An Open Letter...

to all my friends who don't have medically-fragile children,

   First, let me start by saying I miss you. This stage of life we're in, raising tiny people, can sometimes feel like a run-out-the-clock (until bedtime) sort of situation. I know we're both busy. I know life is crazy. It doesn't make me miss you any less. I think about you more than you know.

   I realize I am MIA from time to time. And, I know there are times you take that personal. I'd like to ask you to take pause before you let it hurt. It's not intentional. I promise. Sometimes I can answer your text right away. Sometimes I open it and immediately have to drop my phone and run. And, unfortunately, I never know which one it's going to be.

   I need to apologize. I know that there are times it seems like I think I'm superior to you because I'm going through something you can't understand. I'm sure I've unintentionally given off the vibe that "I know your life is stressful, but look how much more stressful mine is..." I also know I probably seem selfish because of how often I talk about my family's needs. You are probably tired of hearing about how hard my life is or how painful it is to watch my child go through this or how frustrating insurance and doctors and big pharma are. I'm sure you are tired of hearing the same prayer requests at every church service or prayer meeting (and if you're not, that's because I'm afraid you are so I don't bring it up anymore).

   I am really sorry if you've ever felt that way.

   I'm sorry for the times you have felt overlooked because it's 'always about me'. I try to not let this be the case. But, to be honest, when those moments happen, more often than not, it is a desperate plea for you to SEE ME. For you to notice me. To hopefully be understood on some small level. And, to be shown grace for all the times you've felt like I've let you down.

   Because the truth is, you can't know what this is like. You cannot understand. And, to be really honest, it hurts when you say you do. Because that's when I know you really don't see me.

   The really hard thing is that, as much as I want to feel understood by you, I know the only way for that to happen is to have you going through the same thing. And, there's NO CHANCE I'd EVER wish this upon you. I would never wish upon you the constant worry and wondering when the next seizure is going to strike and never being comfortable or at peace if she's out of your sight and the nonsense of dealing with medicine schedules and refilling prescriptions and fighting with insurance and doctor's appointments and tests and more tests and not enough tests and wondering why in 5 years we've never had her seizures under control and giving every ounce of yourself every single day just to have to do it all night too and yet fearing sleep and slides and swings and pools and bath time and food coloring and candy (and trick-or-treat and valentines and christmas candy and easter egg hunts and birthday treats at school) and trips in the car and having to go to meetings at school to educate the staff on epilepsy and emergency procedures and writing protocols and changing EVERYTHING every few months because nothing works and trips to the ER... so many trips to the ER and dealing with soiled bed sheets and clothes because seizures take away her ability to control it and holding your unresponsive child and not being able to hold your other children because this one NEEDS you again and watching her be unable to form coherent sentences even though you can tell she knows what she wants but cannot find the words or seeing her blue and convulsing on the floor and begging God to heal her because you know that every single seizure has the potential to take her from you forever and still always hearing "not yet."

   Nope. I really don't want you to understand that.

   I know there are things that you have experienced that I cannot understand because I have not walked through those same trials. And, I apologize for the times when I have cheapened your experiences by presuming that I know what it was like to be you in those scenarios or, worse... made you feel like that matters less than what I've dealt with. Please, please forgive me.

   So, I guess what it comes down to is this... dear friend, I'm asking for grace and patience. Before you allow yourself to feel hurt that I don't initiate, consider the possibility that it was a bad epilepsy night and we didn't get much sleep. Before you mentally roll your eyes when I start venting about things, please consider that I'm trying to let you in on a very challenging and painful thing we're experiencing and I'm trying to help you understand. Before you tell me you "get it" or that you understand, maybe consider the possibility that you don't. And, know that I think that's ok. I don't need you to understand. Some days it's all I can do to simply make sure my family successfully makes it through the day. If I somehow am blessed with the energy to not only go out with you, but also have the mental capacity to hold a grown-up and coherent conversation, please, at some point during our time together, just listen. That's all I really need. I need someone to hear the hurt, to hear the stress, to hear my heart, and to be ok with me just as I am that day.

And, please, always remember that (even when I can't express it well) I love you and am so grateful for your friendship.

The Two Words that are Saving my Motherhood

I'll be honest, this whole being a mom to littles and having one with special needs thing is exhausting.

Especially since I'm one of those weird extroverted introverts.

I love and am so grateful for my friends, but I NEED peace and quiet to recharge so that I can keep loving my friends. ;)

I get frustrated with myself that my family gets the worst of me. But, for an introvert, it is so hard to have people around CONSTANTLY. And, when you're a mom of littles, there are no breaks... especially when one of them has health issues that require more hands-on than most other kids require.

So, I've had to develop some coping mechanisms.

One of those is simply showing myself more grace. Being ok with being the World's Okayest Mom.

But, another one of the BEST things I've done as a mom was actually pointed out to me by my husband a few nights ago. I honestly didn't even recognize that I had started to do this.

He thanked me at dinner for starting to do this simple thing with our kids because he knows it has saved a lot of frustration, impatience and yelling from happening in our home. (By the way, I'M the yeller,... not him)

My secret?

When the kids are whining or being rude or not speaking how we've taught them (i.e., please, thank you, etc), I simply ask them to "try again."

I'll say that over and over until they ask me the right way.

We've done this enough now that they get it and are usually giggling when they rephrase their question or ask it with a better attitude.

Also, I'm stubborn. (my pooooooor kids)
So, I don't budge until they've tried enough times to get it right.

There's no nagging, no impatience, no frustration.

Just, "try again."

And, then we all get what we want.

I get polite kids who are learning how to respect adults and get to experience grace.
They get a calm, kind, gentle momma who is learning to show grace to others (and herself!).

Win-Win

Try it out in your home. I bet it'll work for you, too.

-kt

Why We Let Our Kids Go Trick-or-Treating... and other thoughts on Halloween

 Halloween is a very controversial topic among Christians.

*I am not suggesting that this should be the standard for your family. I believe that each Christian should ask the Lord what he/she should do and should base their actions on that.*

My husband and I have done that. We are comfortable with our decision.
I will not judge you for your decision... please offer me the same level of respect.

So, with that said, here's our thoughts on Halloween.

I personally am quite uncomfortable with most Halloween decorations. I place pumpkins around my home, but it pretty much stops there. I don't believe in ghosts or zombies and I don't want my home to be covered in those things. I want my home to always be inviting, warm, loving, and traditional Halloween decorations do not reflect those things.

While we obviously don't want to train our children to participate in evil, we do want to train our children to get in there and actively fight it.

And, while you can make a point by standing on the sidelines, you're not truly in the fight unless you're IN the fight. You can't win a battle if you don't participate.

Jesus didn't sit on the sidelines. He called out the demons. He ate dinner with hookers and corrupt tax collectors. He looked evil in the face and, when it seemed all hope was lost, he rose again and conquered it forever. 

He got his hands dirty.

I was the kind of kid who, if kept away from something "bad," began to fear it. I still fear the unknown. I wish that instead I had someone walk me though scary or controversial situations to show me how to handle it and how to stay above reproach in the midst of it.

Fear and lack of understanding is NOT how I want my kids to face unknown or new situations.

We will accomplish so much more by taking our small children around and showing those who hoped to scare them that our kids are already wise enough to know there is nothing to fear by their decorations and costumes because they have Jesus on their side.

I want my kids to be able to walk into every situation armed with the power of Christ and the ability to bring light into it. And, I want them to show others that we can always have fun and experience joy with them.

I will not send them into situations unarmed or alone. But, my husband and I can walk with them through this and teach them how to be "in the world but not of it."

It's possible.

And, I don't think I'll do it perfect every time, but thankfully God shows me grace and I trust that He can protect my kids even when I fail.

I know that as they grow, situations are going to be a lot harder to discern than 'should I let my kids put on a cute costume and get free candy?' But I believe the principle will remain the same.

Instead of staying in our own little bubble to make a point, we can go out on a night where most of our neighbors are outside, walking around, open to talking and getting to know others. We can introduce ourselves and let them see that we're humans, too. We can be friendly and kind and compliment their children's costumes. We can laugh with them and share some sweets. We can make memories with them. We can set a good example by having fun and creative costumes without the scary/gory aspect. We can "do life" with our neighbors.

We can get our hands dirty. 

What if Jesus had said, "Oh geez, that guy is demon possessed! That's too much darkness and I won't take part in that, because that's just too much! Obviously Satan has won this round..."? I don't ever want my kids to think there is so much bad that the good they can bring isn't worth getting into it.

I don't believe that by trick-or-treating I'm being passive and exposing my children to evils that they don't yet understand. I KNOW I'm being intentional and using this to teach them spiritual principles... and letting them have a little fun and a little sugar-rush along the way is a plus.

If we don't stand up and fight evil, bring light into it, show it that it cannot win, who will?

I believe that by ignoring it or fearing it, we give it more power. We need to get involved. We need to participate. We need to go in armed with God's power and spread His light. We won't be able to share our opinions about the origin of this day if we aren't around anyone who will hear it. And, we'll never be able to speak to someone on a heart level when they are feeling judged. Do life with people. Love them where they are. Stay above reproach in the midst of controversial situations. Be the light that Jesus wants us to be. A city on a hill cannot be hidden. Hide it under a bushel? NO! Let it shine.

-kt

Three

I've only been the mom to three kiddos for a month now, so I don't claim to be an expert here, but... here are some of the things I've learned this past month.


1. Us parents may be outnumbered now and we may have had to switch from man-to-man to a zone defense BUT we still have four hands between the two of us and there are only three of them so we still have the advantage... right?

2. 2-year-olds enjoy having a baby in the house for approximately 15 minutes each day. The whole rest of the day is spent in agony over the fact that they no longer can command mommy's full attention at any given moment.

3. Number 3 has the ability to know the second you are about to put food in your mouth and will demand to also be fed at that precise moment. Count on it.

4. With all the baby gear finding it's way out of storage, my otherwise uncluttered house is beginning to feel quite claustrophobic. I feel another round of purging, garbage and donations coming on... if only I could find the time...

5. Being SUPER INTENTIONAL about spending time with your spouse becomes even more important. Merely being roommates is unacceptable. We must be a team. And there has to be life-giving friendship and romance between the two of you or these days can get long and lonely.

6. Making sure the older kids feel connected to the baby at least once a day is invaluable. Letting them "hold" her or help with a diaper change (read: throw away the dirty one) makes them feel like they are important and they seem to love her even more in those moments. And, it helps them be more patient when she is taking me away from them temporarily.

7. Having some alone time in the morning before the older two wake is even more important for me now. I gotta get my game face on before the littles attack my morning. Otherwise, I feel like this...

8. Let people love you. Having help is not a sign that you can't do things on your own. It's simply an expression of the care that others have for you and, frankly, a blessing. Accept it.

I'm sure I have many more lessons coming my way, but this is all I have time for right now.
-kt

The Children's Hospital and a Road Trip!

We headed in for our Extended EEG at the end of April.

The goal was to find out what is exactly happening in her brain so that we know what to do next as far as testing and treatment goes.

I cannot say enough good things about the staff. You have to be a saint to work on an inpatient unit at a children's hospital and the staff at the hospital in Denver are no exceptions.

Fortunately, the Little Miss was able to keep herself busy most of the time and our frustrations were kept to a minimum.

Unfortunately, the neurologist told us, "She's kind of a mystery." So, we're on to the next set of testing.

But, this neurologist has a plan... and compassion... and the goal of making her well (as opposed to simply medicating her, like her previous neurologist did).

And, for that, we are grateful.

The Little Miss was also grateful that her Nonni could come play with her when mommy needed to talk to the staff.

(oh, and the campus was beautiful)

Only one day into the test, and she was worn out. The neurologist decided very early into our stay that continuing the EEG would not provide any additional insights into her case, so he let us go after a blood draw that they'll use for genetic testing.

I was pretty tired, too,... and also grateful that my mom was around.

The good news is that this neurologist has a plan. He really seems to care.
The tough news is that this is not going to be a short journey. Unless God chooses to heal her (which we're still praying for), it looks like this may be a long-term battle for her.

Having a sick kid is not easy. I would give ANYTHING to be able to fix her.
But, her little spirit cannot be crushed. She is able to laugh and find joy regardless of her circumstances. She had electrodes cemented to her head and chest and cords coming off of those electrodes which were all drawn into a box which she had to carry around in a backpack that was connected to a computer and what did she do??? She put the box in her backpack, put the backpack on, put on her super hero cape, and "flew" as far out into the hallway as the cords would let her, bringing a huge smile to everyone who passed.

Trying to shampoo out the cement when we were released

That's my girl.

When we got to leave the hospital.

She is only 2 and yet her spirit and personality speak volumes.

I was sharing how overwhelmed I feel by the fact that we may have a lifelong journey ahead of us and how it's going to affect each of us differently. My husband's daughter has seizures. The Little Mister will grow up with a sister that has seizures. Ev may never be allowed to drive. Our new daughter (coming in August) will never know life apart from a sister with seizures. It will effect what we do, how we play, maybe even how we eat. But my mother-in-law gently reminded me that this is her normal. It won't be weird to her or her brother or sister that she has seizures because it is their normal.

I hope that Ev's healing from God becomes part of their story, too, but if it doesn't, I hope that John and I can together show our kids that even though tough things happen, our family's "normal" is to trust that God has allowed it for a reason and to trust Him always.

I hope they don't see me mourn what won't be true in Evie's life, but instead rejoice over what is true... she is an otherwise normal, vibrant, affectionate, sweet, rambunctious, active, beautiful girl who brings joy to people.

This journey is hard. Sometimes I get weary in the unknown. Weary from the medicines, the appointments, the tests. But, we do have much to be thankful for.

Including people in our lives that allow us to be sad for her sometimes and grateful others.

There is no perfect way to handle having a sick kid. I could let myself get really bitter (and don't let me fool you... sometimes I really struggle!). I could just be floating on the "it could be worse" cloud. But, the truth is that some days are better than others. Some days I need grace for being bitter and some days I need to simply be in awe of the fact that she is a miracle.

I don't claim to have this figured out. 

I'm sure I never will.

But I am grateful for each day with her.

Even the tough ones.

I hope that when people look at us on our good days, they see "the peace that passes all understanding" that comes from God alone. (Phil 4:7)

And, I hope that on our bad days, they are able to see that we are human and need grace.

The end...

It's the end of an era.

The Bible tells us that there is a time to mourn...

...this is that time.

I'm turning 30.

BUT, instead of focusing on the fact that my 20's are over and how sad that makes me, I think I need to reflect on all the awesome that took place during these 10 years.

*DISCLAIMER* This is a very personal post. I wrote it more for me... so I won't be offended if you stop reading now.  :)

Year 20
I began my 20's living with the BEST roommates. Women I really admire.

I was dating the man who I would eventually marry.

I was studying a subject that really interested me at a school where I loved the ministry I was apart of.

I was raising support to move to Lake Tahoe for the summer.

I spent that summer with some of the most amazing people I've ever known and that was where God stirred my heart to head overseas.

Year 21
I was able to travel. A lot. All over the States. From the west coast for MPD training, to the South to visit friends, to the Southeast for Spring Break and to visit my sweet Great Aunt.  (Not to mention JesusLand - for real! There were camels and everything!)

And, then I kept traveling. I got on a plane in August and headed to CO for a week followed by moving to the other side of the world. Literally.

Oh the adventures we had! Learning a new language and culture. Exploring. New foods. New friends.  New memories. Priceless. I know I'll never again experience anything like that. I'm so grateful for that time. If nothing else, I feel like I walked away from that year with such a bigger understanding of God and His love for ALL people. Invaluable.

During my time overseas, year 22 started...

Year 22
More traveling, more exploring, more new friends.

Don't mind me looking like a mess... it was humid!

Returning to the States was hard. It was so difficult to bring the person I had become and the experiences I had back to people who hadn't seen me evolve in those ways, and therefore expected me to be the same girl who left. I just wasn't.

Some friendships were strained, others were blossoming.

I got a job I ended up LOVING as a barista at Starbucks. Seriously, best.job.ever.

Year 23
I officially moved to Green Bay.

John proposed.  :)

I graduated from college.

We were planning the wedding while he was living his new-found dream of working with livestock in the mountains.

And, then he returned and we got married!

Year 24
One of the best.

Even though being married brought challenges and we lived in our fair share of crummy apartments, we had an awesome first year.

I was actually using my degree in the Psych world. It was a hard job, but I took comfort in the fact that this was what I trained for.

Some girlfriends and I started our Core 4 - which ended up being one of the BEST things that I've ever being apart of. Ever. I'm so grateful.

New friendships were forming and growing.

I joined the worship team at church.

God was definitely starting to build a foundation of authentic friendships and great leadership in my life. I had no idea.

We moved.

And, apparently I didn't take too many photos...

Year 25
Very shortly after my 25th birthday, we found out we were expecting our first baby.

My Core 4 changed a bit.

I started in a Titus 2 Homemaking Group. Loved every minute.

We moved... again.

We had the Little Mister show up early (but not too early).  :)

I started playing around with a nice camera.

Year 26
I quit my job to stay home with the Little Mister and do in-home childcare.

My Core 4 and I got closer and closer. (That'll happen when you all have your 1st babies within 6 months of each other)

We moved again.

Year 27
Oh, you know, I just ran a marathon. No big deal.

And, then we got pregnant with the Little Miss.

Her pregnancy was pretty rough and we had to say goodbye to my sweet grandmother and my great-aunt.

We made even more memories with our sweet friends.

John got hired on by a camp in Colorado to be their Equestrian Program Manager and we started raising support.

And had the Little Miss.

Year 28
Ev went back into the hospital shortly after my birthday which post-poned our next move temporarily.

Then, we moved... again.

This time it was into my in-law's house so we could save up some money while we raised the rest of our support.

We spent the spring there and then...

...you guessed it. We moved.

Out to CO this time to work as missionaries at a Christian Camp.

We had a blast getting to know our sweet new hometown and the ways of the camp.

We came back to WI for my Gparent's 60th Anniversary celebration and we had Evie dedicated by my Uncle David.

And, guess what? WE MOVED AGAIN.
(but this time it was TOTALLY worth it)  :)

One tough thing from this year: Evie was diagnosed with seizures.

Year 29
I spent a lot of time with the kids at the park and the library, getting to know tourists and locals.

We thoroughly enjoyed the busyness of camp and town.

Friday horse shows were my favorite.

And, we got to play - we snowshoed, hiked 14'ers, camped out, went to the hot springs, explored on horseback, I learned a little more about training horses and was able to contribute to camp by playing photographer.

My family came out to bring my nieces and my cousin's daughter to Horse Camp. They were here for the 4th of July, which is THE BEST here.

We were able to travel back to WI for my grandmother's funeral, the annual family trip with John's family, Christmas and John's grandpa's funeral.

I did have a little accident with the truck, but God provided through it.

Some sweet friends came to visit.

SURPRISE! We moved again! This time onto camp property.

We also added a little lady to our family.

So, I guess, all things considered, saying goodbye to my 20's isn't the worst thing.
I've come a long way... and I've had awesome friends and family on this journey with me.
I'm so grateful.

And, I'm excited to see what my 30's will bring!
I guess we'll see!
-kt