary constantly. I'm always using the search button to figure out where the word was that she just said. I think she enjoys saying things that Mom doesn't know how to find. We switched up how she does vocabulary words at school so that she isn't having to learn a word/definition/sentence that isn't in her device. I just decided that really isn't very purposeful if she cannot verbally say it or write it or find it in her device. Let's give her a synonym that IS in her device. SO, since changing that we've got all kinds of new words popping up! It's great! "Disagree" is a favorite lately, though she did add "agree" this week. Of course being a pre-teen, she'd rather point out that she disagrees! 

She has grown enormously! She's presently just under 100lbs. and about a foot shorter than me. It's getting more and more challenging to "make her" do things that she doesn't want to do! (Brushing teeth, shaving, etc) 

She still likes to go to bed by 8pm and falls asleep almost instantly. Of course, mornings are still her favorite. She gets up by 5 most mornings and sometimes much, much earlier. My rule is she has to stay in bed until 5am, but it just doesn't always happen. Praise God she can grab her ipad and get onto youtube to listen to math videos or read alouds. Those teachers and grandmas deserve some kind of award for taking the time to record and upload all those! Seriously life-saving and sleep-giving to me!! Her new next-best youtube videos are people eating and videos of food noises. It's strange really...not so much that it interests Ellie (she'll watch goats or cows chew their cud for hours!) It's strange to me that people video themselves eating and making food noises and post them on the internet. These we could all do without!

Ellie still loves school (She's presently in the 3rd grade) and Mrs. T who has been her aide since kindergarten. The bond they have is a saving grace for me. It's not easy sending your child to school, let alone a child who can't tell you about their day very effectively, and a child that has to have help in the bathroom. So, having someone that she trusts and that I trust is a mercy from God. I don't know what we'd do otherwise. We have retained Ellie a couple times to give her more time to work on communication and being able to demonstrate her learning. We've been lucky to be able to move her at a pace that's best for her! 

Ellie developed a scoliosis curve last year that we're watching for changes. She gets another x-ray this month to see if it's changed. Our prayer is that it hasn't changed and that we won't have to have any intervention. 

Ellie's greatest frustrations are people who clear their throats, hiccup or burp. She's hardest on her family, as usual. Little Esther will run to me and whisper in my ear that she has the hiccups, we then rush her to the other end of the house than Ellie. She does have super-sonic hearing though and we rarely escape her wrath when it comes to the hiccups. 

Generally Ellie is a happy girl who loves us all. She frequently pulls our heads into herself for kisses or hugs, albeit sometimes kinda roughly! She really doesn't know her own strength! She loves animals and being the boss out in the pen. She's a great goat-tamer!

So that's our long-overdue update! I hope you're all well and blessed. 

~Angie

1 Year Cancer-Anniversary

I'm often amazed at how a length of time can pass and it seems like an eternity ago and yesterday all at the same time. One year ago today, I had surgery for thyroid cancer. I had no idea then what the future would hold. I was terrified of surgery itself and perhaps even more so of cancer. I saw so much goodness in the world through people caring for me. I had friends who brought food, came and cleaned, folded our laundry, kept me company while I had to just sit! I even had a friend who came and helped me squeeze down and drain my tube -- now that's a real friend!

A year later, I feel like I'm mostly recovered. Though I thought it was almost impossible then, I feel like I've regained my strength. Nicholas and I were just reflecting on my time in the hospital having to have help to sit up. How I got stars on my white-board for walking 10feet down the hall...two stars if I sat down at 10feet and then was able to walk back to my room! Laugh! Amazing how God created our bodies to heal themselves and recover. In the past year we've rehabbed two houses, sold one and rented one. I hung (with a little help) over 90 sheets of sheetrock. We've made some big changes, including Nicholas quitting his day job to work full-time with me on rentals. We've made an intentional step towards taking nights and weekends off and enjoying life because you just never know what's ahead. We're making plans for 2017, which include more projects balanced out with more fun and rest.

It's Christmas time now and as we're preparing for this season, I'm grateful. I'm grateful to be here, enjoying our girls, this life that we've been given. Grateful for God's provision and resting in the fact that he knows every single day we will live before we were even born. I find solace and peace in that truth. Have a very Merry Christmas.

~Angie

Living with Grace

Grace means getting something you do not deserve. 

Grace is a concept I didn't grow up with, yet something I'm trying desperately to teach our daughters. Something I long to understand and to live. I ordered a 3-pack book set on mothering probably a year ago. Included in the set was a book called, "Grace Based Parenting." I wish I could tell you more about the book but I've honestly not read it in it's entirety, yet. What I did read triggered the desire within me to learn and teach grace. 

Having grown up in a family where you built your worth by working hard, grace is somewhat of a foreign language. I grew up attending church, hearing the word "grace" but never really understanding or feeling it. As I've fumbled through what it looks like to live with grace, I have noticed that grace stands out. It's unexpected and shocking to be the recipient of something you don't deserve and haven't earned. I grew up thinking something like that was cheating, slacking, being lazy. To lower yourself to the level of accepting something that you didn't work for or earn, was embarrassing. 

It makes me think of little children and how easy it is to have grace with babies and toddlers. It's easy to hug them and kiss them, even though they do not express the desire for your affection or give the same in return. It's so simple to shower them with unearned joys; books and toys, time and attention. I think of how much harder it becomes (at least for me) as they get older and we balance the concepts of grace with responsibility, consequences, and work ethic. 

When I think of the life Jesus lived here on Earth, I think of the grace he lived. I think of the miracles he performed for everyday, undeserving people. I think of the provisions he gave to those who had need. All grace. When I look at the amount of time Jesus spent showing grace compared to having good work ethic, I think overwhelmingly is his example of grace. Since he was pretty intentional about his time on Earth, I kinda think it was on purpose. 

2 Corinthians 12:8-9 Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

May we all live life with more grace.
~Angie

As it sits today, I'm writing this update as a cancer survivor. I was diagnosed on December 9 and had it cut out of my body on December 15. I'm short a thyroid and 28 lymph nodes (turns out I'm just fine without 'em.) I'm nearly a week into the healing process and I'm not sure that the reality of life has caught up with me. I still have a tube draining my neck into a little bulb that I have to empty and measure. I wait for the day my output is less than 30cc, so I can have it removed. So in case you're wondering (like a lot of people are.) My doctors have no plans for further treatment. No chemo, radiation, radioactive iodine, etc. They feel confident they were able to cut all of the cancer out. People are sort of tip-toe around me and conversation with some is awkward...then again, that's not really new. It feels so surreal to be the patient, to be talking about me. Especially having been at hospitals and with doctors that normally would be treating Ellie. Proof God has a sense of humor and an even bigger sense of provision. 

In some senses I've always felt like a sparrow; small, insignificant, self-reliant, able, and thrifty like the little birds that build their nests from this or that in the most random, farm locations. I've felt forgotten and ignored but also loved and included. I've read the verse about how God provides for even the sparrows. I've known triumph, struggle and defeat; in full measure. Now, in this season I feel most deeply the provision, the care and the LOVE that God has for me. Never before in my life have I truly FELT the provision and love of God like I do now. I've seen his people at work, I've felt them jump into action at disaster. Today though, it is different. As I look at the entire context of the past few weeks, there is no logical or medical or social explanation for the timeline of events, the insight given in advance, for the memories at perfect moments , other than the Holy Spirit. It's too much to explain away or count to chance or luck or any other such thing. It's only feasible that Someone went along, years in advance of this last month and made plans; arranging the details that needed to be in place. This has given me such a great sense of His Holy, perfect ways. It has made me grateful. What an amazing Father, that I have. One who loves, cares, and provides, One who forgives, comforts and heals...me. 

I am blessed.

Really Good with Crazy Low Odds

Today is Thursday December 10. It's 2am and I've been up for two hours. I can't sleep. I designed our Christmas cards and ordered photos of our beautiful girls, from the hotel lobby computer. Then I decided I should prepare this blog...to save for posting in a couple of days. (I know I'm someday going to want to read back my thoughts from this day) I've been sitting here looking at this empty page for some time now, wondering how I even begin. So I'm going to just lay it out there.


Nicholas, Esther and I have spent the past 2 days at Mayo Clinic. A place I'm quite familiar with and fond of. Amazing experts behind every door. It feels strange though, to be the patient. In the last 48 hours I've had appointments, ultrasounds, a biopsy, and lab work.


Less than 12 hours ago I recieved a cancer diagnosis. I turned 34 last week. To say I'm in shock is probably an understatement. He walked into the room and said, "It's going to have to come out. It's full of bad stuff." As he slid into his chair I questioned exactly what kind of bad stuff. "Nothing good." he said. "Cancer" I asked. "Yes" he said while nodding his head. I sat biting my lip to help maintain my composure. Alternately shaking my head "yes" to acknowledge his words and "no" to try and deny them. He smoothly transitioned into the positive outlook of surgery and the highly likelyhood that they'll be able to just cut it all out and be done with it. After giving us the diagnosis, I was handed a stack of reading material. A little book titled "Thyroid Cancer" was on top. In the "Thyroid Surgery" book, my doctor circled the portion where is shows a total removal.

There are so many words swirling in my head from today. Hypodense, irregular, highly suspicious, cacification, and papillary carcinoma. I have timelines and prognosis and potential treatments, all new today. I have questions, a lot of questions, starting with how and why and what.


I have a schedule of appointments and a vague timeline of how this will go. Tomorrow will start with another ultrasound to determine the staging. Basically, that will help my doctors decide if the cancer has spread to my lymphatic system or any tissue surrounding my thyroid. After the ultrasound, I will meet the surgeon who will explain to me the details of the procedure and schedule my surgery. I will have surgery before the end of the year to remove my thyroid and the cancer it's holding.


I cannot say enough how absolutely thankful I am for His proding, giving me the feeling that I needed to come to Mayo for this. So many things fell into place in order for me to be here at Mayo this quickly and to recieve such fast and expert care. Only God could arrange all that happened. I am so thankful for his provision!


I sat in the hot tub at the hotel tonight watching Esther splash on the edge of the pool. The first tears of today came thinking about how quickly 5 years goes. How in 5 years, she'll only be 6. They measure all prognosis based on 5 year suvival rates. (Which are really really good for thyroid cancer! I mean if ya got to pick which kind...it's probably top 10 of the list.) I don't know the number of my days but I know I want to live to be really really old. I tear now thinking of the worry my girls will have and carry when we tell them. (We're waiting until we get home.)


I know that the One who holds my life in His palm is the same One who knew every day of my life before I was even made. I find peace knowing that this is the path my God has for me and that He is and will continue to be my perfect Father right here at my side.


On a lighter note...Nicholas and I were discussing the probablility of one person experiencing a tornado, a child with rett syndrome and cancer before age 35!? We decided we should play the lottery because apparently we're really good with crazy low odds!


So friends, please pray for me and for my family.
~Angie

"She believed she could so she did"

"She believed she could so she did." 

Those are the words imprinted on the copper pendant hanging from a necklace I have been wearing all day. A gift from a woman who's lived these words this year...recently finishing her first marathon. 

I think I've probably been "spirited" always, partially by DNA and partially by the journey that's been my life. I don't give up easily and once I've spoken something I feel obligated to follow through. People ask me often how I know how to do various things and I always tell them that I just figure it out. Sometimes I watch someone else first, (even youtube sometimes,) sometimes my husband and I tackle things together. I've never really stopped to think why I can/do and why others can't/don't. I really have always believed that nothing is too hard to figure out, I mean if other people can do it, so can I. I have a saying that I can do something 3 times myself (essentially...mess it up twice) so long as I get it right the third time it's still cheaper and FASTER than a contractor! I think the key isn't being confident, the key is letting myself off the hook. Giving myself the "do-over" option has allowed me to give myself the grace needed when I have to do something again. That grace has given me the experience to see that I can figure things out, even when they're new. 

I wish every girl and every woman out there came equipped with this message inside of them. (okay the boys/men too - but we women understand how this is a real struggle for us!) I frequently recite Psalm 139:14 to myself when I'm in the middle of a hard run, or when I get stuck on something in a project and start to doubt myself. The verse says, "I praise you for I am fearfully and wonderfully made; Marvelous are your works, and that my soul knows very well" That message of confidence, of assurance is so amazing. In spite of how I've been broken and damaged and sinful and judged, my GOD made me in HIS image. He sent his son Jesus...for me. I owe Him all and so I really I can't go through my days crippled and broken. I go through my days believing that I can move beyond anything through grace. Believing that I can work in the messy and broken parts of houses and lives and, in spite of me, God can be glorified in it all. 

Let me tell you how I feel about puberty...

like it's a swear word! A nasty condition. A dreaded...incurable something. Aghhh! We have FOUR daughters. Yes...really. With our oldest turning eleven this year we've slowly been easing into this territory, while biting our nails and shuddering at the thought of becoming parents to a pre-teen.

Last week Ellie was digging at her armpit constantly. I thought initially it was that her sleeve was a bit tight and bothering her, an annoying seam maybe. Upon closer inspection I found a few dark, long hairs! I nearly hyperventilated on the spot. I mean, we've been warned that girls with Rett often experience early puberty (which just makes it all that much more of a nasty syndrome!) Like a lot of things, I chose to believe that it wouldn't be that way for Ellie. She's ONLY 9! Shaking my head right now because really I still can't believe how I sometimes just stick my head in the sand. She's gained like 15 lbs this past six months, grown nearly a foot and is filling out to the point that she doesn't look like a little girl anymore. Her dad and sisters have been complaining all summer about how stinky she gets when she's outside playing and getting sweaty. It's hard on this momma and in spite of my trying to ignore the obvious, things aren't heading in a direction I want to go.

Now, in all honesty puberty isn't terrifying to me with our typical girls. I mean, it's inevitable with all of them. Something just seems completely unjust and wrong about Ellie going through puberty at all, let alone EARLY. I mean we JUST got the toilet training done the summer before last. I still complete all of Ellie's personal care for her because she can't independently bathe, dress, toilet, brush, etc. I was thinking she'd stay looking like a little girl till she was like 20 or something, maybe until they get the whole cure thing figured out. Sigh. It's so strange how it's happening so fast for her, like a switch got flipped and she's suddenly...very suddenly growing up.

I have so many fears about this and a lot of anxiety about how this all plays out. My first reaction was "is there a med for this?!" (and I hate meds) and then my next thought was "maybe something that could just buy us like say 10 years?!" and then "let nature take it's course" and then "but rett has hijacked her body...this isn't natural...it's rett" then back to the "just make it stop!"

I mean, it's all fine when as a typical mom I had "the talk." I've done that, and I thought it was hard but honestly, that's doesn't seem so tough anymore. I'm thinking about shaving, periods, cramps, bras and a grown up body for a girl who doesn't even like me washing her hair. The girl who removes her clothes if they get wet, regardless of where we are or who's around. The girl who only poops at school if it's an absolute necessity and if either I or her aide of 3 years is with her. Toileting is one thing, but I'm thinking about how she's going to have to have help with pads or tampons at some point; at home AND at school. That's just a really really tough thing. I'm fearful of that and I'm her mother. This world feels very wrong and unjust in the scope of all this.

Sometimes I'm guilty of looking around at parents of typical kids and wanting to scream at them how easy they have it. Though I know better, sometimes Ellie's easier than a typical kid! More than once, I've heard people talk about their kids growing up and getting more independent and felt frustrated and alone. I've been part of conversations that include the line, "when they kids are all out of the house" and disconnect. In my disconnect, I think about never having to suffer the "empty-nester syndrome" and getting to spend everyday with someone who loves simple things and is perfectly content and satisfied in who she is. Life is like a venn diagram...there's some overlap in the middle of our worlds. Yet, we all have that part of our circle that's just us. The part that God has set out just for us, some to grow us, some to bless us.

So big!

When I read all the Rett data initially, I didn't expect Ellie to get big. I expected her to stay small and dainty and frail. Well, she's not! She's all of 70lbs right now and I think the girl has grown a foot this school year! She's filled out so much that I've cut the whole milk out of her yogurt and started replacing it with 2% milk.

I'm so so very thankful for a few key pieces of equipment...first her carseat! We got the Tomato seat this past fall so we've had it about 6 months now. It's amazing. She fits in it and it supports her body for her when she falls asleep in the van. No more issues with breathing or vomiting when she falls asleep! It is still an incredibly overpriced and HEAVY piece of equipment that took INCREDIBLY too long to get...but I'm very VERY thankful for it.

Secondly, last week our grocery store got a new shopping cart! *We did pester them quite a little bit* It's a pretty sweet ride for Ellie! I've been struggling for about a year now to get her into and out of the little kid seat in shopping carts. It's not such a big deal most places because, well, I really don't shop anywhere but Fareway. Food is the only thing I can't really buy online...or don't want to buy online! We asked for the Caroline's Cart but the store opted for a more versatile cart that allows the rider to face forward. Makes a lot of sense from their end. It looks pretty much like the carts you can drive, except that it's a push version. I used it for the second time today and it is so nice! If I owned that puppy...I'd have to make some modifications (like adding an infant seat on behind the chair) but really it's amazing the difference a comfortable ride can make. Ellie was all smiles today in the grocery store, which is rare...so very rare. Thank you Bryan!

We're working on some independence this summer. Ellie has some chores and she's earning tickets for them. Tickets can be spent. Ellie uses her tickets to buy computer time (youtube videos of cattle...yep really.) I explained the ticket-system to her on Thursday. I stood in total shock when she went right to putting ALL the books from the living room and her bedroom onto the bookshelf. I gave her minimal prompts and she was so excited when she finished and got her ticket. She ran to her little jar, twisted off the lid and popped her ticket inside it, bouncing off to take the laundry to the hamper. I said, "Emma, you've got to see this." so many times that she said "yeah mom...wow...ellie's doing a chore for once." in her most enthusiastic voice. Emma wasn't nearly as amazed as I was...but why should she be surprised, even she will do chores for tickets! Ha!

Summer usually means lots of behaviors for Ellie. The unstructured time, the sisters in her bubble, extra noise, heat, etc. all build up for her. We've had lots of hits, pinches and scratches and it's in those times that I have to remind myself how grateful I am that she has the ability to use those hands! (I think Eva is the one that wishes Ellie couldn't use her hands. She's the one that suffers on this point. Thankfully God has shaped her into a forgiving and grace-filled child.) On the other hand, I wish we had a behavioral therapist in the area!! Guess we're going to have to start a behavior chart?! She's loving having time with her animals and it's where she'd stay the entire day if I didn't force her to come eat, drink, read, etc. I'm so thankful for the words and writings of Temple Grandin. I feel like Ellie has the same kind of connection to animals that Temple does and it's so nice to be able to hear what Temple has to say, it gives me a little insight into what Ellie may feel/think.

Yesterday Ellie was using her "talker" after dinner and suddenly said "love" and then pointed to herself and said verbally "me Ellie" and then "momma." It was the first time that she's ever spontaneously talked about the love between us. Take nothing for granted. It melted my heart.

Ellie's loving being a big sister to Esther. She loves tattling on her, when she's climbing chairs or she's pooped. Ellie comes hauling her to me in this 'held away because she may be stinky' kind of way that cracks me up every time! We wondered how Esther would do with Ellie, how they'd figure each other out, but they have. Esther signs nearly everything that Ellie signs and in the same modified signs that Ellie uses, which proves she's watching Ellie more than she's watching me! I sign the "correct" sign to Ellie and she always signs her modified signs to us. She understands the signs but she's just changed them to make them easier. It's so sweet watching Esther learn words from all her sisters, including Ellie! Oooh and Esther "mooos" which makes Ellie so very happy. When I was pregnant with Esther, Ellie kept hoping I was going to deliver a calf. Maybe she's not so disappointed in Esther now! ;)

Ellie turns 9 in 11 days! I can't believe she's already turning 9. We're having a sleepover/camping party with family and friends. We're all looking forward to it, especially Ellie. She loves introducing people to all of her animal friends! It's going to be a fun weekend celebrating everything that Ellie loves!

Thanks for reading our update!
Blessings,
~Angie

The Pit of Self Pity...Jesus Calling

 

Since the beginning of the year, our six year old Eva, has been reading us a devotion each night at supper from her new book. The book is by Sarah Young and it's called Jesus Calling 365 Devotions for Kids. (We're loving it!) It always starts with a verse and then a little devotion follows. I want to quote from it...

 

 

This was the devotion for February 23.

"So let us run the race that is before us and never give up." Hebrews 12:1

It's easy to feel sorry for yourself - especially when things aren't going your way, or you feel like everyone is against you, or you are just plain tired of trying so hard all the time. But feeling sorry for your self is one the devil's favorite traps. Don't even go near it! Once you fall into this trap, it's very hard to get out again.

 

This devotion really struck me, or perhaps convicted is the proper word. I've read the verse before, I've underlined it and written it on little note cards under the "persevere" tab of my little verse binder. BUT I've never considered self-pity when reading it. The more I consider it, and think about the meaning of "give up" it makes sense to me. If giving up isn't an option, then what use is there to feel sorry for myself? Accept the pruning and use it to allow new, fresh growth.

 

At the end of the little devotion are two more scriptures for further study. One of those is in Hebrews 12.

 

Hebrews 12:2-4

"Keep your eyes on Jesus, our leader and instructor. He was willing to die a shameful death on the cross because of the joy he knew would be his afterwards; and now he sits in the place of honor by the throne of God. If you want to keep from becoming faint-hearted and weary, think about his patience as sinful men did such terrible things to him. After all, you have never yet struggled against sin and temptation until you sweat great drops of blood."

 

 

I went ahead and read on through Hebrews 12 and found this verse...

 

Hebrews 12:12

"So take a new grip with your tired hands, stand firm on your shaky legs, and mark out a straight path for your feet so that those who follow you, though weak and lame, will not fall and hurt themselves, but become strong."

 

 

The thing is, I know there are times when I DO feel sorry for myself. I have tantrums and throw fits and even get angry about the "race that is before us." I want so badly to have control over the way things go. One would think that after all this time and all that God has carried us through, I'd be totally over it, submissive, turned over to Him in faith... but I know and He knows, I'm not. I'm working on it, but haven't arrived to say the least. It's been a long, hard winter for us and I've been feeling weary. Then on Tuesday, we had to say goodbye to our dog, of 14 years, Oreo. I don't think it's coincidence that we read this devotion the day before.

 

I'm spending lent in study...I'm reading "Unveiled At Last" by Bob Sjogren. It's good, pushing me to think about the goal of our faith. I'm certain this is part of God's preparation, I feel pruned, ready for spring and new growth.

 

~Angie



Gillette and the EKG

There are days when I feel as though life just knocks the wind from our sails. It's always surprising, sudden, catastrophic even. It shouldn't be though. I mean if life were all sunshine and lollipops well then we wouldn't have reason to grow, learn, and persevere through hard stuff to become better people. Yesterday, the sails were full. We spent the morning at Gillette Children's Hospital meeting Ellie's new team. I drove us home thinking how blessed we've been to always find our way to the right place at the right time. I feel (present tense intentional) confident that God is on our side, that as he has promised, he's gone ahead of us prepared the way and IS in control. I feel that still tonight, even after the wind is gone from the sails and the masts have toppled into the sea. 

Late this afternoon, Gillette called to give us the results of Ellie's EKG from yesterday. We've had EKG's to monitor the health of Ellie's heart before, at Mayo. Our last one was in the fall of 2012. I learned today that at that time her QT interval was borderline prolonged. (It pays to have experts in Rett examining these tests...nobody at Mayo told us it was borderline.) I also learned today that while in the fall of 2012 it was 442(borderline), yesterday it was 485(worse yet.) At 500 it is no longer considered borderline, then it's considered Prolonged QT. Our new pediatrician feels that considering rett and all it's nasty impacts on the body, that we don't have much choice other than to keep a close eye on this. I asked the nurse on the phone what kinds of symptoms we should be aware of with prolonged QT, thinking perhaps there would be warning signs that it's gotten worse, etc. Her response was "Well it can be fatal." I'm just guessing here, but maybe the silence on my end gave her the idea that she'd perhaps gone a little too bluntly on that response. She followed it up by telling me that heart palpitations and irregular heart beat are typically symptoms of prolonged QT. Really a bummer that Ellie can't really tell us if she were having any of these symptoms! :( We go back to Gillette in 6 months and we'll continue to monitor her QT. Our nurse said that if her QT were to be more than 500, they would likely look into medications that could help shorten it. 

It seems like just when I think perhaps we have a handle on life, we realize all over again that we really, really don't. Thanks for reading, praying and supporting us on this journey. 

~Blessings
Angie

Super Mom??

I've heard this term thrown around lately, a couple of moms have called me "super mom." I usually laugh and say something like "yeah right." Honestly though, I feel the need to set the record straight.
What I want to say to the woman who just called me "super mom" is this...

You weren't here tonight when she refused her supper, shoving it across the table to me screaming only seconds after I set it in front of her. You didn't see me sigh REALLY big because it's the end of a very long day that started at 5:30am. I really would like to just coast from now until bedtime. If you were here, you would have seen tired in my eyes and in my spirit. I'm pretty sure "super mom" doesn't get weary.

You probably wouldn't approve of the yelling I did to FINALLY get my girls into bed either. Hmmm. Or that while I was giving the baby a bath in the big tub she toppled over and I was just a second to slow in my catch. I snuggled my naked, wet, little peanut though, and kissed her bumped little head (that might be the most "super mom" thing I did today.)

Unfortunately, my 'super mom' moment ended when I found miss "I don't want my supper" eating a bag of puppy chow...on the couch...covering herself and said couch...with puppy chow. As I drug her to the sink for a complete scrubbing, I lectured her on where we eat and what she is allowed to eat. I'm sure 'super mom' would have a better way of convincing than the scolding I did.

I caught myself wallowing in self-pity for a bit there in the puppy-chow moment. It started simple about cleaning up chocolate and powdered sugar from the furniture and little hands and face. It got complex quickly, thinking about five years from now...probably still cleaning puppy chow from bigger hands and face. Thinking about how to curb the pinching, kicking and scratching before then.
I'm betting 'super mom' never stresses or feels sorry for herself.

About the time everyone started to settle the oldest asked me if I wanted a hug. It caught me off guard because I thought she was about to ask for one my thing to extend bedtime and I almost said no, before quickly saying YES! What a great thing to ask your mom! Then, while I took one potty, I listened to another one singing to herself in her bed. What a sweet heart she has, I thought to myself as she sang a song about Jesus that she's heard on klove.com. I sat down to nurse and snuggle the baby and listened as she sang for about twenty minutes until she drifted off to sleep. I thought about this girl and how God has really used our totally out of the ordinary life to shape these precious girls. I'm setting her thinking how each one is being prepared for a special purpose and calling that God has set before them.

You know what I think, it's those last moments before bed. It's the hugs and snuggles and stories and listening that make a woman 'super mom'. Those are never the moments when I hear this. It's the busy, here and there, doing WAY TOO much moments that I hear the words 'super mom' and I think that's just totally backwards! So just so ya know...I was 'super mom' today but it definitely wasn't in the moment that you saw me in!

Fall 2014

The last time I posted here was just prior to the Step Up Event. Seems like so long ago and yet I'm just finally wrapping up all the details from the event. We raised about $4300 for Rett Research (Girls Power 2 Cure)! I'm so grateful for the people that supported the event and who donated their own hard-earned money towards Rett Research. Amazing.

A lot has been going on in our corner of the world since the race. We purchased another rental house and then decided it'd make a better "flip" than a rental. Esther and I have spent the last 30 days working on it. We're blessed to have such a happy, easy to entertain baby! If you've been past and seen me doing the song and dance on the roof, in a lift or out in the yard... I promise I have not lost my mind completely...it's baby entertainment! It's been so much work but it's so rewarding to see each piece come together! I can't wait for it to be done and have a few days to do the normal things 'stay at home' momma's do!

Whenever we work on our houses, we always try to employ our renters. It's part of the project, part of the goal. This time around I have Lui helping me. Lui lives in one of our houses with his brother and family. He's lived in the US for a few years, originally from Micronesia; where he farmed bananas and yucca. I wish I knew more about him but this is pretty much all his brother told me. He can't tell me anything more about himself because he's deaf and doesn't speak. Lui uses a form of sign language but it's "Micronesian sign."  From what I can understand, he was born deaf and since coming to the US has not been able to work. His brother told me that in Micronesia he never was inside. I cannot imagine what that must be like for him to come to the US and be trapped inside indefinitely with no hope for the future. I got Lui started working on the house they live in because he was always coming out to watch me work (which doesn't work for me! If you stand around, I put you to work!) One day I'd just had it and so went and got him a paint brush. I motioned for him to follow my lead in painting the foundation of the building. When we finished that job, I showed him a couple more things to do around the place. By the next morning he'd finished those! He loves to have something to do, which I totally understand! It's so fun to see his joy in working, in learning to do a job and completing it. He loves having my thumbs up and makes a point to show me each part he's completed. A lot of being around Lui is not so different than Ellie, in that I have to read his cues and facial expressions to guess at what he wants/needs. Sometimes we don't understand each other and we just have to leave it at that. The other day while we were mixing concrete, Lui was humming/singing to himself and it got me thinking what must it be like to try to make music when you've never heard music?! I wonder what it'd be like to live in a silent world. I really enjoy seeing Lui feel useful, giving him the satisfaction of having work to do, and the ability to earn his own money. I think that's something too many American people take for granted! I've thought so many times how I hope one day someone will give Ellie opportunities like this. It's not always the path of least resistance that we're called to. God puts people in our paths not only for us to serve, I've found often times He's also using them to work on us.

Speaking of using them to work on us...
Ellie's been working on my sleep issue lately. The base issue is that Momma needs sleep and Ellie does not. Apparently her system is telling her that anytime between midnight and 4am can be morning, totally her choice. This has been going on for a few weeks now. She doesn't seem to go back to sleep when I put her back in bed, usually talking to herself or saying 'momma' and tapping me every few minutes. With a baby AND Ellie in the house, sleep is a luxury this momma would like more of!

School conferences this week for the girls! I'm so pleased with all three of the school-girls and anticipate great conferences tomorrow. Ellie's been using a label-maker to complete homework and in-class work. It's nice because she can type things out and just print it on the spot on a little label sticker. It's a great idea except that she needs help peeling the backing from the labels b/c it's so tiny. She's doing so well sounding out words and phonetically spelling them. I love seeing the inventive spelling on her work! It's funny the things of hers that I'm keeping as keepsakes this year. I love seeing her own "writing" on her work. Something I take for granted with the other girls. I only wish we could get her communicating using her device more! I know she has SO MUCH in her head --- I want her to be able to get it out!

Baby Esther is 7 months old already. Crawling, sitting, beginning babblings and waving are filling her days. She's such a happy kid, amazed to sit in her bouncer outside watching squirrels, birds, leaves. She reminds me to take in the beauty of fall. She'll lay back in her playpen just watching the leaves move in the breeze, giggling. As Grandma Marilyn said in a letter to Eva this week, "it's so special having a baby in the house, everyone just seems happier." This is so true, the little things become amazing all over again when a baby does them.

I pray this update finds you all well.
Blessings to you.
~Angie

Life at breakneck speed...

Wow. Another school year is about to begin. I'm in awe of how the summer has flown by and how this year really is coming towards it's end. I'm sad for things that will be missed and for our summer freedom (while not really all that free) is coming to an end. Ellie & Eva will start first grade (in separate classrooms but in the same school.) My few years of teaching were in first grade at South and I remember fondly the happy progression of those little people. I can't believe our girls are about to embark. It makes them seem so big, and really they are so big!

Perspective I say, is an amazing thing. In March we welcomed our newest peanut, Esther Clara. Having a newborn and "big kids" is amazingly easier than having a newborn and little kids! Whoever said two years apart was the ticket -- they lied! It's actually the 6 year span that's perfect! We've been so delighted by the smooth transition from a family of 5 to a family of 6. Seriously, once you're outnumbered it's a wash! Really though, all of our girls LOVE being little mommies. Ellie despises a spitty face and is diligent about wiping Esther's face, much to her demise. She actually doesn't mind a spitty face! She's getting to the ripe age of  5 months, where she's going to let someone know when they've wronged her! What a joyful baby though. It's amazing to see how God gives each their unique personality and preferences. Esther LOVES music and bounces, laughs and dances in her bouncer, while Eva accompanies her on foot circling the bouncer. Ellie doesn't enjoy the song and dance in quite the same fashion and usually watches from a far off spot with hands over her ears. Emma loves the piano and is learning new songs at lightening speed! I'm thinking if our girls ever start a band, Ellie can be the one in the sound booth with the ear phones running all those BUTTONS!

Life is good. Even though there are never enough hours in the day or days in the week, we're learning to enjoy and embrace those that we have!

As we look towards school starting, I started thinking about lugging all that "Ellie-stuff" into school. For the first time actually looked into a handicapped license plate. That's a really permanent and visual thing, that we've avoided until now. When Nicholas and I talked about it this week, he was totally supportive of the idea. It just makes sense he said. So, tomorrow I'll take my papers and drive down to our courthouse and pick up plates with the little wheelchair logo. A lot of my friends have the little cowboy for the cattleman's club or the apple for the teachers, those are all demonstrations of their support for those clubs and groups. This is a club I'd rather not be a part of and I guess have tried to hide in, until now. This year it's become clear to us that people know. We've been through all the phases, every book calls it something different. I think perhaps, now, we're moving towards acceptance.  Acceptance ... and expectation.

In a little less than two weeks, I will put on the Step Up race. This is my third year coordinating the event. What started as the desire to keep the event alive, has now transitioned to a fundraiser for Rett Research. This year 100% of the profits will go to Girl Power 2 Cure, a charity dedicated to CURING Rett Syndrome. I like the sounds of that and that's something I'm willing to work for, to expect. We pray with our sincerest hearts that one day, a cure will come to unlock our sweet girl. I tear, thinking about the things she'll have to say when that day comes. So, if you're a friend or family, or close by come join us in a race for a cure. Half Marathon, Relay Half Marathon and 5k Events. August 30, 2014 Starting @ 7:30am King's Pointe Resort.
Register or donate here... www.stepupstormlake.webs.com . We can't thank you enough for your support!

~Angie

Overcoming...Take that Rett!

I'm listening now to Mandisa's song "Overcomer" and it spurred me to come blog. An update is definitely long overdue. I find that we're already almost to November, fall really is beautiful in this part of the country. In spite of that sinking feeling that the snow and winds will soon be swirling outside, we have joy in the season we are in.

Ellie had a summer of change, of growing up, of putting things behind us, in the most joyous way possible. Not to say that change doesn't come hard, actually, really, really hard. We decided to learn how to use the toilet this summer. No small task for a girl who's body isn't 100% obedient to her commands. No small task for a daughter, equally as stubborn as her mother. Probably the most trying times we've had in our 7 years together, were had this summer. I can smile and laugh about it now, because we won and that made it all worth it.

Ellie has learned to use the toilet all the time, which is nothing short of a miracle. A blessing straight from God, really. We are overcomers! Whooo hooo! (Yes, I say that with a fisted arm-pump!)

Ellie also learned to ride her adapted tricycle, independantly. She rode 2 miles one night and followed that up by being the STAR of the 4th of July parade on her bike. I am so proud of the way she's overcome her body. So proud of the way that she's kicked Rett in the teeth and learned to do what she "shouldn't" be able to do. She's now showing her little sister what kindergarten is all about. Eva's flourishing in kindergarten, especially with such an experienced and competent guide. We requested that Ellie stay in kindergarten this year to work on her number sense and give her a little more time to develop her math skills before putting her into first grade. This means that Ellie (who's 7 now) and Eva (who is now 5) are both in kindergarten. It's been a great choice. We feel so so blessed by the women God has placed in this environment for both our girls. Emma is enjoying the freedom. flexibility, and one on one time of being home-schooled for 4th grade.

The girls are all having a great time announcing to anyone who will listen that they're soon going to have a baby in their house! We're due March 17 with baby number 4. :) They got to watch our little one on the ultrasound and take home little keepsake pictures. Ellie keeps reminding me of saying "mama mama" and pointing to my (growing) belly and then pointing to her feet. One of the pictures from the ultrasound clearly shows our little one's feet and toes as if pressed up against the screen. It's had an impression on her. I'm praying she's at doting once baby arrives, as she is now!! She's not known for her gentleness.

So much change in such a short time. All blessings and all things to be thankful and joyous about! I pray your fall is equally "full."

~Angie

From the Ashes

Today's a special anniversary for our family, which means I should blog right?! I mean it's only been like 6 months!

On this day two years ago we were still reeling from the tornado, staying with my husbands family trying to get a grasp on what we were supposed to do. Just thinking about it makes me feel a little bit nauseous. I remember the phone call. It was almost bedtime for the girls, I remember Nicholas answering and passing me the phone. I quietly retreated to my in-laws bedroom for privacy and he went out to the living room to entertain the girls.  Dr.Renaud knew about the tornado though I don't remember how she knew. She played a sort of guessing game with me as to what I thought the results of Ellie's genetic test for Rett were, which I thought was strange at the time (actually I still think it was strange.) I tried to convince myself that they must be negative since she was being so lighthearted about it. I remember her apologizing just before she told me the result was positive, saying how she knew it couldn't come at a worse time. I'm not sure how but I held myself together. I asked questions, scheduled a visit for the next week to discuss the diagnosis and prognosis. As I hung up the phone I sunk into the corner of the bedroom and the flood of tears began. Nicholas was on the other side of the wall, his entire family just steps away, our girls...our Ellie playing just outside the bedroom. I felt so alone, so isolated and forgotten. The information I'd read spun in my head reminding me of the "phases" and the future prognosis. I was so literally crushed in spirit. April 2011 was definitely a time when we "fell into the ashes" as the song below says.

Since 2011, we've "made a new beginning." We launched ourselves into cleanup mode literally and emotionally. We have spent the last two years working with specialists, therapists, doctors, teachers and parents to ensure that we're doing everything we can to maintain Ellie's good health and to push her to achieve new milestones.

In the last year, Ellie's learned to read and spell words. She can successfully match words that she's practiced making to pictures showing us that she can read the word and understand it's meaning. She's made wonderful progress using her speech device (EchoPoint2) and routinely tells us how she's feeling. (We're beginning to remember the "spunk" Emma started to display around this age!) For example, telling her PT (as she entered the room) that she was "Done...Ready to go home... Frustrated." Gotta love that kind of hear-felt message!!

Ellie also learned to ride a bike this winter. It's a really awesome adapted tricycle! After half a dozen sessions practicing riding in the hospital hallway, she's doing really great and ready for spring to come so she can break it in on the bike-trail!

We continue to hope and pray that a cure is on the horizon. We live our lives to their fullest knowing that every day for each of us is nothing short of a gift. The last two years have changed us, have shown us things we otherwise wouldn't/couldn't have seen. I shake my head thinking about how crushed I felt then and how I can see now that it was a necessary part of our journey. God has used life to mold and shape our entire family. I really feel that without being so broken we wouldn't have agreed to take the journey he had ahead of us.

After the tornado and Ellie's diagnosis, as people came to our side to help, we vowed to turn their giving of time and resources into blessings for others. In 2011, we received a settlement from our insurance company on our house (the only part of our farm that was insured.) We opted to pay off our farm, fix our house over time, and turn that equity into rental properties that we could fix and rent reasonably to people who needed quality, affordable housing. Since 2011, we have purchased an apartment building and a couple houses (all that needed a LOT of work!) We've used these properties to support and minister to people who were still in the "ashes." I can't tell you the joy I find in seeing a family move from our apartments into a house (one that they can afford!!) Getting to be a part of their "new beginning" is truly a blessing for all of our family. It's fun to work when you can watch that work turn into a blessing for another family. I have found the greatest blessings in teaching skills to newcomers, as they work off their rent working on a house/apartment that another family will soon occupy. The relationships being built have grown so fast and so deeply that I can't begin to explain here. I simply want all of you to know that your help to our family, when we were in "the ashes," didn't stop with us... it's still moving forward. What a gift your love has given and that's the way it's supposed to be.

Kutless, "That's What Faith Can Do".

Here are the lyrics:

What Faith Can Do

Everybody falls sometimes
Gotta find the strength to rise
From the ashes
And make a new beginning

Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know

Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try

Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright

Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do

Even if you fall sometimes
You will have the strength to rise

The blogging world has fallen off my list the last few months. Sad but true, life continues as we fall beneath the swells of it. Now the mixture of scents brings me back to this world that I have missed. A sweet fragrance of laundry soap, bath water and vomit. Mmmmm. Just like old times.

It's nearly 2am right now and I just finished putting Ellie back to bed after yet another night of vomiting. It makes me sad and frustrated. We've been nearly 4 years free of the cyclic vomiting and now it has reared it's ugly head. I'm out of practice and not as keenly tuned to her sounds pre-vomit...so I've washed a lot of sheets the past week and a half. Those of you that have followed me for a long time might remember reading on our original website at www.fightautism.webs.com about cyclic vomiting. From birth, Ellie cycled. Seemingly normal behavior all day and evening followed by a random non-waking incident of vomiting in the middle of the night, typically between 12 and 1 am. I just washed vomit out of Ellie's hair (which now nearly reaches her lower back) again, for about the 7th or 8th time in the past week and a half. She literally almost slept through the bath. It's both strange and terrifying. When I find her she's usually flat on her back with her face and neck covered in vomit. I've always feared aspiration and we've been blessed by her always clearing her own airway. It' helps too that she's close to my room and I'm usually already bedside as she's vomiting. It's amazing (and such a blessing) that she always has managed to clear her airway after vomiting while laying on her back. God is good, even as we struggle.

I feel washed over with an entire series of emotions all over again. Each round of life, every change, every new development forces me into another phase of somethingness. I don't want to say "grief" because I want to think that I've grieved and I'm past it. Even as I write it, I laugh at myself. How many times can a person cycle through denial?? I just read a book talking about how grief isn't really phases, but rather waves that wash over you and then return to wash over again.

As I'm washing through her long locks of hair, thinking about how rotten it is that this has returned, I'm wondering if Mayo would have any new insight into this. We've run the GI workups before, done days of monitoring watching for an EEG correlate, nothing's ever come of it. I'm weighing the advantage and possibilities of testing, while considering the disadvantages of a scope, more x-rays, radioactive barium. I'm wondering what Ellie would choose; would she say, "It's not that bad to throw up in the night. Ten nights of vomiting is better than all the annoyance of testing. I cry less tears over vomiting in my own house than I do in the hospital doing all those tests." I resolve to ask her tomorrow, to give her the choice, let her decide this time. I'm coaching myself to really let her have the final say, I'm prepping in my head how I'll help her weigh the pros and cons and then really turn it over to her and let her decide.  

The fresh sent of vomit still lingers, regardless of the pile of blankets and jammies already swirling in the washer. I'm thinking about how early tomorrow will come, the list of things to do tomorrow, already knowing that the day will be so full. I am reminded that life continues, even as we fall beneath the swells of it.

Our little beauty + Clinical Trial

Ellie is standing looking out the window to the pasture as I sit here typing. She's "talking" and pointing out the window. I know she's talking about the cows and Emma's horse Lacy. She loves these critters! Her eyes sparkle as she points and talks. It's a lot of "moo moo's" with points, nods and smiles. I respond just as if she'd told me that Concord just bumped Lucy and that little Layla has really gotten big. She smiles because she's happy that I treat her like a big girl, she's happy that she gets a turn to express herself. Her favorite buttons on her eyegaze are "can I have a turn" and "excuse me" followed by something she wants to interject. (Ellie moved to a 45 button PODD system on her talker and is ROCKING it! She's saying so many things that we never would have heard without it! Serious BLESSING that talker is!!) I'm awed by how effortless this kind of communication is for her and by how satisfied she is with my responses. She could easily be frustrated with me because my response is not exactly appropriate for what she was saying. Today she's not, today she's all smiles and nods with her long pigtails bouncing as she nods.

I interrupted our talk about cows to tell her how beautiful she is. She stopped talking and looked up and me with a big smile. She looked down for a couple seconds and fidgeted with her hands and then looked up grinning again. I told her how she has the smoothest cheeks and the prettiest skin color. How her sparkling eyes make everyone smile. She grinned again and turned back to the window. I saw how similar her response was to the other girls, to most girls really.

I started thinking about how frustrated I get with her at times. Like yesterday when she pulled my sweet potatoes out of the ground and tried to feed them to the birds. Or like a few days ago when she squeezed the bunny until it died and in the same day plunked another bunny into a tank of cold water, nearly drowning it. I thought of how hard and frustrated life is from her side of things. That maybe her behaviors really are a cry for attention or an expression of a need.

It makes me think about how I really don't know what hard is. I think about my running adventure (I'm planning to run a 1/2 marathon on Sept. 2) and how motivating it is for me to think of Ellie when I get to a tough spot in a run. When all I want to do is quit and give up, I don't because I know Ellie probably feels the same way and she perseveres. IF YOU WANT TO DONATE Along with a couple other gals, we are actually going to be the chairs of the Step UP 5K & 1/2 Marathon to take place on Sept. 2 at 7:30am. If you'd like to join me as I attempt my first EVER 1/2 Marathon, you can register HERE! I would love to get to run alongside of friends and supporters! Proceeds of the race will go back into a fund to purchase chip timing equipment for use by the Storm Lake Running Club.

I think about how empty life would feel without Ellie. I don't mind how much she needs me, we're used to it I guess. I read another Rett mom's blog this morning (READ IT HERE) and thought about how right she is. I share so many of the emotions and thoughts that she wrote about the possibility of losing Ellie. It's terrifying and yet we cannot live in fear. We have to press on, trudge ahead, survive and maybe even rise above surviving!

This week we will leave and travel to John's Hopkins for a clinical trial. It's not a big trial that we think will cure Rett, but it's a trial that they're seeing improvements with. We're hoping that our participation will help Ellie and we're also hopeful that our contribution to the research will help researchers better understand how Rett works. So please take some time this week to pray for us. Pray for safe travels and for our van to function as it needs to and for the success of this treatment for our precious Ellie!

Thanks for reading and for being a part of our lives. Thanks for supporting and cheering us.

6 years old already

We had a splash-filled afternoon and evening today. We spent 6 hours today at the waterpark in town. Ellie loves to splash and run and jump in water. Watching her today made me so thankful for the abilities God has preserved in her. I felt a twinge of guilt as I watched her climb the gigantic staircase to the top of the water-slide, time after time. I was thinking of my friends and their little girls who are also fighting Rett. I grinned as she pulled herself up and out of the "bathtub" at the bottom of the slide, climbing over the edge and running back to the stairs. I cannot imagine the frustration she would have without the functional use of her hands. I felt so very grateful as I watched her grabbing balls from the water and throwing them across the pool at other kids. I smiled as she walked through water up to her neck heading for a group of pre-teen girls, thinking how much PT she was getting today while playing. I tried not to notice when the group of girls she tried to interact with all snickered and looked at each other when she touched their raft and got a little too far into their "personal bubbles." At the close of this day, I feel blessed for all the things Ellie can do. Tomorrow Ellie will turn 6. Our day at the waterpark was our way of celebrating Ellie and all of her abilities.


Too many days, I find myself caught up in the frustrations of how hard Rett can make our life. I want to wallow in self-pity for all that we must endure as compared to "typical" families. I want to study or wish or pray away Rett. Today, however, I am rejoicing.


Our Ellie is here, she's happy, and she's learning to communicate with us. She's satisfied with the things she gets to eat, in spite of her diet. She has wants and needs and is getting more and more stubborn about what those are and that we pay attention to them.


Just this week, I spent about 10hours reprogramming Ellie's device. I shifted her from a 15 button layout with quite limited speech options to 45 button layout with a PODD format.  Two minutes into her FIRST trial with it, (while I sat on pins and needles praying she wouldn't reject it) she grinned and found the "special occasions" button and subsequently "birthday" "cake" "presents" "cards." To say I was beaming probably doesn't do it justice. What a little smarty pants! Of course, a couple days later, now that she's found the trusty "cow" page, I'm having a hard time getting much else out of her than "moos" and constant conversation about her favorite topic! It's so encouraging to see her working so hard to focus and use her eyes to activate the desired buttons, even though they're now much smaller and closer together. She shakes sometimes because she's focusing so hard. Yesterday I saw her kind of shake her head and squeeze her eyes shut, as she tried to refocus to make hits. Her determination and desire achieve is so strong, she is her mother's child! :)


Ellie's also recently mastered a new sign. "Mine" is her new favorite word. It cracks me up because I initially did this sign as a joke with her playing that something that really was hers, belonged to me. It started out as a back and forth of "it's mine" "no, it's mine" and now has progressed into Ellie using the sign appropriately and with humor at times. Yesterday when she activated a button on her talker that can represent any of these three,  "I, me, my" She made her sign for "mine" indicating to me that that button meant her! I love how she smiles and how intently she uses her eyes to activate buttons and say what she has to say. It's amazing how determined she can be!


She really is an amazing little girl. I feel so very blessed that God chose me to be her Mommy.
Happy Birthday Ellie Boo