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

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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❤️

Micheal Scott and the Gift of being Mindful.

There was something so comforting yet incredibly uncomfortable (if that's possible) about NBC's The Office's lead character Micheal Scott. His character often brought humor to sometimes serious situations. Only Steve Carell (and Ricky Girvais, if you prefer the original British version) could say such off the wall cringe worthy quotes and still everyone adored and loved his character. And so before I delve into a post about grief and things that are not watch party worthy. I give you my favorite Micheal Scott quote: 

Now on to what's going on in our real world. I do not live in Scranton, I do not work at a paper company, my bosses are small children not a man who burned his foot on a George Foreman. Yes, Neal is my Jim in some ways and on some days he is more of a Dwight. Man I miss that show. Anyway... My life is not fictional, it is not full of 30 minute segments that mostly resolve themselves in that short time frame. 

One thing my life does have in common with television is that it is full of cliff hangers. Lots and lots of cliff hangers. Imagine every doctors appointment being like a season finale. They drop you some hints and then give you a time frame you have to wait to find out if the doctor was right or wrong. But in my life lately, every season premiere comes back with no resolution only more cliff hangers, nothing to hold on to, nothing ever changes, nothing new is revealed. Most people would turn the channel. This is my existence. This is living in the unknown. And sometimes it's peaceful and fine, and we set it aside and we don't worry about what tomorrow will bring. And we listen to people around us that say "it will be ok" or "don't count your chickens before they are hatched" and "hand it over to God." And these are all very true and very helpful. But here's some more truth... 

Some days grief overwhelms you. It's hard for me to even use that word because I we often associate it with death. And I do not in any way want to downplay the pain that many parents feel, the terrible gut wrenching life changing grief that they feel because their children have left this earth before the had the chance to grow old. I saw grief in my Mamaw's eyes when she was with us on Earth, because she lost a son when he was only 23 in a car accident. I wasn't born yet when it happened but that grief lingered. I am told she was never quite the same after the loss. I have seen it in the eyes of friends that have lost babies or have very sick babies. I have been to a funeral for a baby and felt the ache for my friend, the mother, who couldn't even bare to get out of the car. That is a grief I hope to never completely understand. It is a different grief. And I do feel like when talking about grief and parenting, it is important to stop and acknowledge that. 

That being said all parents feel grief in some form at some point. I'm a newbie parent but if you look around long enough you will see that. They say that having a child is like wearing your heart outside of your body, exposed to all the elements. How could that not produce grief at some point? There are stages of grief, I'm sure many of you know them if not, it's a very easy Google find. Right now, I am smack dab in the midst of one of the stages. I have been through denial ever so briefly. I'm constantly fighting the anger phase but that's not where I am right now. I have been to acceptance and back multiple times. I've bargained with God, I begged him to make it anything but SMA, I told him I could handle anything else that would leave her here on this earth with me for a long time. It's not SMA. Although I don't think it was my bargaining that made that so. I still pray for miracles but try to remind myself that miracles from God are given freely. Right now though, it's depression. Ugly, painful, weepy, feel sorry for myself, don't want to get out of bed, think I am the worst mom ever, will this ever end depression. I am NOT writing this for sympathy. Please understand, I know I am loved and I know it will all be ok. I am not asking for advice on depression and please please please do not suggest any essential oils, especially of the coconut persuasion. I have doctors, therapists and plenty of crunchy oil loving friends. I am writing this for honesty. I have chosen to be real here, exactly where I am in this journey, the good the bad and the ugly. The super mom mask is off, as if it was ever on, and I am ready to embrace the pain. 

I have spent hours crying and researching and crying and taking Charlotte to therapy and crying and playing with Max and crying and taking care of sick babies and crying and filling out forms and crying and preparing for appointments and crying  and that's just this week. So yesterday, I had finally had enough. I called my therapist (yes, I have one and a psychiatrist too!) and asked if I could see her ASAP. She got me in that afternoon and after a lot more crying in her office, she looked at me and told me that yes, my life is really hard and yes it will continue to be really hard and the anxiety will always be there. She said its ok if I don't spend every minute being present with the kids and figuring out Charlotte's future. She assured me that more than likely even with hours of Mickey Mouse, my kids were going to turn out fine. She even used a little stress relief oil on me... Sigh... And then she told me about mindfulness. And being in the moment. At first it sounded ridiculous. Like stopping to think about what washing my hands really felt like. The warm water, the smell of the soap, the feeling of the soft towel. And she suggested acknowledging the way my body feels in a chair. How comfortable I was, what the fabric felt like and so on. She told me to be realistic and just try to do this a few times a day. For my crazy, always-going mind, I couldn't imagine how this would help my depression and anxiety. But I already take medicine and I can't change what is going on around me. And I really don't love the smell of stress away essential oil. Charlotte and Max would still have colds and the neurology appointment on Friday was not going away. So what the heck, I told her I would give it a try. And so... 

Today, has been a new day. I am still swimming through some depression but I have had a wonderful day at home with my sick babies. I lit my new favorite fall candle and made myself appreciate the smell, even while listening to the screams of a 1 year old with a terrible diaper rash. I laid on the floor while listening to the movie Frozen and just enjoyed laying next to my daughter and listening to a movie. It didn't matter to me that she was not all that engaged or that she wasn't up doing therapy for that moment, I just enjoyed Charlotte. I held Max and fed him a bottle without picking up a phone and for the first time really appreciated the way he rubbed my thumb while feeding him. 

Don't get me wrong there was still a lot of screaming, many poopy diapers, and big messes all around me today but just being mindful of the good stuff made a big difference. And the bonus of it all is this: I found a new way to connect with my kids on a deeper level. A more personal present freeing level. 

So guess what Micheal Scott? I guess there is good grief after all because it led me to finding a way to peace even in the midst of our many cliff hangers. 

He knows

I have always struggled with trust. I don't know where it started but it has always been there. I have always been a worrier, that part I think is genetic. If you know my 98 year old grandpa or my dad, you would whole heartedly agree. It is very hard for me to feel at peace with what the future holds. I hate surprises and I'm am not the least bit patient. I research everything, Google is a vital part of my village. I like plans and I like consistency. When asked what super power I would want to have I have often answered, the ability to see into the future. 

This is all kind of funny when you consider the path my life has taken. Being a mom to a typical child takes flexibility, patience, and trust. Being a parent to a special needs child and you can pretty much multiply that by ten or more. But it my case, I have a child with special needs and no diagnosis. She is a mystery. A daily surprise. Not only am I not privy to what her future holds or what is currently going on in her body, but neither are the experts! And this boggles my mind! 

If you think this has helped my trust issues, you would be way off. Well partially off. See, I used to think that people got sick or had disabilities and went to the doctor and the doctors could run test and figure out what ailed them. I mean, maybe not with just one test but after a few, right? I had no idea there was a whole world out there of undiagnosed people living with disabilities. And I certainly did not expect to be a part of that world. But here we are. 2 years in. 1 MRI, 1 EMG, numerous genetic testing, a muscle biopsy, a muscle ultrasound, multiple doctor observations, therapy therapy and more therapy, and NO ONE can tell us what this is. There have been abnormal tests but not enough information to give a full answer so basically, they don't know.

And some days, like today, I feel like we may be way off the mark and heading in the completely wrong direction. And this is not just a hunch but a very well thought out researched and talked about real possibility that some of the doctors are off the mark, and we need to reopen something that has been glazed over. Today I am glad I have trust issues with doctors, today I am glad I can listen to a friend that verifies what I have been thinking. I am my child's advocate and I will leave NO stone unturned. And I will not settle for a "clinical diagnosis" based on "observations." 

So Monday, I will make a phone call to a doctor that will want to do yet another test that we have done before but that we believe is neccesary again. And this may come back normal and then our hunch would be wrong. But this is what I have to do. This is how I cope with the unknown. I keep moving forward, finding the best therapies for Charlotte. Hunting down the  best doctors and who can give us the most information so that we can insure she can have the best life possible. That we are not short changing her at all. 

I am learning patience. I have learned techniques to calm myself, and because I am completely candid, I will tell you that I take medicine for my anxiety and have no shame about it. I still hate surprises and Google remains a close companion, I have learned when to stop reading though and which websites to avoid. I will always feel a bit of mistrust in doctors and people that want to stamp my daughter with some unproven guess. Doctors are smart people but my girl is not easily figured out. Which on a side note is kind of fun to me because she is already unknowingly  challenging authority which I was known to do myself and I think makes for a strong woman.  

So here I sit. A 30 year old with over 10 years of childcare experience. None of which prepared me for this. I thought I was prepared for everything. I am still a person that doesn't like to be surprised and hates the unknown. I can't rely on doctors. And there is a high probability there is no science yet to rely on either. And I have a beautiful little girl with big blue eyes and the best smile you have ever seen. That loves people and tries so hard to do what her body should be able to do. So I continue to keep my head up. Move forward. And trust in the only being that is infallable, my God. He knows. Our hunt will continue. But I will rest in the fact that He knows.