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. 

Potty training.

This is the front of my fridge....

When Skyler and Nevin both turned three we started potty training. I had tried to train Skyler at two but it didn't go over well. The more I researched the more I realized boys do better later. He had just gone from first born to big brother and the "terrible twos" were setting in. I waited a year and he was pretty easy at three. With Nevin I didn't attempt until the summer after he turned three. By the time school started he was pretty much in undies. I figured I would do the same with Gavyn. 

The fall before he was going to be three I realized he would be starting school in February right after his birthday. That way he wouldn't lose time with therapy, he would transition from in home to school seamlessly. Nevin had been different because we moved and... That's another blog. I thought maybe he would be ready and we could try, take it easy! That was a no go. We tried a couple different times from the fall to the spring and it was apparent he was not ready. 

Once he started preschool they would take him in the bathroom with all the other kids and he would sit on the toilet. I was encouraged. I figured once summer hit and his two big brothers did summer school we would take four weeks to concentrate on potty training and be good to go. 

Wrong.

I'm sitting here, eight months later, with an almost five year old, who literally just decided two weeks ago he would be potty trained. Yikes. Those eight months tried my patience like no other. 

The front of my fridge is a huge sticker rewards chart and Gavyn's daily picture schedule. 

We tried smiley face charts. Sticker charts. M&M's. High fives. Hugs. Calling dad. Anything. Everything. Nothing. Nothing worked. 

The worst part about it was his attitude. I felt verbally assaulted and abused each potty trip. He would yell. Scream. Kick. Hit. Cry. It was awful. It was also unpredictable. Some days I could ask him to go potty or his timer would go off and he would happily or at least quietly go. Other days or times it was the fit. He did great sitting on the potty at school but not going. I never heard the words, "I need to go pee." from him. It just wasn't registering in his brain. Literally.

Now I know that it wasn't registering, because after his last surgery it slowly got better. The mood evened out. The trying got easier. And finally two Monday's ago he said, "I need to go pee." I calmly told him that was great and let's get to the potty. It continued all day and never stopped. Crazy. 

It wasn't fun. There was no joy in it. It was exhausting. It did grow my patience. A lot. And honestly, I was so excited when he finally got it, but mostly I was just relieved. I don't think I could have lasted another week of being screamed at and him not going. I feel like it's a dumb thing to say, but teaching him to use the toilet might have been one of the hardest things he and I have done together. And man, have we done a lot together. Every other obstacle seemed short lived compared to the last eight months. And I'm just so glad that chapter is done.

The place I can't live

I think the first year of Gavyn's life I spent in an emotional state of:

What the crap just happened. Why did this happen. How did I let this happen. What do I do now. What else can I do. Am I not trying hard enough. Is more just more. Guilt. Guilt. Guilt. Numb. Numb. Numb. Anger.

The next few years were spent thinking more of Nevin. Gavyn really stabilized after the first year. It was rough and slow but the ER visits stopped, there were no more surgeries. He really thrived until October of 2012. And in the next few years I worried about Nevin.

Would he ever talk. Would he catch up with gross motor. Did I baby him. Did I not push him enough. Was it my fault. What could I do different. How had I failed. Why would no one listen to me. Would I ever get him into the right doctors. 

2013 was our amazingly great year. Everyone was stable. Health was good. Answers were coming. Things were good.

2014 sucked. It was surgery after surgery. Doctors. Doctors. Doctors. School. Therapy. Sickness. Good things happened and happy memories were made. But overall it was a tough tough year.

And in the past (almost) five years I have grown a lot. As a person. In my faith. In the kind of wife and mom I am. The kind of friend I am. Our whole family has grown tremendously though all of this. But there is this little place that I can go to, this place that I try not to live in. Although it is a small thought, it is consuming. I find myself going there when I go out, when I scroll down Facebook, when I hear of other families, when I think of families growing up. What place is it?

The why us? place.

Oh, it is a small phrase. It is a fleeting thought. But, oh my, how destructive. 

It comes in my mind scrolling Facebook and seeing the "perfect" families with perfect kids. The ones who seem to have so much fall into place. 

Hearing of that two-year-old who potty trained in two days and doesn't even wet the bed.

The kids getting honors at their school.

The families who never get sick.

The ones who have baby after baby that are healthy and whole. 

Even the families who have a boy and then a girl. 

The people who never seem to suffer.

Why must so much suffering be placed on my family and my friends? Because let me tell you, my dearest friends have experienced their share of suffering as well. And it all makes me angry. Very, very angry. It's a place I try not to live in because it would consume me. I remind myself we all have our struggles and everyone's biggest thing is their biggest thing. I try to offer grace and not be judgmental. But some days it's really hard to do. Some days I don't want to hear about other people's perfect lives. And I have to close Facebook. I have to stay home. Sometimes I even have to walk away from people. Because I can't handle people pretending or really living in perfection. My life is way too messy for that. My families struggles are too big for that. And then I feel like we are too much. And I know that is a lie. We aren't too much. We are awesome. But we can be exhausting and we are exhausted. We might go two years without a surgery and we might have five in one year. We might go six months with no sickness and then be sick every day for weeks and go to the ER three or four times in two months. That's my life. That's my reality. And when I start to think, why us? Why my kids? I have to stop myself and remember that life is tough but we are great. My kids are awesome. And somehow we will make it through this crap. 

Some days

Some days are just those kinds of days. You know? This was my schedule today....

Wake up 6 am. I get up at six to have alone time, drink coffee, read my bible and journal/pray. I would say 50% of the time a child is already awake during this time. This morning it was Nevin. Thankfully he was happy and played trains in the playroom while I sat.

6:30: wake the rest of the crew that's still sleeping

6:30-7: my job is packing lunches, pouring milk/juice mixed with probiotic, making breakfast, passing out vitamins, seizure meds, and applying essential oils to children. Ryan gets the children dressed and corralled. Then gets himself dressed during this time.

7-7:30: get children set down to eat breakfast. Clean up the kitchen mess. Get myself dressed.

7:30: child #2 gets put on bus and husband #1 leaves for work.

7:30-8: finish getting the littlest boys ready (in case they slept in) and myself. Guzzle down coffee and generally flit around the house tying loose ends. 

8-8:15: kiss child #1 goodbye, tell him to make good choices and that I love him. Put him on the bus. Put child #3 and #4 in the car and drive to preschool.

8:30: drop off child #3 at school.

8:30-9: drive to our church in West County. Drop child #4 off at his classroom and go to my moms meeting for the next two hours. Which consists of drinking coffee, eating yummy breakfast, listening to a devotion and speaker, share life and laugh. All around relaxing and fun. 

11: pick up child #4 from classroom, buckle him in the car, take off for preschool.

Hit every light on the way to preschool. Arrive five minutes late. Be the last mom to pick up. Great. Child #3's face is pressed against the glass door awaiting our arrival with his teacher. 

11:35: have two kids in the car, pass out their lunch and water, grab a granola bar for myself.

11:40: slam on the brakes for a red light, sending kid #3's lunch flipping upside down on the floor. Convince #4 to share half his lunch. Pass out cereal bars. 

12:15: arrive at the children's hospital and fight for a parking space. Pick out the essentials for the diaper bag and purse, load them up and unload children. Hold firmly to their little hands and drag them through the parking garage jungle. 

12:20: check into the clinic and wait for ten minutes before being called back.

12:30: Cerebral Palsy clinic time. For the next two hours we see the PT, OT and nurse practitioner. They have Gav walk, run, shoes on, shoes off, up and down the hallway while making videos of him. Then they have him touch fingers to fingers to head and video that. We discuss his seizures, his recent brain surgeries, how he is doing in school, his moods, everything Gavyn. By the end he is exhausted and so am I. 

2:00: back in the car and fighting through the parking garage. Pass out granola bars, tell the hubs I can't talk on the phone, inhale a granola bar of my own.

2:20: arrive at kid #2's school, unload the littles from the car, tumble our way into the office and wait for Nevin. By 2:30 we are back in the car with 3 of the 4 children on our way to PSKids, therapy.

2:45: Somehow hit every light and arrive 15 minutes early. We totally deserve Lion's Choice ice cream cones for that, and lucky us, it's right next door. Get three mini cones and a large, spending a total of $2.15. You know mini cones at Lion's Choice are .25, right? Heck yeah! 

2:55: go into therapy and head for the bathroom, three people pee and one gets a new diaper. Back in the waiting area by 3. 

3:00: chat with speech about Nevin's speech time at school, decide she will have a pow-wow with that therapist for me. Chat with OT about Gav for a good 15 mins. 

3:20: sitting in waiting area with the littlest until 3:50.

3:50: meeting with OT and ST about boys. Nevin is great. Make a plan for Gav. Load children in the car.

4:13: on the road again.

4:30: home

Then begins the unloading of the car. Unloading back packs. Clean the mess up. Hang up the coats. Return messages. Start homework with the oldest. Start dinner. Set the table. Pour the milk. Pass out the evening vitamins and seizure meds. Organize the rest of the homework for the evening. Sit down for dinner. After dinner it's clean up time. Play time. Reading time. PJ time. Homework for kid #2. Growth hormone shot for kid #3. Bedtime for #3 and #4. Math time for #2. Bedtime for him right after. Finish homework with #1. Him to bed. Me to blog. 

8:00: kid free for two hours before I crash.

What does tomorrow bring? 6:15 am in the car on the way to the children's hospital for an MRI.

Just one of those days, ya know? 

Community

Community... I sort of feel like it's a buzz word now. You have so many different "communities" to be a part of. Church, work, the gym, school, the coffee shop, your online communities, neighborhood. But through all these micro communities that are available to us, we can lose real, true community. 

When Gavyn was born and we were thrown into the deep end of special needs, I thought we had community. In a small way we did, but not really. We had our online community, but that's not good when you need someone to bring you a meal. We had church community, but we weren't very invested in anyone and they with us. They might drop off a meal but they weren't going to run an errand or clean my kitchen. You see, that's what real community is. 

Real community is rolling up your shirt sleeves and getting into the dirty of people's lives. It's listening to the hard parts, all of them. It's cleaning their kitchen or doing their laundry when they've been sick. It's stopping by with a meal or coffee even when it wasn't asked for. Real community is about investing in others lives. It's one of the most rewarding things I have learned to do over the last five years. We have gotten deep down in people's dirty lives. It's tough. It keeps you up at night. It also fills you with joy. When you see the growth, when you see the dots connecting, it's rewarding. Being the hands and feet of Jesus, there is something to it! It does something for your soul. To open your messy house, to not clean your house so you can help a friend. Maybe grab take out for your family so you have time to make a meal for a friend who's hurting. To live in sacrificial community. 

I have invested in others lives to see them grow in Jesus. And now, when I need them, I see them investing in me for the same reason. I don't do it to get something though. I'm doing it to give something. We all need people in our lives that we can call at 3am with an emergency. We all crave and need real people, who love us for who we are, and are willing to stick around and see us grow. I encourage you to seek out those people, the people you can invest in. When you open your heart to it you will be surprised to find others doing the same for you. 

Best friends

These two...

Destined to be best friends. Look at that proud little smile. 

One brother has been through 3 hospital stays and 4 brain surgeries since the other was born. 

And little brother was always there to help push big brother along.

They love to be silly.

Little brother follows big brothers lead.

They are perfectly sweet together. 

My heart hopes that they will stay forever friends. All four of them. 

Tina

See that person there on the right? That's my best friend Tina Bradford. I decided she would be the topic of the blog today. Why? Because she's awesome. We have a running joke that she's my wife because I can't do life without her. I mean, the kids dentist office pretty much assumed she was my partner for the first year of going there. When we would go out with the kids, people would ask her questions or speak to her as if she were my kids mom. I have to ask her what my prayer request is at bible study. She always gives a better one than I can think of. I guess I'm not broken in half but thirds, she and Ryan are my better counterparts. 

We didn't grow up together. We didn't go to high school together. We didn't even meet until four years ago. We met at a small group in our church. Ryan and I had joined the year before and for some reason when Matt and Tina came, I felt compelled to get to know her. I'm not sure why. We seemed to have zero in commen. I was a married, stay at home mom, with three little boys. She was a married twenty something, going to grad school at WashU. Her and her husband were from Alabama and weren't planning on staying in StL. She later told me she kept coming to the group telling herself, "well, I know Amanda likes me." 

The following fall I was getting ready for the craziest school year ever. This was my schedule. I knew a little from prayer time in group that Tina suffered from migraines, but not a lot more. She shared she was taking a semester off school for her health. My hubs spoke up and said, "well, if you aren't doing anything you need to come help Amanda." If I remember right her Matt agreed she should. Basically, our husbands set us up. 😉 I don't remember how it went down but for the next few months, every Thursday Tina would come hang out at my house. We would take care of kids, run errands, get starbucks. I remember a lot of driving around in my car chatting. 

And during that time something amazing happened. We got vulnerable with each other. We got real. We laid it out. The good, the bad, and the really really ugly. We realized that we had a lot in commen. Yes, we seemed like an unlikely pair, but in reality we were the same person. And in finding our common bonds we helped pull each other out of darkness. 

You see, we both suffered from pretty severe depression. Mine had gotten better over the years but still loomed. Tina's was pretty bad at the time, and just living life together made us better. It helped us laugh and be goofy. We could remind each other that God was good. That our husbands were trying hard. That people loved us and the sun was still shinning. 

We were each other's go to person. When my kid was having brain surgery, Tina was there with Starbucks and a hand to help. When her adoption process got rocky, I was there to take her out. "Only Peeta can make this one better." We just did life together, all of it. Cleaning house, grocery shopping, packing, hospitals, babies, road trips, everything. 

Tina Bradford isn't just my friend. She isn't even just my best friend. She's an extension of me. There's no replacing Tina. She isn't just dear to me, she's dear to my children and husband. After she and Matt moved to Boston, Ryan often says, "Man, when is Tina coming back?" If something is hard at home. When the kids have a success (a good grade, a picture they drew, potty training) they want to tell Tina. She is the sister I never had, the crazy aunt the boys can depend on and the person my husband trusts to help me feel better. 

Everyone needs a friend like Tina. And to think, if I would have only sought out people just like me, I would have missed the greatest friendship I will ever know. I love you Tina! 😘