Thankfulness

I haven't blogged in a while. There are few reasons for this. The main reason is that it hurts to write sometimes and the other times I feel as though I have nothing to say. But I made a commitment to myself to share our journey and that is what I intend to do. 

As you all know, Thanksgiving is tomorrow and of course it is a time to reflect on what you are thankful for and gorge yourself with food. Some watch football and most spend time with their families. We will be with The Ireland side hopefully NOT watching football but the gorging will happen. 

I will reflect on how thankful I am. 

I am thankful for Neal, for a man that loves me and our kids with all of his being. I am thankful that God brought me a partner that can be both the calming agent in my hectic life and a formidable opponent when I need to be brought down a notch or two... Or three or four... I am thankful that he worked hard to become the Man he is today and that he has overcome many obstacles. Most of all I am thankful that he looks at me as a good mother and his best friend when I feel like I am shattering under the pressures of life. 

Of course I will feel thankful about Max, our feisty one year old. The baby I did not think I was ready to have. I will thank God for his knowledge and plan.  I will humbly admit I know nothing about raising a mini me (stubborn, strong willed and extremely passionate) but am thankful that I have education and family and friends and God that will guide me every step of the way. I am thankful for Max's energy and his zeal and his love for Mickey Mouse and cuddles and I am even thankful for his dangerous "Battle Cry." 

Tomorrow I will be thankful for my friends.  All of them but more specifically the ones I have met on this special needs journey. I will be thankful for Cassie, her kind heart and soft words. Her ability to get me without having to explain myself at all! I will be thankful for Amie, who also has a child with severe low tone. I will be thankful for her generousity and the way she listens to me when I need to just vent. I will be thankful that I can say to her "you too, I thought I was the only one." I will also be thankful for Staci, a very new friend, but a friend that has stepped in to an incredible role very quickly. I am thankful that she says it like it is. That she listens to my fears with tears in her eyes (because she gets it) then tells me to buck up and deal with it! And also brings me healthy snacks. On that note I am thankful that Amie and Staci are crunchy/granola types and try to help me find healthy alternatives but I am also thankful that Cassie and I can talk about binge eating and feeding our kids junk food. 

I am thankful for family. My parents who love my children tremendously and are always always available to help. And my sister, even when she makes me crazy, she loves us and helps out all the time. And we share a love for all things pop culture! Especially the new Alexander Hamilton Musical. 

And for Neal's Family. And the support and love they give us. They helped us get a van and are always a phone call away if we need.  I have to specifically say I am very thankful to my sister in law Beth who is also one of my very best friends for always listening and offering incredible advice. 

Of course I am thankful for The Children's Spot, Variety Charities of Greater KC, and First Steps for all having such a big part in Charlotte's development. 

And... I am so incredibly thankful for my Lottie. She has worked so hard to meet the milestones/inch stones she has met. She endures multiple doctors appointments, therapy and tests and does most of it with out the slightest complaint. She is pure joy to all who meet her and we know she will continue to amaze us and the world. Because God is doing immeasurably more in her little life than we can ask or imagine. 

After Thanksgiving we will face another MRI and our blood will be drawn for the exome test. I will blog my fears and experience with all that after I come out of my Turkey coma on Friday. Happy Thanksgiving readers. 

A Top Ten Kind Of Week!

We had such an amazing last couple weeks mand my brain is not quite sure how to process all that has happened, let alone find the words to eloquently share it all with you. So I have decided to let the pictures and a top 10 list do the talking and maybe I will be able to elaborate more on a future blog. So for now My Top Ten List of Immeasurably Mores:

10. We watched an incredible kids movie about feelings and memories and how sadness is important in order to feel Joy. It touched me on a very personal level and I will be sharing more about all the "feels" it gave me in a later post.

9. We recieved news after a 3 month wait that Charlotte was chosen to be a part of Children's Mercy's Exome Sequecing Trial. Actually Neal, Charlotte and I are all enrolled. We will have our blood drawn in December and we will then wait at least a few months for the results. This is something we have prayed about as it may give us the answer to what is causing Charlotte's low muscle tone and delays. All of this prompted me to buy this: 

Wish me luck!! 

8. Charlotte finally showed off her crawling skills at the SPOT. Thus proving Mommy is not a liar lol and she really does have this rough army crawl down. (When she wants to.) 

7. Max had his first haircut. This was bittersweet for me as I watched his first curls fall to the ground. Also becuse he sat up so nicely in the seat and didn't need any of mommy's support. Not the same experience we had for Charlotte's first haircut. But both were equally special and equally heartbreaking as I'm watching my babies grow and change. Side note: Sheer Madness is a great place to get toddler hair cuts, why? Two words: Mickey Mouse. They play it on TV's right in front of your child. It was a sweet relief to have Max's third parent there. 

Before

After

6. Neal's parents celebrated their 40th anniversary. If it wasn't for their love, I would not have my husband and our two sweet babies! So Happy 40th Ron and Peggy! It was cool to see pictures from their wedding for the first time, for Neal and I both. Apparently their wedding photographer forgot to take the lens cap off and they didn't get any professional pictures. Neal's sister found these slides in Ron's Mom's basement. 

5. We found an inclusive park within 10 minutes of our house! Inclusive in this case meaning friendly for all kids, including those with disabilities. We had a blast there and can't wait for many more park days to come. 

4. We recieved this in the mail: 

If that is to tiny to read it basically says that our insurance company has approved Charlotte's customized manual wheelchair!!! Without a diagnosis, this is big! We should be getting Charlotte's chair within the month! 

3. We discovered Variety Children's Club of Greater Kansas City and their amazing Executive director Deb. Already we feel a part of something so much bigger than ourselves and we are seeing kindness in a way that we have never seen before. We went to our first event on Halloween and had a blast.

2. Variety and Rockhurst chose Charlotte to be a recipient of a Go Baby Go car. We were over the moon thrilled and couldn't believe they wanted to give us this gift! We spend a lot of time fighting for inclusive equipment or paying big bucks for inclusive toys and here comes Variety willing to give us and 19 other toddlers their very own battery operated cars adapted to their needs by the engineering and PT students and multiple volunteers (including our awesome PT from the SPOT, you are amazing Bev!!) And to top this all off they asked Charlotte to be on the local news the day before the event to promote Variety. Here are some pictures of the News day and the Go Baby Go build on Satuday and a picture of Charlotte at home with her own special car! 

 

And ......

1. My favorite part of the weekend was a last minute surprise. As we were leaving the Go Baby Go event, I grabbed Deb to say thank you and to tell her that we were leaving to go to Charlotte's friend Mason's benifit and how much I know they wanted to be here. And Deb got an excited look on her face and said that she thought she had an extra car I could take to Mason. It was magical. We ran inside and grabbed the car and headed to Mason's carnival. The whole ride I was shaking knowing that I would be bringing one of my favorite families something that they also very much wanted. And not only that I would be giving it to them for Variety at Mason's special event. Presenting the car to Chris, Amie and Mason was a moment I will never forget. I have never had an experience quite like it. Here I am another special needs mom who just recieved an amazing gift for her child and I was getting to pass on the same gift to a close friends child. Amie and Chris's tears of joy said exactly what was going on inside of me. This amazing feeling of thankfulness and kindness and the joy of getting to share it with people you love. Now Charlotte and Mason (our once immobile low tone babies) will be able to cruise the driveways together, like the regular 2 year olds they are. 

It Takes a Village : Friendship Part 1

I have been thinking a lot about my friends lately. I have always seen the necessity in friendship but have never understood its depth until recently. There is a common phrase that everyone uses that you can choose your friends and not your family. And I love my family very much and will post about that some other time but this post is about my friends. 

The thing about that quote is I'm not sure if I always choose who my friends are, I think sometimes life circumstances chooses them for me. And in my belief system God has his hand in it. He knows who we need and when. Toxic friends can still easily infiltrate but if you look close enough the perfect people are amazingly right there when they need to be. At just the right time. And things easily fall in place. At least that has been my experience lately. 

A period of Lonliness 

I haven't always had the perfect friends readily available and I have felt like in some chapters of my life, I didn't have as many close friendships as I wanted and I often felt very lonely. I had many "friends" but nothing very deep. I even went through a hellish year with plenty of grief and pain and still did not have a lot of friends to lean on. I did have a few that came through, but many disappeared. This is where I say Thank you God for my family. They were what I needed in that moment.  Still I prayed many nights that God would bring me a Christina to my Meredith. (Greys Anatomy reference, google it) 

I had close moments with friends but no really close friends. Looking back I can see that In that time God was teaching me how to love myself and depend on him. Also how to love my husband and make him a best friend. A lesson I would have to learn in order to be a good friend in tough times later in the future.

A Planted Seed

A few years ago I remember being a counselor at a retreat or church camp and the speaker or youth minister , I think it was Jonathan Trotter said something to the effect that relationships become stronger when faced with adversity together. That sounded lovely at the time but I had not really faced deep pain or grief or real adversity and did not yet understand what that meant. But it stuck with me, God does that often, it's a part of the unknown supernatural magic of God. 

Just like my love for an old accapella song from my childhood that came to mind while praying one night. I may have mentioned this before but it's worth repeating. This particular song is based on a scripture in Ephesians 3:20. "To him who is able to do immeasurably more than all we ask or imagine." 

The AHA Moment 

The thing is I had just told God that with out a diagnosis I had no idea what to pray for in regards to Lottie's future. I was lost and speechless , yes me... Speechless. And so I sat in silence and cried and he answered me with that song. Not in an audible God voice but actually in a memory of my mom singing along to that song in our house. I'm sure it was being blasted from a tape player. It was my clear answer and now we pray that verse over our kids and other people's kids every night. So I know God plants words in our minds only to have them blossom when our lives are ready to fully hear. 

Of Course Extroverts Need Friends! 

Some may be saying, it's easy for you to talk about friendship because you are an extrovert and an open book. And maybe they are right. I thrive with social contact and love sharing my life with other people and I am genuinely interested in other people's lives too. But this goes beyond me, it's somethings I am sure of. All of us need people! All of us! 

I could go back to Adam and Eve but either you have heard that story 100 times or maybe just don't want more preachy Katie. I'll spare you this time. But if you look around you, even the guy stuck in his house playing video games forms relationships with his fellow gamers. Tom Hanks needed people so bad in Castaway that he made a volleyball his friend. 

As much as I am a social being. I have NEVER needed people the way I have recently. And as usual they have showed up at just the right time. I have many friends that pre date Charlotte and low muscle tone that I still feel really connected to and love them very much . And they are in my world and a part of my village too. 

But this blog series is more about the friends I have met along this journey the "special needs journey" about 2 new friends, a bunch of online friends and about one friendship that has evolved, strengthened and changed profoundly through this time. Spoiler alert that last friend mentioned is part of the family I married into. So again life circumstances pushed us together. But more on these awesome women in Part 2. 

But to sum this part up , I found the most perfect quote while reading a fantastic post on themighty.com from a mom who has faced a very different battle than myself. But writes about her role and the people she has met along the way. This is the quote that stuck out to me and made me want to write a blog about my friendships. Don't just graze over this really let the words soak in. She says, 

"All of this reminds me how much our journey is about others. We aren’t alone in a cage. We’re part of a community where we all need someone"

You can read her awesome article here: http://themighty.com/2015/11/when-you-become-the-mom-others-turn-to-after-a-childs-diagnosis/#ixzz3qR3NLtZc

The imagery of the words "aren't alone in a cage" really spoke to my heart and I felt this sudden love and bond for this stranger that wrote these words and the beautiful women, my friends , that build my community. And as always a BIG thank you to my sweet Lottie for giving me the opportunity to build these friendships and understand true community.