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.