Katie Ireland: "Special Needs Mom" ???

 Katie Ireland: Mother of Special Needs Child. Yes, KMBC news, you are right I am a mother of a special needs child and I am honored to speak about our favorite charities and inclusive playgrounds on the news. And I am even more honored that I can show off my adorable loving 2 year old who happens to have special needs. But when I saw the clip my stomach dropped. Maybe it's because I'm only 2 years into this journey and I have never seen myself identified in that way by anyone except well me.Maybe I felt a bit indignant because that is not my only identity. But I get it, you can't possibly fit Katie Ireland: Wife, Friend, Daughter, Teacher, Mother of two beautiful children, one that happens to have special needs , all in one frame. I get that with what we were talking about that was my most important label to help get the message across. 

And to the people at the KC Star, I know you did not mean to make me feel like my breakfast was coming back up when you printed that Charlotte was just diagnosed with a form of Cerebal Palsy. How could you have known that those words are still so new to us that they get caught in my throat? That we have spent two years thinking Charlotte had a muscle disease only to learn this week that it definitely originated in her brain, in MY womb, at some point in her development. 

Charlotte's diagnosis explained:

Here's the deal. I am not ashamed of being a special needs mother, I am also not ashamed of having a daughter with CP. Actually, CP is preferable to many of the other diagnoses that have been discussed. And putting our names out there so that people realize that we are here and we are proud. We are 1 in every 4 families that have a family member with a special need. CP is the number one cause of disability in Children. CP, like most other diagnoses, has a very wide spectrum of how it presents. More than likely we all know someone with CP, I know quite a few these days, and they ALL have different symptoms and strengths. 

Children with CP are like snowflakes, no two are exactly the same. 

In fact according to Cerebalpalsy.org there are 4 different classifications for finding out what kind of CP a person has. 

First, the severity, we have not been told the severity of Charlotte's condition as this is all new and really her main diagnosis is PVL (Periventricular Luekomalacia) which is loss or damage of white matter in the brain. But our Neurologist said it would be fair and truthful to classify it as CP, which is easier for people to understand. But I will say not all children born with PVL have CP and not all children with CP have PVL. At least that is my understanding so far. 

ANYWAYS... If I were to gauge Lottie's CP, by the definitions they use on the website, I would say Charlotte is between moderate and severe. That being said I want to be clear that the brain is an amazing organ that had plasticity and can repair itself. So Charlotte may present as severe now but it two years, she may appear mild, or they could take away the CP diagnosis completely. 

The next is topographical classification. Which means how much of the body is effected. And if the body is weakened (paresis) or paralized (plegic.) Sorry, if I am beginning to sound like a textbook, I'm just trying to help everyone understand what we are facing.

Again we have not been told the kind of CP, and on this classification I am not willing to speculate because I don't quite understand where she would fall. Her whole body is effected but she has had no breathing or swallowing difficulties.  

Time for a picture to break up the information. She has learned to smile at the camera! Take that brain injury! 

Ok, back to the serious stuff...

The third classification is motor function and whether the child is spastic or non-spastic. Spastic CP being the most common form. Charlotte at this time is non-spastic. And we have been told many many times by doctors and therapist that there is nothing about her muscles or body that is spastic.

The last classification is muscle tone. And if you have been following our journey at all you know Charlotte is low tone (hypotonic) also the more rare presentation in Cerebal Palsy. Especially CP caused by PVL. According to research we have done on PVL, Charlotte should be spastic and high tone. But we can never expect anything to be status qua with Lottie. 

The 100% completely original Lottie

70-80 percent of all CP cases are spastic. And from what we can tell Charlotte's CP is ataxic which does not include involuntary movements and only makes up 5 percent of the CP community. 

So if you are still wondering why we are just now coming to an answer on what in the world has been causing Charlotte's symptoms: it makes sense that since she presents much more like a child with a muscle disease and doesn't present like 95 percent of people with brain injuries, that is the reason we have been following many different paths. 

I suppose I could write an apology letter to all the muscle diseases I have blamed. But I won't because they still suck and there are still way to many children and adults out there living with them. Please research MD and SMA. They need awareness and of course money for finding cures.

I could also write a hate letter to brain injury and PVL but I will refrain because I know the brain is doing its best to repair itself. And we still don't know if PVL is the only cause for concern. We are still going through with the exome study and there may be additional diagnoses. I know, groan! 

I will say this, DO NOT feel sorry for us. I will proudly claim special needs mom because that means I get to be Charlotte's mom. And she is incredible! If we think about how hard an average child's brain works just to develop, imagine Lottie's brain doing like, quadruple duty. She is forming pathways that didn't exist and we will be stimulating her brain as much as we can. More intense therapy... Charlotte would groan if she could read this. But she will rock it, she always does. Don't worry though, as much as it would be funny, I won't get a bumper sticker that says "my child's brain works harder than your child's brain." (Insert ackward laugh) 

So KMBC and Kansas City Star, thank you! Thank you not only for bringing attention to a need this city has for parks for all abilities. (By the way, playing outside with friends is one of the best ways young children learn, look it up it's true!) But Thank You for helping me own a new part of our identity and pushing me towards the finish line of acceptance. 

I will continue to have bad days, I know this, I know the stigma of brain damage and physical disabilities is real. I know that those pity smiles I got at Kohls the other day while pushing Lottie around in her wheelchair will still bother me. I also know that the lady that stopped to tell Charlotte that the sparkly wheels on her chair were awesome and that Charlotte was adorable will make me beam with pride! 

So here I am Katie Ireland: Mother to a Child with Special Needs! 

And she is pretty darn awesome! 

An Incredible Morning!

I had the incredible honor of representing the Variety KC parents today in publically thanking the Kansas City Royal's Charities and Glass Family for their incredible gift to Variety and our city. They are building 2 inclusive playgrounds and have an incredible gift of 60,000 dollars!! 

This is the speech I wrote and presented today and some pictures from the event.

Hi, my name is Katie Ireland and I am proudly a Variety Mom. We crossed paths with Variety for the first time in September when we were chosen to recieve a go baby go car. And we are so glad we did! We have found that not only did Charlotte get an awesome new set of wheels but we have found a second family in Variety. Their passion for inclusion is so heart warming and encouraging. And they will go above and beyond to make our children feel special. In my opinion they are leading the way for the rest of Kansas City and surrounding areas. We can not sing their praises enough! 

I want to introduce you to one Variety kid, this is my daughter Charlotte, she was born with severe low muscle tone and developmental delays. We have been on the hunt for a diagnosis for most of her life. In fact this little rockstar had her second MRI just this Tuesday. After many tests, we found outjust two days ago that Charlotte has a condition called PVL and in her case it effects the part of her brain that controls motor function. She will progress but very slowly. Even with out her current diagnosis she has seen more doctors and specialists in her two years than I have in my 30. She is incredible- but she is not alone. One out of 4 families has a member with special needs. 

It is an honor to be here and get to thank The Kansas City Royal 's Chairties, The Glass family and Royals Alumni for such an incredible gift. My husband and I grew up in Kansas City and are die hard Royal's fans! Our children of course are fans too. In fact Charlotte's little brother was born on the first day on the World Series last year and this year we celebrated his 1st birthday during this years series with an all Royal's themed birthday party. We are BIG fans!!  

And to think that Royal's Charities cares for  ALL of our community as much as we care for them is a Blessing!

When Deb shared with me that the Royal's  CHARITIES would be giving a very generous gift to help build inclusive playgrounds for our children, I knew I had to be involved! You see, I have been working with kids for over 10 years and have been to many parks in the Kansas City area, but I did not fully understand the importance of  creating parks for ALL kids until we had our Charlotte. When Charlotte turned 1, My husband and I were so excited to take her to a public park for the first time. When we arrived and tried out some of the equipment, we quickly realized that nothing at the park, including their bucket swings were appropriate for our extremely floppy little girl. It was incredibly disheartening. And we didn't even try another park for at least 6 months. And sadly the second park was the same as the first.   Playgrounds and being included should be a right of passage for every child-to lay, laugh, make friends, explore. So Why was ours excluded?

 This broke our heart. Was my child not going to get to play at parks with her little brother and meet new friends?  

So you see, this is not just about a park to us, this is about living as normal a life as possible and giving our children the same joys that other children experience. The joy of flying to the clouds in a swing or playing tag with their friends on feet or in wheels. Or maybe being able to hit a ball and run or roll the bases. So on behalf of all the Variety parents and special needs parents in Kansas City we say Thank You! Thank you for the joy you bring to our city as a whole and Thank You for the joy you are bringing to and including ALL our Children.

You are setting an example  to all communities to include and Love all our children.  Royals and Royals Charities thank you for believing in Variety Kc and our mission to help Every Kid, Be Active, Be Social and Belong...Thank you for making a difference in all of our lives. 

    

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. 

Perfection

The Kansas City Royals are in the World Series for the second year in a row! And October has become a very fun month in our city! 

Just in case you were wondering or are visiting, one of the touristy things Kansas City is known for, perhaps the only touristy thing other than BBQ, are our fountains. We have lots of them. Rumor has it, we have the most in one city inside of the United States. I think the most famous of our fountains is the JC Nichols Fountain. It sits right on the corner of our ritzy plaza district. (Basically restaurants and shopping and really pretty Christmas lights.) This is what the fountain looks like most of the year: 

But sometimes something magical happens to this fountain and the color changes to celebrate or honor something big that is going on. Like pink for breast cancer awareness and yellow for childhood cancer month. The last few weeks this majestic fountain has been a beautiful Royal Blue, you guessed it, to cheer on our winning baseball team. If you know me well, you know that I am not that passionate about sports. Most bore me and some infuriate me because of the violence and incidence of head injuries. I will not go there, as I do not want to lose most of my readers. 😀 

But there is one sport that is special to me and gives me serious warm fuzzy feelings. And that sport is Baseball. Admittedly, I often get bored during this sport also but for the most part, there is something classic and all- American about it. 

It may be because I grew up hearing stories of my great great grandfather Jay Towne playing in the 1905 World Series for the Chicago White Sox. Maybe it was my dad's stories of baseball cards and Pittsburgh Pirate's games. Maybe it was the movie The Sandlot or Angels in the Outfield or A League of their Own. 

More than likely it was the summer tradition my dad and I had of going to see at least one Royals game at Kauffman Stadium. It didn't matter that the Royals were terrible every game we went to. I really don't think I saw them win a game until a couple years ago. It was about the bonding time and the hot dogs and the cotton candy and "Lima"nade and bobble heads and stupid expensive t-shirts and foam fingers. It was the silliness and the pride I saw in my dad as he tried to explain the game to me, which I'm sure eventually turned to annoyance but he didn't show it. Then there was the one time the drunk guys in front of us turned around, after my dad cheered for free doughnuts we would all recieve for having 12 hits, and patted my dads stomach and said "looks like you should lay off the doughnuts and go for a fruit basket!" Maybe that was just funny to me. 

As I got older, mom and Neal started joining us at games. Thank you to my moms former job which always offered amazing tickets. I do miss that perk, Mom.  And many many more memories were made. In much better seats too. 

And then last season. Our team was suddenly doing really well. Maybe that had been on the way up for awhile but I had somewhat lost interest. I was 9 months pregnant and Neal told me we had a shot at the playoffs. I think my reaction was "excuse me what?" I don't know if I knew that baseball was played into October. Certainly not Royal's baseball. But I was wrong because the unthinkable happened. If you're from Kansas City you know this part. If not a quick recap. We won a crazy wild card game, Neal and I feel asleep in the 7th. I was super pregnant and the Royals were really losing . Then around midnight I woke up with heartburn and checked my Facebook and screamed with delight! We had come back and won!! Now Neal and I try to stay awake for most important games. Then a few sweeps through the playoffs and then a heartbreaking loss in the 7th game of the World Series. Darn Bumgarner! Oh yea, somewhere in there, on the first day of the series to be exact, I went through some seriously awful labor and had a baby. Our baseball baby Max! 

Fast forward a year and here we are again. Back in the series. A day after a really long exciting game one victory. But let's go back to the fountain. Did I mention that I drive by it 8 times a week on my way to and from Charlotte's preschool? Last week, I took Max for some fountain pictures. 

And today, I decided I was going to take Charlotte after school. I picked her up and got in the car and debated stopping because I knew I would have to parallel park and walk a little while with a cranky outdoor hating baby. I told myself that if there was an easy parking spot we would do it. And guess what? There was. A perfect spot and not that far from the fountain. I put Charlotte in the stroller and the wind was blowing, something she loves and the sun, something she hates, was covered by the clouds. So she smiled the whole walk. When we approached the fountain a huge laugh erupted out of her. Pure joy! Max had a similar reaction but not as exuberant. I took her out of her stroller and set her next to the fountain. She was giggling and watching the blue water shoot up from the ground. I got on my knees and tried to get her attention on me. It took several attempts but at just the right moment she turned towards me grabbed her feet and gave me the best smile. And I caught it on my camera!!! Out of my mouth came the word "Perfect." I realized as I was saying it that about 10 people in their early 20's were passing by and watching this whole thing happen and about half of them said perfect at the exact same time as me. We all giggled, my heart swelled with pride and they moved on. The picture was perfect. Her smile was perfect, the fountain looked beautiful and she was looking directly at me. I immediately sent it to Neal. He agreed that the picture was amazing. Sheer luck, because I am no photographer. 

The whole way home I kept thinking about that word. Perfect. Yes, those strangers agreed that my little girl in her Royal's shirt in front of a blue fountain took a perfect picture. To them all they knew of Charlotte was that picture and the only word they used to describe it was perfect. Wow. They didn't know we had just left a therapeutic preschool. They didn't know that Charlotte had choked on a piece of Chex a few hours prior. They don't know we have a MRI scheduled for December to check her brain for any imperfections. They just saw a cute smile in a front of a beautiful fountain. And at that moment so did I. And that's the thing she is perfect, I know this because I know that the way those strangers saw her in those few split seconds is how God sees her all the time. He said she is wonderfully made. She is Charlotte and she is her kind of perfect, her kind of perfect for today and tomorrow if something changes she will be tomorrow's kind of perfect. And I will choose everyday to find that perfection in both of my children no matter the situation. 

The Royals haven't always played well, actually they had some really awful seasons where none of their fans could really claim perfection. But they were still fans. There was joy and perfection in those 1995 losing games to a 10 year old Katie with her Daddy. There is joy and perfection in the 2015 winning World Series games to 30 year old Katie (who still calls her Daddy after every playoff or World Series game. I guess it's all about perspective. My perspective may not always be positive and I know I will still grieve and hurt. I'm talkin about Charlotte here but this may also apply to the Royals in a few years. But I am going to make a promise to try to find a little bit of perfection in my perspective. 

My Max Turns One

I

In a little over an hour my son will be turning one. My mind can not fully understand how this happened so quickly. I know, I generally use this blog to talk about Charlotte and special needs parenting but today it's all about Max and this is my letter to my second born the prince in or home. The surprising blessing. 

Dear Max, 

It is hard for me to believe it has been a whole year that we have spent with you in our arms, yet I also have a hard time remembering  life with out you. You and your sister are light in our worlds you both love big and bring immense joy. You my Max, are a nice mix of strong will from mommy and stubborn will from Daddy. You chose the day you would be born, even though we were to be induced the day before. You made your appearance only slightly late but late enough to claim your own day. You seem to always make your own choices and ours as well. You are a very picky eater and only like 1 TV show and if you are mad or sad, someone should have that remote in their hand putting at the screen. 

Your birth day, just happened to be the first day The Kansas City Royals had played a game in the World Series since 1985 (the year I was born.). We called you our lucky baseball baby. Even though they didn't win in the 7th game of that series, we are very close to making it to the series again and you continue to carry the luck of the Irish.

 

You and your sister are so close in age that it has been hard for me to split my time evenly and I often thought one of you was getting way less of me when you were a young baby. You quickly learned to remedy that by demanding my attention. (This is trait that most definitely comes from me.) Your sister is patient and we have found ways to work it all out. 

Watching the bond you have with your big sister is probably the biggest blessing you have brought into our family. At first, you did not tolerate her well at all. I don't blame you, she was so enamored  by you that she would squeeze and pinch and sometimes bite. But as you became more mobile, she did too and we started to notice you entertaining each other. And it's really adorable and fun to see! 

Max, I want for you to be your own strong, confident, independent Man someday but I pray that you and your sister will always have a special bond. You came to us so close together, and I believe God knew exactly what he was doing. 

In other news you have started babbling a lot and Dada was your first word. Which is ok with me, your dada is pretty cool. Mama followed after and now you are working on forming more. We think we have heard you say Nana and Tootles. Which brings me to your current obsession, Mickey Mouse Clubhouse. Hours and hours of this show. I know already that you are like your Aunt Meggie and will find ways to binge watch TV as soon as you can. For now, I will still try to persuade you with blocks and cars and books and ok, an occasional Hot Dog Dance. You love to dance, you and Charlotte both! You bounce to music and try to sing along. 

These days you are walking, slowly, very unsteady but walking. I am so proud of you. All of your milestones are big but even more awe inspiring to your Daddy and I. You can thank your incredible  sissy for that. She has taught us some amazing lessons about life and I can't wait for her to teach you too. And I know you will also teach and love and protect her In return. 

I want to quickly list my favorite 5 Maxisms. 

1. You give the best kisses open mouth followed by the muah sound. Please continue to kiss me. Even just on the cheek for as long as you can! 

2. You are a grunter and you often grunts at people and things that annoy you. (Kinda embarrassing at story time)

3. You already have a best friend Sam, and the only time You will eat solid foods  and climb stairs is when Sam is around. What's up with that?

4. You get so excited when the people you love enter a room. The ear to ear grin is pure magic for us. I wish I could bottle it and sell it as an antidepressant. 😉

5. You are still a cuddle bug and like to lay up against me when you feel tired or overwhelmed. You are a wild man and on the move almost all day but those few cuddle moments mmmm.

Max, I can't wait to see what this year brings you and us. I am sure it will be a lot of adventure and a lot of fresh vocabulary. I see running and falling and a lot of mommy and daddy chasing after you. I hope this year, you learn to help push Charlotte's wheelchair with us, and that you can help her learn some of the new words you will be able to say. I hope you will be able to slow down and appreciate her. She is your biggest fan. I hope you have some much fun being one. I know I will be having fun being your mommy! 

I never thought I would be a boy mom, but Max you have shown me how incredible the bond is between a mommy and her son. I will be here for you all the days of my life. And I will always be a safe place to land. You are made in God's image and he has plans to do immeasurably more than I could even ask or imagine. My heart over flows with love for you. 

            Love, 

                    Mama❤️