Communication.

I want to share a glimpse into my heart with you all tonight. It might be raw and some of it will make no sense to you, but to others it will make all the sense.

A look inside my mind’s diary. I do not keep a journal or a diary, I always thought secrets or pain written down and hidden away did not make them real and give them the time and strength they deserve. As I started blogging, I realized I was doing the same thing. I was writing my pain down so that it would be “released” from me. And temporarily it was so. But I had to do much more work on this pain, much more introspection and sometimes I need to voice more to the world and sometimes less. So I stopped blogging, I didn’t feel like I needed the pain release and I didn’t feel like I was offering much in the form of information. But tonight after a short facebook conversation with a mom that get’s it. I felt I need to share with you all the hurt that still eats away at my soul. Every single day. The what-if I can NOT let go of. So let’s go back into some key times in our journey with Lottie and I will try to show you the gritty pain and promising hope that I am simultaneous walking through. 

Spring 2013- I laid there staring at the screen above me, willing the lady with the gooey wand to tell me it was a girl! I so badly wanted a girl! I had dreams, of dress up and barbies and theater and Disney and teaching her that women are fierce and not inferior. I longed for her to have a relationship with Neal that I have with my dad. I dreamed about the hours we would spend on the phone as adults talking about her life. I even pictured her in frilly dresses that twirled at 5, and a hopefully modest prom dress at 16 and I know I imagined her walking down that aisle. And here is the thing that I held most deeply to my heart, I longed to get to know this little girl. I longed/ long for her to talk my ear off and ask all of the why questions my mind can contain. I longed for her first true girl friendships. I felt all of this while laying there wiping the gook off my belly. 

July 2013- A beautiful baby girl comes into our world. 3 weeks early but seemingly 100 percent healthy. I dressed her in an adorable pink outfit to go home and Neal and I joked about the little girl this baby was going to turn into. She was already crying a lot! A lot! She we often joked that this child had a lot to say and would say it all very soon. 

November 2013- There is something wrong with your beautiful baby girl, but we think it is all muscle so it shouldn’t affect her speech or intelligence, we think, but we will have to wait and see. I spend hours on facebook finding moms whose kids had physical delays but not cognitive or speech delays. I was convinced this was us too. 

Fast forward a while…. No words, no vowel sounds, no real mumbling. Let’s get speech involved

2014-2016 - What would seem like minor strides but MAJOR ones to us. Charlotte said Mama, and Dada, then Elmo, then Nana, then started doing some babbling. We were so optimistic that she would just soar. Days creeped into months, into years. Our amazing speech therapist suggested picture boards and our favorite simple signs. Soon she was signing , more, all done, mama, dada, food, drink, and music. Then we started hearing “more” and “all done” Little steps but a Mama’s heart that was fragile as glass. One playdate with two other 3 year old girls, and a bit of the glass shattered. A piece fell to the floor as my tears quickly covered it. I had to let go of the need and hope, I had to let go of the yearning to talk to my 3 year old the way other Mommy’s talk to theirs. I spend hours on the floor almost jedi-mind powering Lottie to speak. To tell me what she needs, what she likes, what she is thinking. It aches to have this little being you love so dearly so close to you but yet lies a great wall of communication. 

I was a born communicator, I like to talk and talk and talk and listen and listen and listen to people’s stories, I understand people by what they tell me and by the words that they use. I get close relationships  this way. But this is not on my timing with Charlotte. I slowly let that fragile heart break because when all the unnecessaries are completely gone, I know my heart will be replaced with a stronger more understanding less whiny me. And maybe she will talk to me before that day, or maybe words the way we use them will never be for her. Please know I cry and hesitate as I write that. Because my heart LONGS for her words. Longs to know my daughter on that level. Today we were able to use a switch connected to a box connected to a lamp to get her to make a simple decision. She did. And I felt joy but I felt another piece of that fragile heart go again, knowing that this may be her way of communicating. That for years and years, we may be working with switches and ipads and artificial voices. Speach. It is one of God’s greatest gifts to humans. But those stripped of that ability are not stripped of God’s gift, the rest of us just have to let our walls down and see their gift. The light, the box, the switch.

McCoy Park Independence, MO

This will be the first of my park reviews for this summer. The reason I am doing this is so that other parents with special needs Children can easily find the best parks in the Kansas City Area. 

I am writing from the prospective of a mom with an almost 3 year old that is nonverbal and not mobile (except crawling and rolling.) And a typical 20 month old son who never stops moving. 

We ventured almost 30 miles to check out a park near my friend Sara. Really 30 mile is not odd in Kansas City, I joke that everywhere I go is 30 minutes in some direction. And if I am going some place closer I'm always early, because I assume all drives are 30 minutes. This drive was about 45, but I think it was worth it. 

When we got there I discovered that the handicapped parking is actually farther away from the splash pool and the playground then the regular, yet very limited parking in the circle. We were lucky enough to get a spot in the circle and discovered that getting pretty much anywhere at the park was accessible, meaning ramps not just stairs. 

We started at the splash pools. There were three. They were nicely padded and very toddler and special needs friendly. I even wheeled Charlotte through at one point in an umbrella stroller. There was also nice little places for Charlotte to sit and splash in little fountains. While Max and our friend Stella (almost 4 year old able bodied) ran around. 

The only downside to the splash pad/pool area was that it was so open and very hard to keep at 1 year old contained while entertaining a 3 year old with special needs. But with one adult to each child it would have been great. My friend Sara helped a lot but she had her 4 year old to chase too. After the splash pad we headed to the "inclusive playground." 

The playground was awesome! The swings were just right and the play equipment was wheelchair accessible. My only complaint was that it was only partially gated in and there was a wide open area at the bottom of the ramp that lead to the parking lot. I have heard rumors that the whole thing will soon become even more inclusive and fenced all the way in!! Our favorite charity Variety is involved, so I am sure it will be great.  More on that another day. 

Also at McCoy Park, there is an inclusive baseball field and another playground down the hill, the second playground did not look inclusive. 

They also had shelters with picnic table and during the summer there is an organization doing free lunch for kids under 18 in an air conditioned gazebo. We did not check this out, but I thought the idea was fabulous! Just like every kid deserves a place to play, every kid also deserves a full lunch. 

I know there are major changes coming to McCoy park and I am excited to see what is to come!!

So... On a rating scale 1-5 

Proximity to my home: 2 - a long drive but mostly highway so worth it occasionally

Accessibility: 4.5 it was easy to navigate with a stroller and it looked like it would be the same with a walker or wheelchair. The only reason it was not a 5 is because of the weird placement of handicap parking spaces

Inclusivity: a solid 4- there was a lot to do for all kids, the swings and play equipment was all very appropriate. It may have been a bit overwhelming for our sensory friends, and the wide open spaces makes it really hard for a parent with a runner. 

Fun: 3.5 - it would have gotten a higher score if mommy's anxiety wasn't through the roof chasing Max. Also Charlotte had a hard time in areas that were not shaded. But again with an extra set of hands it could easily be a 5! 

Age range: Baby- Adults (I saw a women that looked to be in her 80s wheeling around with some kids) Probably the most fun for 4-10 year olds. But the splash pool was great for toddlers! 

Will we go again? Yes!!

I wish I would have taken more picture but I had to keep my eyes on my kids. ;)

Singing and swinging! I love this!!

Eating lunch in the playground! 

The Easter Egg Ache.

As I browsed Facebook tonight I saw many of my friend's children hunting for Easter Eggs. (Disclaimer: The pictures are adorable and I really love seeing them. I really do! And dear friends I don't want to take anything from you and those beautiful moments. But I'm going to be real about my feelings. But please know, I love your kids and I love the pictures.)

As I got to the third or forth picture something inside me ached. You see, this year Lottie is almost three and this is the first year her peers, those her exact age, are in those pictures...I'm hurting, mostly for myself. She doesn't know she is missing out. She is gleefully oblivious to the lack of food coloring on her hands or the absence of candy filled eggs in her basket.

I hurt for me. I hurt for my friends going through the same thing with their toddlers , whether it be physical limitations or sensory issues or lack of resources. I hurt for the moms who have lost children. I suspect those moms feel the absence during holidays so strongly they want to sleep it away or pretend it is just any other day. 

I hurt because Lottie will never be a walking, talking, egg hunting 2 year old. She may be at 3 or 4 or 10... But not 2. 

We will still celebrate Easter, we will dress her and her brother up and have them take pictures with their baskets. We will go to church and remember that Jesus was resurrected and that he heals the broken hearted mommies. And we are assured that either on Earth or probably in many many years when she gets to Heaven, Lottie's body will be limitless and free of all disability. 

I think of Jesus and the story of the little children coming to sit on his lap, I wonder if there were any children in that group with disabilities and if there was I would bet Jesus would have lifted them up and held them tight. I love it when friends hold Lottie tight, it makes me feel normal and it is a reflection of Jesus, whether they know it or not.

I know, deep in my heart, that Easter is not about egg hunts and bunnies. And that life has lots of purpose with or without being able to run or watch your 2 year old run. I know that I may miss this memory making experience but that I get to experience different things with Charlotte that hold much more value in the long run. I am hurting, I am owning that, I am giving my friends permission to hurt this weekend. But I know that next week will come. And as for Easter, my eyes are fixed on Jesus because his resurrection and promise of Heaven is something we all can share! And THAT is another incredible lesson from our Lottie.

 

Dear Charlotte

Dear Charlotte,

Mommy has been thinking about all the things I want to say to you for a few weeks now. All the things I want you to make sure you hear when you are older and can comprehend all I have to say. I know I am forgetful and I mostly live in the now and I know when you are 10 and amazing me with all of your cool skills, I won't remember all the words and feelings I have now. 

You are so loved! You are our first born and when you grew in my womb, you gave me purpose like nothing has before. A God given purpose and so I know it is of great importance. People say you look like a replica of me and I beam with pride. Because I see you as perfect! The thing is you are a much greater version of me, you radiate such joy and love. You have from day one. We were so amazed by you, and the amount of love we felt could not possibly be put in words. 

Lottie, I want you to know that even though at 4 months the doctors said you were developing differently then the average baby, it did not change you or our love for you. Yes, Daddy and I got caught up in what ifs and a search for a diagnosis and we had some very scary weeks, but one thing always remained, you are our girl and you are our purpose. 

So, we got a diagnosis, a label for some of the more challenging things you will face. Cerebral Palsy. It means nothing when describing you. It's a couple words that simply mean that while you were perfectly forming in my womb, your brain was injured and it affects your motor planning. As you will know by the time you read this, certain things are more difficult for you. Right now it's standing and talking and eating without your fingers in your mouth. (Which by the way is pretty cute.) In the past it was holding your head up or sitting or crawling but you mastered them all as I expect you will your current goals and what ever challenges lie ahead of you. And I know one thing more, you will do it with joy and love beaming out of every bit of you.

There is something really special about the way you interact with people. Grown ups and kids alike. You put people at ease and you let everyone know you love them. It does not surprise me one bit that you use the little muscle tone you have to give the best bear hugs!! I watch you with your peers and although you can't talk to them, they are drawn to you. Oh my pretty girl, it is so easy to be drawn to you. 

You already know how to please your toddler boyfriends by laughing at their toddler shenanigans. Actually this works with your brother too! 

I know these things are what makes you, you. I know this because I see it everyday and I know it because your MRI shows that the part of the brain that controls personality is completely intact. So Lottie Lou Mae, you are genuinely the precious, easygoing, people pleasing, sometimes stubborn toddler that you present to us. And I am so lucky to get to call you mine! 

When you speak my name (mama) I know that it takes a lot of work and I feel incredibly honored. When you reach up for me, I know it is a very complicated process and I feel very proud. When you sign "more" or "all done" I know that these are intricate fine motor movements that require your brain and your hands to work together properly when your brain isn't wires for that. In those moments I feel awe. 

You are incredible my sweet girl and I can not wait to watch you grow and flourish and make me proud and honored and awe stricken everyday. Always know that Mommy loves YOU! And that you and your brother will always be my greatest purpose.

Smudgy Windows

Some days I wake up, crawl out of bed ready to face the world. My specific world of special needs parenting to a 2 year old and average parenting of a 1 year old. And I feel powerful! I am "killin' it." All of Charlottes appointments are scheduled and her breakfast is full of all the important food groups. And if this  really is a killin it day, Max is dressed and fed and not watching TV but engaging in mommy/Lottie time. 

I feel like the world is our oyster and we are going to conquer it in tiny little Charlotte steps. And I get in the car and I take her to therapy and I beam as I watch her interact with her peers and try new things in PT. We leave school and I am ready to feed her a healthy lunch put her down for a fantastic nap and spend some quality time with Max. These are the days where the nap goes well and she wakes up ready to roll, which is good because we probably have another therapist coming over or we are out the door for another appointment. 

Neal comes home, makes a great dinner, the kids are happy and we enjoy our kids for who they are at that exact moment. We enjoy Charlotte's contagious laughter and Max's speeches to anyone who will listen (understanding is optional, and frankly impossible.) We put our sweet babies to bed, sing, pray, cuddle and lay them down to quickly fall asleep. I lie in my bed and I think "wow, what a great day! This special needs thing is easy and I am super mom and Lottie can take her sweet time, she is so perfect."

Then.......

I do it, I flip open Facebook and I am assaulted by adorable 2 year olds that are playing with toy vacuums and riding their new tricycles. I see videos of Charlotte's peers singing Christmas carols and wishing me a happy new year. And the mood drops

                           drops

                               drops........

I am in a different place now. No more unicorns and butterflies and rain drops on roses. I'm in a dark room with smudgy windows and the feeling of doubt in myself, doubt in Lottie's brain, even doubt in my God. It is like a wall closing in on me. Suddenly everything seems different. 

Did we really have a good day? I woke up 15 minutes late, 15 minutes of time I could have had to play with Charlotte and Max and assure them that I love them. The drive to school wasn't enjoyable because  Max was screaming and I forgot Lottie's backpack. 

And now I'm remembering how I was trying to talk to my friend and Max continued his tantrum inside the school. And at the end of the day, pdid her teacher mention that she needed a swallow study? 

Her nap was good but really her lunch could have been a bit healthier and I probably should have chosen water over juice. The therapist was here, working hard with Lottie, but was I present? Was I retaining this information? I'm pretty sure I wasn't and that when I do this activity with Lottie later I will totally mess it up and probably make it harder for Lottie to learn. 

Neal came home, he cooked dinner, he always cooks dinner. He always makes sure the kids have full tummies and all the really important healthy groups. Was I helpful or was I playing Yahtzee? What about those last few moments before bedtime, I should have put her in the stander or read a few more books. Why didn't I make that sensory board today and call that new specialist? 

Yes, the kids are in bed and I am wide awake feeling anything but a supermom. I feel like a failure. I pray to God to forgive me for my selfishness and then I squeeze in some desperate prayers for life to be more normal and for Lottie to improve, then I sort of do a take back and ask God to forgive me for not being content and trusting his plan. 

I lie in bed in that metaphorical tiny dark room with doubt papered all over the wall. But tonight I choose to look through that smudgy window. I dare myself to believe that there is life on the other side, that tomorrow I can wake up feeling like supermom again and maybe be content in what I can do or possibly rearrange things to make the day more beneficial. That smudgy window tries to hide a lot but it does not hide the brightness that are my children. 

It can't hide Charlotte standing on the trampoline for the first time today. 

It can't hide her infectious laugh and giggle. 

It can not hide her brushing her teeth on her own 

It can't hide the friendships she is making at school

It can't hide the love she shares with her family. 

And her best friends: 

And most importantly it can't hide that God knows the plans he has for her. Plans to prosper her and not harm her, plans to give her hope and a future!! (Jeremiah 29:11) 

When I view it through that lense, the mix between the smudgy windows and the raindrops on roses seems to be ok, maybe we can't see all the intricate details of the raindrop or the rose just yet but actually I think it's better. We have an original view. A view that will make that drop of rain even sweeter someday. 

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.