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.