2015

At the end of every year, we can see how much the kids have grown, look back on the highlights and low points, and think about what has changed and what hasn't. As I look back over 2015, I see a year of mostly quiet changes that have positively and significantly changed our family's lives.

I left SBAK because I needed more time at home. A full time (or more) job and three kids is tough enough, but adding in Spina Bifida and anxiety issues just put things over the edge. I had such an amazing time working at SBAK, but our life was too busy, our house was chaotic, and I always felt pulled in multiple directions. People ask me often if I miss working at SBAK. Yes, of course. I miss the people I worked with, the families I got to know so well, and the excitement of doing big things. But it was absolutely the right choice, and I have zero regrets about it. 

My goal for staying home was to bring peace to our home and family. Just removing my daily commute from our schedule made a huge change in my stress level and attitude with everyone else. I do not miss the knot in my stomach trying to get home by a certain time and getting stuck in traffic on I-65 every single day. I'm spending much more time with Bo, which is much needed because I went back to work when he was 5 weeks old. I have always hated waking a sleeping baby to take them to daycare. Now Bo sleeps as late as he wants--which is often 10 am! Most days, no rush to get up and go anywhere. And I'm home when the kids get home from school, usually meeting them at the bus stop and walking home with them to hear about their days. I love this so much!

My big project this year was reorganizing and redecorating the first floor of our house. We have lived in this house for 7 years, and although we had done some work on the kitchen and this and that, it looked pretty much the same as when we moved in. I was tired of the colors and curtains and pictures on the walls, but even more than that we needed to change a few things to make our house work better for our family. We had all the kids' toys in the basement, but they rarely went down there to play, so they just brought toys upstairs to play with and clutter up my living room! We decided to make our office in the front of the house a toy room. So we installed french doors and hard wood floors, had the whole first floor painted, chose new curtains and art for the walls, put together shelves and other new furniture, rearranged, and cleaned out all the clutter in each room. It was a big job, and it took me all year. But our house runs much more smoothly and works so much better for what our family looks like now. And it's pretty, and soothing, yet still loud and wild. Perfect.

Besides the redecorating and general child rearing, I continued my role as Vice Chair of the Commonwealth Council on Developmental Disabilities. We had our four quarterly 2-day meetings as well as a retreat to make our 5 year strategic plan. I love the work we do and the people I work with on the Council. I also attended a strategic planning meeting in Baltimore for the national Spina Bifida Association, which was thrilling and fun. I continue to serve on SBA's Field Relations Committee and Program Committee (although it didn't meet this year). And I was a speaker at the SBAK regional conference with a presentation about being a parent advocate. I continue to co-host the Spina Bifida Kids message board on Babycenter.com and lead the Take That Spina Bifida Facebook Group. And this year a friend and I started another Facebook Group called Bowel Management for Spina Bifida that has become a wonderful little resource for myself and more than 1,300 others! Although I don't get an income for any of this work (I do get a small stipend for my CCDD meetings), they give me so much joy and meaning, and they keep me quite busy! One of my biggest thrills of the year (and my life!) was seeing the Spina Bifida Information Act pass the Kentucky legislature. Although I had little to do with that bill, it was a long time dream, and I had the opportunity to testify for it. Just incredible.

People also ask me often how Blake felt about me leaving my job, and I have to say he was my biggest cheerleader. He knew that this was a decision that I had prayed about and felt certain that God wanted me to do, and he supported me 100%. He also saw the need for more peace and less chaos in our house and for our children, and he knew having me home would help our family more than my income. I think Blake might enjoy having me home more than anyone! Although I'm not the best homemaker by any means, I cook way more than I could when working, do a better job of keeping our house clean and running, and can take care of all the appointments without having to ask him to leave work. There are many benefits to a working parent of having a spouse at home! 

Blake also had a big year! First of all, he had a lifelong dream come true. We went in with some friends and bought a used pop up camper! Seriously, he has been scheming a way to buy a camper since before we were married. We only had the chance to go camping in it once, but he was in heaven. We already have our camp site reserved for Memorial Day weekend. He has a New Year's resolution of camping at least 4 times. 

The second big thing for Blake this year is that he got a new job! Blake has been a mortgage banker for 10 years, and he has worked at the same place (although different companies have taken over) for 7 years. Just before Thanksgiving, he was offered a job by loanDepot. After Thanksgiving he flew to Irvine, California, for two weeks of training, and when he got home he settled into his new office--in our basement! Blake is working from home now! (That was another home renovation I had to undertake, home alone with 3 kids right before Christmas!) We didn't know whether we'd kill each other or love it, and I guess it's a little of both. :) After the first day, we had to set some ground rules. No, you can't work 24 hours a day just because it's in the basement. Yes, I'll try to keep the dogs quieter so you can talk on the phone. But overall it's been wonderful. Blake really likes his boss, the company, and his work. He's working more hours yet spending more hours with the family thanks to a 10 second commute. I think it's hilarious that this time last year, neither of us were home much. And now both of us are home all day! It's one of those bizarre situations that you just know God has a plan for but you don't know what it is yet.

When I left my job, I had no idea that Nate would have two surgeries this year. I'm so glad I was able to devote so much of my time to his recoveries and all of those appointments. And not feel guilty being away from work so much. We started 2015 doing some tests to see if Nate's spinal cord was retethered. In January we got the news that everything looked stable, so we happily put it out of our minds. We went back to Vanderbilt in April just to retest a couple things, and it was very apparent that Nate did in fact need another detethering. I was terrified because of all of the complications after his detethering 3 years ago. But the surgery went perfectly and there were no complications this time around. His recovery went well but was slow. For a few months he walked much slower, and it took awhile for his body to return to normal. The fall cross country season definitely helped him regain his stamina, he shaved 3 minutes off his mile run, and he even set a PR! This fall when he went back to Vanderbilt for a follow up MRI, we decided to go ahead with a belly surgery that we had been considering for him. It will allow him to be more independent with his care in the future. The surgery went so amazingly well and the recovery was about a thousand times easier than we had anticipated. Nate is one tough little kid. Another milestone this year was that Nate got his first wheelchair. It's just for long distances, but Nate thinks it's as fun as a bike. :)

This year Nate finished 3rd grade very strong, qualified for the Advanced Program in 4th grade, and made proficient on both of his KPREP tests (was one point shy of distinguished in reading). Fourth grade has started out rough. Whereas he had perhaps a tad too much support last year, he had basically zero support at the beginning of this year. I've been working with the teachers and IEP team, and we don't have everything worked out just yet but there has been a little progress. BUT, this year I have made major breakthroughs in understand how Nate learns and why he acts the way he does. After much searching and shifting, we have assembled an amazing team of (non-sb) doctors and therapists for him--developmental pediatrician, psychologist, ABA, PT, OT, and three caregivers in our home--and not only have they taught me, but they have also listened to me and accepted and adopted what I've learned. Nate's behavior at home is so much better than it was at the beginning of the year. The biggest indicator of change is when I say, "Nate, please go (do whatever)" and instead of arguing with me, he GETS UP AND DOES IT. This is huge, and such improvement. I've learned how to communicate with him, and he has become less obstinate. School is still having a lot of behavior problems, but we are working on it. Once I really understood the reasons for his behavior, it was easier to help him.

Oh and lastly about Nate but certainly not least was that he was baptized! This summer I was going through a Bible study book with him, and he had some great questions. One night he asked how he could get Jesus in his heart, and we prayed! That Sunday Blake baptized him at our church. That was probably my favorite day of this year!

Georgia also advanced so much this year. Like Nate, Georgia also has anxiety, which causes her to be afraid of just about everything--dogs, new experiences, swimming, loud noises, so much. Georgia liked Kindergarten, but we had a lot of tough mornings of crying and fits, and I couldn't get her to try anything new. She really worked on it this year with the help of her doctor, and I saw Georgia really come out of her shell. Over the course of the year, she got braver and braver. First she decided she loved swimming and wasn't afraid of water. We went to Myrtle Beach in July, and she was a fish! We went to an amusement park, and Nate said he wanted to "bungee jump" (kids could jump on a trampoline strapped to bungee cords), and to my surprise Georgia said she also wanted to! And she did! I saw little acts of bravery all year, and then on Thanksgiving she told me she wanted to get her ears pierced. She was afraid, but as we say all the time, bravery is being afraid but doing it anyway. She is so proud of those earrings.

Georgia also ran cross country in spring and fall, and this fall she took me by surprise and really increased her pace and set a PR. She can run over a mile without stopping for a walk break. Georgia has developed some wonderful friendships with a small group of girls over this year too. (In fact, she is having her first sleepover with her bff Aliya tonight.) Her teacher says she is a delightful student. She's such a helper at school and at home. She's my mommy #2, and sometimes she can handle Nate and Bo better than me. She's nurturing and a great planner.

As for Bo, he's grown SO MUCH this year. He was still my baby when 2015 started, only 2.5. This year he potty trained--extremely easily, thank goodness. And I moved him to his big boy bed. He's showing us his huge personality! He's a little clown. Just naturally really funny. He has this deadpan voice he uses sometimes that cracks me up. He's big enough to play with his big sister and sometimes his big brother these days. One of my favorite things about Bo is his crazy blonde curly hair. One thing we are working on is his blood curdling scream. :) With me staying home with him this year, I basically had to take him everywhere. At first that was difficult! He wasn't used to sitting in quiet waiting rooms and behaving through the grocery store. We had LOTS of practice this year, and he has come a long way. I can't believe he'll be going to preschool next year.

As if 3 kids, a dog and a cat weren't enough to care for, we added a new family member this year! We have been researching options for service dogs, companion dogs, etc, for Nate for more than a year. We were turned down by a rescue organization and a service dog nonprofit, couldn't find just the right dog at the humane society, and didn't feel like we were a good fit for another service dog nonprofit. We wanted a *calm* dog that would help Nate calm down. That's different from what most service dogs are trained to do, but Nate doesn't need a dog for any mobility needs. So we finally decided to bite the bullet and get a goldendoodle puppy, much to the disapproval of everyone including the trainer we are using. :) I went to pick up Tilly the Friday before Thanksgiving, which was the night we got home from Nate's second surgery. I wanted a girl, and I held three girls. When I picked up Tilly, she just snuggled hard into my neck. She was so quiet and meek and calm. Well, after getting her home, in less than a week she came out of her shell! Now no one would call her quiet, meek or calm! She's a feisty, hyper puppy. But she's also very sweet and still loves to cuddle. We know she will need a lot of training and time to become what we had in mind, but she is smart and already learning. When she first came home, all the kids loved her but as predicted Georgia and Bo were very afraid of her. Especially as she became more energetic, they could usually be found standing on the couch shrieking. But also as I predicted, they have become much more comfortable in a short amount of time. Now they hug her and pick her up and walk her. And when she gets the puppy wilds and runs around trying to chew on everyone, you can still find them on the couch but they are yelling at her to stop.

In 2015 we went to Perdido Key, FL, Myrtle Beach, SC, camp at the Center for Courageous Kids, camping at Holiday World and at Taylorsville State Park, and to a cabin in the Smoky Mountains.

What a year. There have been a lot of changes that may not seem huge to people outside of our family, but they have incrementally helped us toward where we want to be as a family. We are entering 2016 ready to see what God has in store for us.

Happy New Year!

Spina Bifida Information Act: Guide to Introducing Legislation for the Spina Bifida Community

Kentucky recently passed the Spina Bifida Information Act, which ensures that when healthcare professionals who give parents the Spina Bifida diagnosis, they will give them written, up-to-date information about Spina Bifida, as well as contact information to the Spina Bifida Association of Kentucky. SBAK and local families were involved in the process and learned lessons along the way that can help other chapters and families advocate for similar legislation in their own states.

First, let’s take a look at the legislation passed in Kentucky. Fortunately for us, the local Down syndrome organizations had successfully advocated for a bill regarding the Down syndrome diagnosis in 2013, and we could use their efforts as a guide. In fact, our bill sponsor chose to simply amend the Down syndrome legislation to add Spina Bifida.

It is important to note that this legislation is neither pro-life nor pro-choice. It is only pro-information. We simply want doctors to give parents accurate information about Spina Bifida and resources for support. We are not asking that they recommend or discourage any one course of action. We trust that parents will make the best decision for their baby and family when given good information and support. By leaving out the abortion issue, the legislation is much more likely to get passed, and healthcare professionals are much more likely to abide by it.

The Kentucky law reads as follows:

AN ACT relating to the provision of information relative to spina bifida.

Be it enacted by the General Assembly of the Commonwealth of Kentucky:

Section 1.   KRS 211.192 is amended to read as follows:

(1)     For the purposes of this section:

(a)     "Down syndrome" means a chromosomal condition caused by cell division that results in the presence of an extra whole or partial copy of chromosome 21; and

(b)     "Spina bifida" means a neural tube defect, the most common of which is the open neural tube defect Myelomeningocele.

(2)     A health facility as defined in KRS 216B.015(13), physician, health care provider, nurse midwife, or genetic counselor who renders prenatal care, postnatal care, or genetic counseling, upon receipt of a positive test result from a test for Down syndrome or spina bifida, shall provide the expectant or new parent with information provided by the Cabinet for Health and Family Services under subsection (3) of this section.

(3)     The Cabinet for Health and Family Services shall make available to any person who renders prenatal care, postnatal care, or genetic counseling to parents who receive a prenatal or postnatal diagnosis of Down syndrome or spina bifida and to any person who has received a positive test result from a test for Down syndrome or spina bifida the following:

(a)     Up-to-date, evidence-based, written information about Down syndrome or spina bifida that has been reviewed by medical experts and Down syndrome or spina bifida organizations and includes information on physical, developmental, educational, and psychosocial outcomes, life expectancy, clinical course, intellectual and functional development, and treatment options; and

(b)     Contact information regarding support programs and services for expectant and new parents of children with Down syndrome or spina bifida, including information hotlines specific to Down syndrome or spina bifida resource centers or clearinghouses, national and local Down syndrome or spina bifida organizations such as Down Syndrome of Louisville, Down Syndrome Association of Central Kentucky, Down Syndrome Association of South Central Kentucky, Green River Area Down Syndrome Association, Down Syndrome Association of Greater Cincinnati Serving Northern Kentucky, Council on Developmental Disabilities, the Spina Bifida Association of Kentucky, and other education and support programs.

If you would like to see similar legislation in your state, here are some tips for advocating to your state legislators.

1.      Brush up on your high school civics. Here’s a good refresher on how a bill becomes a law at the state level (PDF): How a Bill Becomes Law. In a nutshell, a senator or representative needs to sponsor the bill and introduce it to a committee in either house. Let’s say it is introduced to the Senate Health and Welfare committee. After it passes there, it goes to the Senate floor for the entire body to vote on. Next it needs to be picked up in a House committee. After it passes in that committee, it goes to the House floor to be voted on. Once it passes there, it goes to the governor’s desk to sign. Unless the governor vetoes the bill, it becomes law.

 

      You also need to do some research about your state’s legislative session so you can understand the proper timeline of your bill. If there are 10 days left in the session, it’s too late to introduce a bill and it may be better to wait until the session ends so your legislator can prepare to introduce at the beginning of the next session. It would be a shame to get 3/4 through the process by the time the session ends, and then have to start all over again next session.

2.      Find out whether your state already has a similar law that includes spina bifida or another diagnosis such as Down syndrome. Every state has a legislative web site that you can find with a little internet searching. Or you can call your representative’s office and ask.

3.      If you don’t already know, find out who your state legislators are. Simply Google: Who are my legislators (type your state). Every state should have a web site where you can type in your address and see who is your state senator and representative as well as their contact information. Remember that these are the people who want your vote and are likely to be receptive to your concerns.

 

4.      Call your legislators and ask for a meeting with each of them. An in-person meeting will be the most effective and impactful way to communicate with them. If you cannot travel to the capitol, they probably also have an office in your district. If an in-person meeting is not possible, you may also call to leave them a message or write them a letter or email.

 

5.      When you meet with or otherwise communicate with your legislators, bring along a copy of the Kentucky legislation (copy it from above and paste it in a document to print) and ask them to sponsor a bill in your state. Providing them with the Kentucky wording makes it even easier for them to sponsor legislation because they have a template to start from that has already been successful in one state. You may choose to include or omit the language on Down syndrome. You may also consider asking your local Down syndrome organization or a family you know if they would be interested in helping you advocate for legislation that includes both diagnoses.

6.      During the meeting, it is important to tell your story. Think about what you will say in advance so that you can tell your story succinctly but also make your point about the impact this law would have on families in your state. Remember that your senator and representative are humans just like you who have families and most likely ran for this position so they could help people. Again, try to avoid making the issue too political. If you’re telling your diagnosis story, you can certainly tell about your doctor pushing abortion if that is part of your story. But keep the focus on the ethical reasons for doctors giving accurate and up to date information so that expectant parents can make informed decisions.

7.      If neither of the legislators that represent you are willing to sponsor a bill, you can look for others in your state legislature who might be interested. Perhaps there is a senator who is especially interested in disability matters. Every state has a Council on Developmental Disabilities that may be helpful in identifying disability friendly representatives. You may also seek out legislators in leadership positions, who may have more success in pushing a bill through. For example, in Kentucky the senator who serves as the Chairwoman of the Health and Welfare Committee sponsored the bill, which made sense because this bill fell under the committee’s domain.

 

 

8.      If a legislator decides to sponsor your bill, you can now advocate for the bill by contacting others on the committee who will be voting for it to explain why it is important and to ask for their vote. Keep track of its progress and try to be present to testify for the bill when it comes up for a vote in the committee.

 

 

 

9.      We learned a few lessons about testifying to the Senate Health and Welfare committee before they voted. First, they really did not need to hear our testimony. They had already read the bill and were ready to vote favorably, but they gave us an opportunity to testify anyway. We had four people there, but we narrowed it to two people, and even that was more than needed. The most effective testimony was a mother’s story about her horrific diagnosis and to compare that to her son now. Her cute two year old was brought into the room and charmed everyone. Although they didn’t need to hear testimony, they enjoyed the story and it left an impression on everyone in the room. Just be mindful to not talk too much. These are busy people who are trying to get through a lot of work in a short amount of time. And it is possible that the more you talk, the more opportunity they will have to think of objections and problems with the bill. When we went to testify to the House Health and Welfare Committee, we simply stated our names, told them we had statements prepared if they would like to hear them, and otherwise we would answer any questions they had. They had none, and the bill passed the committee within seconds.

 

 

 

 

After testifying for the bill, I was interviewed by a reporter for our local government channel.



 

10.  After the governor signs the bill, request a public signing so you can bring some families for a photo opportunity and potentially some press.

11.  Have a plan for how to help implement the plan. In Kentucky, the Cabinet for Health and Family Services will be responsible for ensuring doctors have the information they need to distribute to expectant parents. But the Spina Bifida chapter/organization can work with them to provide the right information. Currently, the best documents to use are found on spinabifidaassociation.org in their section on Health Information Sheets (PDF’s):

 

      Expectant Parents' Guide (PDF)

A Guide for Medical Professionals (PDF)

12.  Please feel free to contact me or the Spina Bifida Association of Kentucky if you have any questions. Good luck!

 

What Bo said today

Bo was my slowest talker of the three kids. At his one year and 18 month check ups I brought up my concerns about his speech but she said he was in normal range. Then at his 2 year check up, she saw what I was saying. Something was wrong that day (he felt bad somehow) but he couldn't tell us what it was, even in a 2 year old way. So she suggested getting a speech eval through early intervention. We filled out paperwork and waited a few weeks for the evaluation, and in the meantime Bo started daycare. He had been going to an in-home daycare before then, and had a nanny over the summer. This was real daycare with other kids his age, with a schedule and a curriculum. He started picking up more words, and by the time his evaluation with a speech therapist came around, of course there were no concerns. That whole experience was quite funny actually. He NAILED this evaluation. He was charming and polite and funny and said words I had never heard him say before. "Pig? Since when do you say pig?" I think it was the first time he'd ever said pig. In his speech evaluation. So the lady left saying that I had a pleasure of a little boy and she saw no delays in his speech.

Since then, his speech has snowballed, and he says all sorts of hilarious things. Like one day leaving church, he started saying "Happy Birtday! Birtday party ... tea party!" I said, where did you learn that? He said "Church!" Well okie dokie then.

Blake and I have started using one of Bo's phrases for when he doesn't want to do something: "I tant watch." I was trying to put his shoes on one day, and he said (typical toddler) "I NO WANNA PUT ON SHOES!" And of course I continued to put on his shoes, and he said, "I tant watch" and covered his eyes.

Bo is our first kid who likes to dip their food! Finally, a ketchup eater! Except he calls it "Chepup." And diapers are "biters."

One night, Bo and I were snuggling on the couch, and I said, I love you! Bo says, "Tiss!" so I kissed him. Then he said, "Hud!" so I hugged him. Then he said, "Tittle!" so I tickled him, and he started all over again! It's his little game. Georgia learned it and does it with him all the time now too.

Bo is obsessed with Mickey Mouse Clubhouse and apple juice (which I now have to give as a splash in a cup of water). He is a SCREAMER. He can scream so loud. Now that I'm home with him all the time, I've had to take him everywhere with me, including the other kids' doctor and therapy appointments. First of all he doesn't want to go in. But when we get in there, of course he doesn't want to leave. And screaming like someone is stabbing you is not always appropriate in a professional setting. So I've learned to get everything ready to go, and then just grab him and practically run out of the office. It's graceful and polite.

He wants to play with Nate and Georgia all the time, but poor kid, they don't want him to play with them because they say he messes everything up. And they're right. He really does mess up all their games. Sometimes Georgia will appease him by playing like she's a teacher in his daycare classroom, and they'll have fun until the next episode of Mickey Mouse Clubhouse.

He's full of spunk and all boy, and I love watching him grow and learn.

Seeking Peace

You wouldn't necessarily know this since I didn't blog much (okay, barely at all) last year, but I spent the majority of 2014 feeling very restless and a little crazy. I don't usually have a great memory about specifics, but I remember January and February of last year very well because I was so miserable. There was so much snow. There was so little school. The kids were sick. And I couldn't get to work. That started my quest to regain some order and peace in my family's crazy life. I looked for the most reliable childcare options possible, even if they weren't what I would have chosen if reliability wasn't my first goal. That did help some. But I spent much of the rest of the year just marveling at the chaos of our life.

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Flashback to 8+ years ago: When Nate was born, I went back to work, first part time and then full time. He got sick so often that winter because: preemie, and daycare. Looking back, that was such a dumb decision. I was all, "He'll be fine! You shouldn't 'baby' babies so much! Back in my day ...." But after Nate was hospitalized twice with pneumonia, after holding him down so they could put an IV in his head, and after all manner of traumatizing experiences, enough was enough. I had never even considered the possibility of being a stay at home mom. Never ever. When I was a girl, I dreamed of moving to the big city and having an exciting career. I probably thought about having children too, but I don't recall a single daydream about staying home with babies. So one night at Walmart I was browsing the book aisle and saw a book about being a stay at home mom and for some reason picked it up and bought it. As I read it, God changed my heart. This is what I needed to do for my son at that point. I needed to keep him home to keep him healthy and help him with his development (Spina Bifida, physical therapy, that stuff).

So I quit my job, even when it didn't make sense, you know ... financially. Blake fully agreed with me and supported me, and he picked up a second job waiting tables after he was done selling mortgages all day. (I'm pretty sure that's what he does.) A few months later, the company he worked for in Lexington closed their office--a SCARY time for us--but transferred him to Tennessee. For six months he drove 2 hours to work and 2 hours back every single day while I worked on selling our home. We finally sold and moved to Tennessee, and two months after moving into a rental town home, that office shut down too. We were freaking out. His mom suggested he look for jobs in Louisville since nothing was panning out in Lexington. He applied for a job and got an IMMEDIATE call. He got the job, we came to Louisville to look for houses, and we bought this house that weekend. We still absolutely love Louisville 6.5 years later. I look back and marvel at that time in our family's life, because God orchestrated all of it, and we were just following even when it didn't make sense. If I had been working when Blake lost his job, it would have been a much more complicated decision to move, and I'm not sure we would have because I know me, and I probably would have gone all "But MY job!"

I had a pretty good hunch that one of the big reasons God moved us to Louisville was so I could get involved with the Spina Bifida Association of Kentucky. I was already working with them on a project to help expectant moms as part of my master's degree, but living in the same city meant we could get very involved in programs. We had Walk-N-Roll teams, we went to playgroups and holiday parties, and I finally finished my project and my master's program about a month before Georgia was born.

I thoroughly enjoyed staying at home. I loved the flexibility of it, and not having to feel like I was letting someone down if I had to stay home with a sick kid. I also worked very hard with Nate during my time at home, and we got that boy walking! (I am not sure how much I actually had to do with that, but I'll forever claim it as a victory anyway.) And of course we made wonderful memories, and I took a lot of pictures, and I even occasionally got a nap.

But that spring before Georgia turned one, I started feeling frustrated. I felt cooped up in the house. I complained that some days the most complex problem my brained tackled was how to most strategically load the dishwasher. I felt stuck. So when the program coordinator from SBAK called me to tell me she was leaving for another job, I had the terrible tact to announce that I wanted to apply for the job. I prayed about it, and I was (and still am) certain that was exactly where God wanted me. I LOVED that job. I was one of those annoying people who constantly told others that I had the best job on the planet. It didn't feel like work. I was so stimulated, mentally and creatively, and felt like I was truly making a difference in other people's lives.

Then the Executive Director job came open. At first, when people asked me if I was interested in applying, I adamantly said no. Why would I? I love my current job! Plus, I wasn't fully qualified for the ED job. But over the next couple of months, God was working on me. I told Him He was crazy for thinking I could do that job. He told me I should do it anyway, and He would work through me. After much prayer and even testing Him a little through the process, I became absolutely certain that was where God wanted me. I applied and interviewed, and to be honest I kicked butt in that interview. I surprised myself. Or I should say that God showed up and made me look really good. I got the job, and I was basically scared to death.

For 3.5 years, I showed up to work fully aware that I was not enough for that job, but I was clinging to Him. I prayed a lot. (Probably why God put me in this situation, so I would have to lean on Him.) I prayed before speaking engagements, I prayed before employee evaluations, and I prayed over grant applications as I put them in the mail. And it was the most thrilling experience I've ever had. What an amazing opportunity to expand my skills and try things I'd otherwise never have the chance to. I designed billboards! I spoke at the Spina Bifida National Conference! I was part of a viral video! I started a satellite office in Lexington! Over those 3.5 years, I assembled a team, and we changed the face of the organization. It was amazing.

When I started, I knew it would be tough to do this BIG JOB and to do it well, with two little kids at home. I got the job in September, and that fall was when Nate had a bunch of health complications and surgeries. Then in January I discovered I was pregnant! Surprise! How in the world was I going to throw another kid in the mix when I was already in way over my head? God wasn't surprised or the least bit concerned. He assured me that He had this. I went back to work five weeks after Bo was born, and at most programs he was strapped onto me in a baby carrier. I pumped in my office. I was a zombie for a few months. But we were still doing really great things, miraculously.

*****
So back to last year. It felt like everything was spinning out of control. It was becoming increasingly more difficult to find the floor of our home. I got so frustrated when one of the kids was sick and I had to stay home because I HAD WORK TO DO. So I spent sick days juggling my little beloved and checking emails and working on whatever project was at hand. Last year was also when we finally got to the bottom of Nate's quirks and behavior issues. We took him to an amazing doctor who evaluated him and diagnosed him with Generalized Anxiety Disorder. We decided to try medication to give him a little relief from his own misery, and we started therapy for him. At some point in the year I started noticing that Georgia is also dealing with her own anxiety. It looks different, but it's just as concerning. I do believe that their anxiety is inherited (Blake has battled anxiety since childhood, though he didn't have an official diagnosis until he was an adult), but I had to admit that our crazy life wasn't helping anything.

So, what do I mean by crazy life. We have the typical crazy mornings of anyone with multiple kids in school. They can't find their shoes, they take too long to eat breakfast, where is your homework? That kind of stuff. But add in extremely terrible moods, the fact that I am not a morning person at all, and my own stress that if I don't get all these little people where they need to be on time, I will be late for work. Many, many, many days, after huge battles and fights and tears and regretted words in the morning, I would no sooner get settled into work before I would get a phone call that someone was sick or forgot their backpack or a thousand other reasons for me to have to leave work. If I did work a full day, I would try to milk every second I could out of it because I didn't know if I would be there the next day, and I would end up leaving a few minutes late, and then stuck in traffic, and completely STRESSED OUT that I wasn't going to make it in time. Either to pick up the kids from daycare and after school care or for the nanny to leave on time. Every single day, I was so stressed that my stomach was in knots on the way home. I hated it. Then when I got home, we often had to immediately head out to therapy or an appointment, run through a drive through for dinner, all the kids were tired and cranky, and then we had to do bedtime routines and get ready to do it all again the next day. I don't want to sound like a martyr here, because Blake picked up a ton of the slack. For much of the time I was working, he was the primary cook and did the majority of the laundry and probably half of the dishes. And by the time I got home I was just so tired--mostly mentally and emotionally--that I just plain old didn't feel like doing anything. I didn't like what our life had become. I didn't know how to get off the crazy train. Still, I loved my job. I really, really did. I loved that organization and everything we were doing. And I felt so torn because I never felt like I was doing enough for SBAK, or that I was doing enough for my family. It was one thing to choose a crazy life for myself, but I realized it was affecting my kids and Blake too.

Last summer, on a whim, I ordered the book "Interrupted" by my fav Christian author Jen Hatmaker. I had already read her book "7" in 2013 and it had turned my life upside down for awhile, so I was prepared that it could happen again. And it did. The premise of the book is that Jen was feeling spiritually dead, despite all the good Christian-y things she was doing, so she prayed, "Lord, raise in my a holy passion." And it completely changed her life. So with some trepidation, I started praying the same prayer. That's a dangerous prayer, and I knew it. But I was also desperate to feel spiritually whole again instead of so spread thin and fragmented.

About a month later was the kids' first day of school. It was a very emotional day. First of all, Nate rode the regular school bus instead of the special needs bus for the first time. I'll always remember him climbing those steps on his own. Even bigger, Georgia started Kindergarten. After I saw them board the bus, Bo and I went to school to greet them as they entered. (I know, lame, but the school asked that bus riders actually ride the bus the first day and suggested parents meet their Kindergartners at school. So it wasn't my idea, but I was relieved at the suggestion.) They were nervous, but everything was fine. And THEN, if that wasn't enough, I dropped Bo off for his first day of daycare at a new "real" daycare. (Previously he was at an in-home daycare with someone we had been sending all three kids to for years.) The previous day we had dropped in for about an hour to sort of introduce him to the place, and I was just haunted by this other little two year old who incessantly--the entire time I was there--bawled "Mommy comin later .... Mommy comin later .... Mommy comin later...." This sad child just kept repeating what the teacher said to comfort her. I couldn't hold back the tears! I still tear up thinking about that. Of course she got used to daycare and is still there and doing fine, but I was just so sad about it all. I strategically dropped Bo off that morning during outside play time, and he couldn't have cared less if I ever came back as long as he got to play outside.

I went to the parking lot and sat in my van and cried and texted Blake to tell him about the morning. He texted back "I wish we could afford for you to stay home with the kids." Three months earlier, I would have probably been really irritated that he said that and even spouted off something defensive about how he didn't think my job was important. But that day, I truthfully answered back, "Me too."

God is so tricky! It amazes me how He not only shows us what He wants us to do next, but he also MAKES US WANT TO DO IT. Over the past nearly five years of working at SBAK, I had no desire to stop working! I'm sure I told a dozen people in various conversations that although I was grateful for my time at home with Nate and Georgia, staying at home just wasn't right for me right now. And that is actually true! It wasn't right for me then. But all of a sudden, it was right. And I want to make that clear--I don't believe that God wants all women to leave their jobs and stay home to raise babies. I don't believe it because I KNOW in my heart that God wanted me to work at SBAK during that time period. But in 2014, starting in the beginning of the year and increasingly as the months went by, He made me restless enough that by the time I dropped the kids off for their first day of school, I was ready to accept that He wanted me to make a change. God knows He has to make me miserable before I'll consent to a big change like that. After that, day by day I became more and more miserable. He was clearly speaking to me. I started longing to be at home. Work started mattering less and less to me. And one day shortly after that text convo, one of us brought it up again. Blake and I were both in agreement that we didn't know how, but we knew I had to quit my job.

That was HARD. That job was a part of me, and it was sometimes physically painful to think about separating myself from it. We made the decision in September that I would resign, but we figured it would be spring or summer of this year before we were financially ready to lose my income. We started taking steps to pay off or consolidate debt, decrease any monthly payments we could, etc. I kept asking God when I should leave, and it was so annoying that all I heard back, every time, was "Now." Um, God? You know I can't just leave, right? I mean, what would they DO? The Walk-N-Roll is coming up, I just hired a new staff person who isn't fully trained yet, and I can't just leave a gap while they find a new ED." Even then, I knew God was chuckling at me and my arrogance and lack of faith. One day I told Blake that I didn't think I could wait until spring to quit. I thought I should be done by the end of the year. He said he didn't think there was any way we could be ready by then. And I said, "I don't think God really cares what you think." He thought about it for less than a minute and said, "If that's what God's telling you, that's what we'll do." Oh, I am so glad I'm married to a man who knows the same God I know. If I was married to a non-believer and said something like that, they would think I was crazy and would never respect my reasoning for decisions. I gave my notice in early November and promised my board chair I wouldn't leave a gap. God kept it up with allowing life to get harder and harder. :) Hey, he told me "Now"! I really wonder what might have happened if I had actually listened. I know for one thing my Christmas season would have been a lot more enjoyable. I was pretty miserable in December. I was stressed about the shopping and the planning and the traveling and the finishing up work and the holiday parties. It wasn't fun. But once Christmas was finally here, we did have a very nice Christmas.

A few days after Christmas, we left for a week long vacation to Florida. Even though I wasn't "officially" done with work, it felt like the beginning of a new chapter. It was such a relaxing week just spending time with our little family. When we came back, I had already taken Bo out of daycare, and I worked part time for two weeks until the new ED was named. And she is one of the staff people I hired, and I think she will do such a great job leading SBAK. In many ways, she will do a much better job. And what a lovely way to leave a job--on good terms, continuing to volunteer for the things I'm passionate about, and able to say no to things I don't want to do anymore. She asked me once how I feel about leaving. Am I sad? Not anymore. I think I would be sad if God hadn't made it so definitely clear that this is the right decision and the best thing for me and my whole family. He doesn't just make willy-nilly decisions. I can rest assured that He has good plans for me. Plans to prosper me, not to harm me. One of the most overwhelming feelings I have leaving SBAK is (I regret to admit) relief. For 3.5 years, the organization rested on my shoulders. That was an honor for me, but it was still a great weight. I also tried really hard to not feel like a failure. I wanted to stay in that job for at least 5 years to provide stability to the organization. But I have just accepted that I was only meant to be there for a season to provide a transition from one ED to the next, and to accomplish a few specific purposes. I may never know the full extent of any impact I had, but I just have to be satisfied that I did the best I could, by the grace of God, and that is plenty good enough. I am also filled with anticipation and excitement. See, I know that God wants me home to spend precious years with Bo. I know he wants me to take better care of my people. But I also think he has some surprises in store for me. Some plans that I couldn't even dream up if I tried, and that I wouldn't be available for if I was working full time. I have some ideas about what those could be, but I don't even want to speculate too much. It's like knowing someone bought you a special gift, and you just savor the anticipation of the surprise, knowing they loved you enough to do something amazing for you and that they want to present it to you at just the perfect time.

Last week I heard myself telling someone that I was trying to create a more peaceful house, and that was the first time it really hit me that that is what is driving everything I'm doing right now. (Hello, Colleen, have we met?) That's why I left my job. That's why I'm so stupidly excited that I am finally, after 2.5 weeks home, caught up on laundry. We've also started some remodeling projects (not typically peaceful, but this hasn't been bad), and I just realized today that I've chosen very peaceful paint colors to replace the bright and crazy colors on the walls now. I've been looking into essential oils more and started diffusing lavender to try help the kids' anxiety, and Sunday night when some friends were over for a Super Bowl party, one of them actually said, "Your house seems really calm." So it's working? I'm trying to create a more peaceful home to combat the chaos we have experienced for a few years now but especially the last 12 months. I'm trying to help the kids learn how to manage their anxiety, instead of contributing to it with a crazy schedule and unorganized home. I love this verse: "My people will live in peaceful dwelling places, in secure homes, in undisturbed places of rest." (Isaiah 32:18) But it just dawned on me a few hours ago that, even though the steps I'm taking toward peace are important, the key to peace isn't having enough drawer space to fit all of our clothes, or having a schedule for me to grocery shop every Monday so we have something the kids like to eat for breakfast every morning, or even me and Bo greeting the kids at the bus stop each afternoon. No, the key to peace is God Himself. He tells us to seek and pursue peace, and he will bless us with it. I am so thirsty for His peace, and it's my greatest wish for my husband and children.

I hope this won't be my only blog post of 2015. One of my many goals for my time at home--however long it may be--is to once again record my favorite memories and all the wonderful and funny things the kids say that I will want to always remember. Here's to a great 2015.