Vote for Gavyn

https://www.friendshipcircle.org/bikes/2015/02/gavyn-s/

Above is a link to an adapted bike giveaway. Within the last few months Gavyn has been able to ride a bike like this at therapy. We were thrilled and so is he. He loves to ride that bike around the track with his PT! I am on a mission to try and get one for him. They are extremely expensive though. Would you please take (literally) two minutes to go vote for Gavyn S.? The more votes he has the better chance we have of him winning this bike and being able to ride with his brothers this summer.

His Mercies

I mentioned the book I've been reading before, 

It has rocked my world. We've been reading about slowing down and not having a hurried heart even in the midst of the day. I'm trying to focus on that and also blessings, small blessings. I'm a cynical person by nature and over the years it has gotten worse. I have sort of had a reason to get more cynical, right? I am realizing that I tend not to even notice the small blessings though. I sort of shrug them off and move on with the day. I'm too overwhelmed by our families big picture to see the small picture most days. It is turning me into a very judgmental person. 

In our book the author shares a story of sitting in his backyard during the winter months. He was trying to unplug and take it easy, listen to God speak. As he sat he noticed a bush in his yard full of berries. He thought that was odd in the winter. Then a little bird came and ate one of the berries. He realized that not only was the bush God's provision for the birds in the cold, he had provided more than the birds would ever need. 

It got me thinking. How many berry bushes are in my life that I have missed over the last year. Within twenty four hours yesterday God revealed quite a few to me. 

I was planning on going to my dad's house to have him help me install some software on my computer. I realized it would be dinner time when I would get home so I decided to prep the meal. As I finished prepping a big pan of potatoes and another of chicken my mom texted and asked if we wanted to just come for dinner that night. Of course! And how perfect that my dinner was now ready for the following evening? 

Little did I know that that evening I would be taking our youngest to the ER with an asthma attack. Now tonight when I will be exhausted from lack of sleep and taking care of a sick two year old all day, I won't need to worry about dinner. I just need to pop it in the oven. Berry one.

I texted my MOPS group asking them to pray for Gideon. My friend texted me back that she would put her kids to bed and come sit with us at the ER. Her baby has hydrocephalus like Gav and we have both seen the inside of the ER more times than we would have liked. It was not surprising that she of all people would offer to come keep me company. It was surprising that it was for an asthma attack though. For the many incredibly scary hospitals stays we have both had it is easy to brush off some of these things people go through with their kids. You just know the kids are going to be ok, it's not brain surgery. You know? It was just what my heart needed though. To remember that all these things are scary and stressful and that that's ok. Berry two.

When I came home from picking Gavyn up at school I noticed a little paper bag in the front door. After I unloaded the kids I grabbed the bag. It had a little note on the front, it said they heard about our rough night and were thinking about us up the street. Inside was a small loaf of delicious and still warm homemade bread. A reminder of the beautiful community I am surrounded by. Berry three. 

And berry number four is that the two littles are now so awfully calm after lunch that I might get some much needed cleaning done. And maybe even a nap. 

Trying my best to see and remember His mercies. 

Anxiety

Who would have thought a simple eye appointment could cause so much anxiety? I hadn't forgotten about the appointment, just the logistics of the appointment until this evening. Then I remembered that not only do we need to see the eye doc we need to get labs drawn as well. That was the reason I hadn't rescheduled this appointment in the first place. Remembering the logistics of the morning has set my anxiety off. Instead of falling asleep I started reliving different hospital moments with Gavyn. While I tried to get my mind off of that I started thinking about tomorrow morning. That made it worse. So, I got up and packed lunches for the day. Checked the diaper bag. Just realized I should maybe pack snacks. Probably not, they are going to have to eat breakfast in the car and the girls in the lab will give them all graham crackers and juice before we see the eye doc. See, my mind is racing.

Moments like this, evenings like this... They take me back. Back to 2010 when I hardly slept and stayed up most nights blogging or watching TV. I just couldn't sleep. I couldn't clear my head. I couldn't rid myself of the anger and terror that filled my head. So I stayed up. A lot. And then I couldn't get up in the mornings because I was so sad. The weight of it all was crushing.

Man... I hope I'm not headed back down that path. I don't think I am. I have a lot more support in my life now. My husband and I are much more in tune to each other. But things feel different lately, and not in a positive way. It's like I'm "butter stretched thin over too much bread." I need to find rest. 

But... I'm scared of rest. I'm scared of detaching too much. Because when you are alone with all these thoughts who knows what will come. Something good and sacred? Maybe. Maybe not. Maybe you just get sucked back down into that depression that held you too long. Instead of bursting victorious out the other side you get lost somewhere in the middle. 

Surely that can't happen again. This is our year, right? 2014 sucked, 2015 should be great, right? No more surgeries for Nevin... Right? I sure hope so. But, when those words pass my lips, I sure do get scared. Like maybe I jinxed us. And Gavyn. Poor sweet Gavyn. He deserves a break. He needs to heal. We didn't get a miracle bounce back from brain surgery. He needs a break. Please, no more surgeries for Gavyn. Ever. 

Yeah, right.

So, I sit in the dark and I try to process. I try to process this life I was handed. And not just me but the five people closest to me. I try to figure out how we are all going to deal with all of this and not go crazy. Or wonder if we already did go crazy. We probably did. And I just wonder... How many more routine doctor visits can I handle? 

Masks

August of 2013 a good friend of ours moved in with us for six months. She became a dear friend, she's like the sister I never had. We had so many great conversations when she lived here and have continued having those ever since. While she was here we got the idea to start an early morning bible study with a few friends. I have kept it going ever since, people have come and gone, but it has been really good. It's something I really look forward to. It is something I need for my own personal heart, not my mommy heart, not my wife heart, my heart. 

We have been reading this book, The Good And Beautiful God by James Bryan Smith. I heard about it at a leadership conference and thought we would give it a try. It has rocked our worlds. This week the chapter was about how God transforms us and the exercise was spending time in solitude. This part hit me hardest:

"Welcome to this place of solitude

Feel free to take off your masks"

Because there was no one around, I could be myself. There was no need to be clever or funny or smart. And after I came face to face with myself, I encountered God. And God - not the world, not my friends or family members - began to shape my identity.

It has made me realize how many masks I wear. Like, all. the. time. It has me wondering, do I ever let my masks down? I don't even think about. I have my Cardinal Glennon masks, my PSKids mask, church, the kids school, even with different close friends. I know why I do it too. I'm afraid if I show too many people the real me, all of me, all of my life, they will run. I'm just too much. There is way too much going on. All. The. Time. A couple years ago I would have run away from me. 

But, it is a challenge I feel I need to take on. To not always say we are fine. I don't need to show everyone every minute of every day of my real life. We all need privacy and safe places. It is convicting to be real, more real with the people who love me most though. Or even the people peeking in. Sometimes the people on the outside need to know it is ok to be vulnerable. Right? That's what I want to try and be and not to keep the mask up for self protection. 

Mom guilt

This month has been hard. I feel stuck in a rut. I asked my mom if she ever felt this way when we were little. Her response was that it's called February. Ha! She was so right. The winter doesn't feel so bad when you have holidays and parties filling your time. School break and then getting back in the groove. But you suddenly hit February and it's all blah. Mostly still too cold to be outside much. Gray and bleak most days. Only a made up holiday to look forward to. Just more of the same every day. 

On top of the blah-ness of February I get depressed with the two middles birthdays. It's a great celebration and I love seeing how far they have come in a year. And yet, there is bitterness there too. Nevin's genetic diagnosis coming on his birthday. Gavyn being so sick after his birth. It's a rough time for me. I think it is hitting me harder this year since last year was so hard. 

I'm sorry for the joyless post, it is just how I am feeling lately. Stuck in a rut. You know? 

Wake up.

Drink the coffee.

Read, journal.

Breakfast.

Lunch packing.

Dress the children.

Feed the children.

Give the children their medicine and essential oils.

Send the children to school.

Get dressed.

Eat breakfast.

Have a child dropped off at my house.

Play.

Eat.

Read books.

Do a craft.

Lunch.

Play.

Nap.

Kids home from school.

Snack.

Screen time.

Homework.

Dinner.

Bath.

Play time.

Bed time.

Repeat.

I just keep thinking about the beach. Sunrises and sunsets. Sand in my toes. The soothing sound of the waves. Soaking up the sun. A nap on a beach towel. 

It's time for this mommy to get a mommy vacation! 

22q

Nevin is seven and was diagnosed with 22q deletion syndrome when he was five years old. This genetic diagnosis presents itself differently in different kids/adults and has a very vast array of complications attached to it. Some kiddos are born with severe heart problems and 22q is diagnosed early. Other kiddos have severe speech issues (our Nevin) and don't get diagnosed until later. Sometimes after a parents child is diagnosed they themselves find out they have 22q. It's a tricky little devil! Recently the show Grey's Anatomy mentioned 22q in passing and got the facts wrong! It's the second time they have done this. We are trying to use this as a moment to get more publicity out. We need to raise awerness for all the families searching for answers. My page is already linked up to 22q where you can read more. Would you mind taking a minute to sign our petition? 

https://www.change.org/p/abc-state-the-accurate-facts-about-22q11-2-deletion-syndrome

Doctors

On Friday Gavyn had an MRI of his brain done. It was to follow up on his progress since December. He has been doing great, but my anxiety slowly began to build Friday morning until today when we met with his surgeon. I longed to hear the words, "The MRI looks great!" Gavyn needs good news, we all need good news, last year was simply too much.

And guess what? We got good news! His surgeon was pretty excited that his MRI looked good and that Gavyn himself looks good. They had a nice little chat, Gavyn gave him a big hug and Dr. E told him he loved him, we even got a picture! Which has inspired me to get pictures of the boys with all their specialists this coming year. Because these doctors, these nurses, the people on the surgeons teams; they aren't just people to us. They are an extension of our family. Without great surgeons like Dr. Elbabaa, and pediatric doctors like Dr. Andreone and Dr. Werner in the PICU, and nurses like Anne, our Gavyn might not be here or might not have the quality of life he has. It takes a lot of special people to help make our family tick.