5 New Things Zoey Has Been Hearing

We have been hearing a lot of new things in our home lately. Many of these are in direct response to Zoey’s most recent appointment about her hearing. A little over a week ago, Michael and I took Zoey to pick up her hearing aids for the first time. We had a few quick lessons in cleaning, caring, and placing them. The audiologist then handed me a ringing, bright pink bundle of tubing and casing to place on Zoey myself. Sidenote: sometimes I build myself up for the responses of my kids throughout the day. Often they aren’t nearly as excited about something as I am. This was not one of those times. I was truly not prepared for that first week at home with Zoey and her new hearing aids. Here are my favorite 5 things that I heard from her for the first time in those seven days.

5. I am now hearing noticeable distinction in her phonics. This month we are reviewing single-letter sounds with a new curriculum. Zoey has been able to recognize the differences between the letters for awhile. However, her version of many letters and short vowel sounds had been very similar. More recently, she is learning phonograms fabulously now that she is able to clearly hear them. For those interested, I will have much more to say about the language arts program we are using once we have made some more progress through the first book. Today we completed Lesson 10, and thus far it has been a huge success.

4. We have heard a much easier attempt at every letter in the alphabet. Twenty-five out of twenty-six letters are completely clear now, albeit after a bit of repetition.

3. I am usually hard-pressed to think of a time when she has used more than three intelligible words together in a sentence. While at the clinic, the audiologist gave Zoey a teddy bear with a cape and felt hearing aids at the same time as her own. Later that weekend, one evening she explained to me that it was, “Super Bear with Super ears, like my Super ears.”

2. She has discovered a new layer in real animal sounds (as opposed to imitated voices from story books).  My awareness of this new development first came when we were outside in our yard. The older two kids were climbing a tree in our front yard while the baby napped, and our border collie was keeping guard in the fenced-in backyard. This is a common arrangement of late, and even in her older age, our dog remains ever vigilant and loyal to her territory. We live in a dog-filled neighborhood, which means inevitably there is some sort of interaction going on every day, yet somehow the noise must have continually escaped Zoey until this moment. She stopped mid-climb to exclaim, “I hear Salem barking!”

and my #1 memory of Zoey’s first week with hearing aids…

1. Immediately after I placed a hearing aid for the first time, still in the audiologist’s office, I looked at Zoey once the little battery light started blinking. I asked if she could hear me better. She looked straight into my eyes (which rarely happens) and with genuine excitement exclaimed, “Mama! I hear you talking!” I think we were all a little teary-eyed for that one.

    Love big: What would you do?

    What a week, and it is only Tuesday. I have been wracking my brain on if and how to respond to something for the better part of two days. Then, this article came across my desk, and all things came to a halt. We talk a lot about how we are raising our kids to live big, love bigger, and be kind, always.  But it is awesome to see other kids doing things that exemplify this.

    The long and short of the article is about Blake’s Big Heart. This boy, Blake Wainwright, is doing something awesome.

    Love Bigger - Blake

    “When Blake Wainwright’s sister was diagnosed with Craniosynostosis at four months old and needed skull reconstruction surgery, Blake wanted to do something to help the hospital that was helping his sister.”

    Blake is taking up the banner of a sibling, and showing nothing but love, bigger love than many.  In just a few years he has raised $4,000 for UNC Children’s Hospital, where his sister has received care for her Craniosynostosis. $4,000 from a boy who is now eight years old. Let that sink in a little bit. An eight year old boy is raising money for the hospital that is taking care of his sister, because he wanted to do something to help.

    Love Bigger: Why is this important?

    In light of all the things going on in the world today, this story is the reminder of all the love that is out there. Ladies and gentlemen, what Blake is doing is rare. There is a lot of people out there that stand with mouths agape as they face things like Craniosynostosis. But Blake is showing us what it means to love bigger. Here is a link to his Facebook page if you want to stop by, give them a like, and tell him how awesome he is. After all Blake is showing us all how to…

    Live big, love bigger, and be kind, always.

    The Importance of Video for our Children

    We live in a state where technology surrounds us.  It is a part of all that we do. Quicker access to take pictures, and video, of our daily lives seem trivial to some.  But, as we are getting back into the swing of things, this state is not lost on me. In fact, I noticed something last night that made me pause. Something awesome.

    In the middle of archiving a video that we shot a few weeks ago, I decided to watch it. Normally, I do not do this. I just drag it to the archive, wait for the prompt to finish and move on. But, I double clicked, and it played. Having some time, I decided to sit back and watch the video play.  I listened as my beloved narrated the scene, and watched as Zoey and David played.  Their laughter filled my ears.  I listened as Zoey ‘spoke’ with David about the tower they were building. Upon hearing this, I was startled. I sat up and rewound it. Playing it over and over again. With each repeat of Zoey’s ‘speech’ a smile broadened upon my face.
    Zoey building a tower for the videoDavid getting ready for a video about building a tower

    Why did Zoey’s ‘speech’ on the video cause me to pause?

    I reference Zoey’s speech abilities with quotes here because, well. Let’s talk about that for a second. Due to the structural issues that Zoey was born with, due to her Craniosynostosis, things like eating and speech have never come easy to her. We have been thankful that David, since very early on, seems to be able to understand her, perhaps even better than we do.

    But that is the thing. Kati and I can often understand what Zoey is trying to say. We live in this world where many around us look to us with a perplexed smile as they wait for us to decipher.  We roll with it. But, we often lose sight of the advancement she is making.  Watching this video, I realized that in just the last few weeks some astonishing advancements have been made.

    It caused me to reflect to the other night.  After cleaning up the dishes from dinner, I handed Zoey a bowl of ice cream. As I stepped away from the table a sweet sound came from behind me.  My daughter saying, clear as day, “thank you daddy”.

    Why the video we take is important to us?

    The videos that we are capturing are not for vanity. They are to show us the steps that our children are taking. They are moments in time, forever captured, to show where they are.  Down the line, we can reflect at where they have been, and see the huge strides they have made along the way. These videos are the archive of our successes, and failures, as we teach our children how to…

    Live big, love bigger, and be kind, always.

    Updates, Updates, SOOOOOO many Updates

    We are STILL getting caught up on everything.  It does not help that we are at the busiest part of the year.

    We have started the slew of birthdays for our extended family.  We average one a week for the next two months. Seriously.

    There is also the garden, that is starting to come along nicely.

    Plus there is the general building, fixing, creating, making, that we all do.

    I also have some projects that should be starting soon, and I still need to share my most recent.

     

    Life, all-in-all, is awesome! We are not complaining, but we hope to get back to all the things soon.

     

    Thanks for hanging in there and helping us…

     

    Live big, love bigger and be kind, always.

    A new day, a new fear arises.

    “Courage is resistance to fear, master of fear, not absence of fear.” – Mark Twain

    A new, and great, fear that just came across my inbox, is the potential changes that are being discussed for Medicaid.  Five years ago, I would have paid it no mind, but now I have no choice.

    Though nothing is final (let alone 100% confirmed) there has been talk about changing Medicaid to a block grant system.  This would (potentially) reduce the funding that states receive, and heavily effect medical waivers. How can this be? After reading the article in Disability Scoop “With Talk Of Medicaid Changes, Waiver Services May Be At Risk” (Link HERE)  I find myself, yet again, typing in a flurry.

    My daughter receives the amazing care that she does thanks to a medical waiver for her Craniosynostosis. There are countless ways (too long to discuss here) that her waiver has helped her, and our family.  It was also no easy task working through the waiver. Not because my daughter does not qualify, but because the system was a little broken when we first tried.

    After many months, and moving out of a county which we will most likely never move back to (#grudgeholder), our fighting paid off and a waiver was granted. The sigh of relief has yet to cease from this moment. I broke down in tears over reading the letter letting us know Zoey was now covered. Not figurative tears, full on, fall to my knees, hold my baby, rocking back and fourth tears of joy.

    So, what am I going to do about it?

    First and foremost, I am going to pray.  My prayer is for clarity and discernment for those having these discussions. This includes myself.

    Second is that I will continue to speak.  My journey has been to create a place of light, support, and strengthen.  I am unwavering in that.  I also realize my place as a voice for the voiceless.  Even though my daughter is making leaps and bounds in her ability to speak, my voice has yet to grow tired.

    Finally, I will research and fight when needed. As I stated, this is not something that is confirmed will happen.  There is a good deal of, shall we call it, “early information” that seems to be making its way to news desks. More needs to be known.  If, as more is known, it becomes clear that this may happen, I need to make my voice louder.  Exactly how, that remains to be seen.

    For nearly five years I have fought too long and very hard for my daughter to have a ‘normal’ life, to have a pen stroke take that away…. armor up, it is going to be a heck of a fight.

    Live big, love bigger, and be kind, always.

    Trailblazing in the dense woods, watching others leave.

    Part of being a trailblazer often means doing something unique, and strange.  But, that is where I find myself. Trailblazing as a dad who openly discusses what it is like when you have a child with cranio. Also, talking about how it has changed your view on fatherhood, and enhanced your skill set for your other kiddos.  Trailblazing is not for the weak of heart.  When it comes to cranio, trailblazing is all I know.

    Google News, various medical journal subscriptions, and scholarly articles often fill my inbox letting me know that out there, somewhere, cranio was mentioned. Many times, these are the things that I read first thing in the morning.  Let me tell you, there is not much of a better way to start your day then by kicking back and reading a medical journal where they talk about the statistical skull geometry in pediatrics for the basis of development of anthropomorphic test devises to aid in recovery.  But, then again, I could just be weird.

    This article came across my feed this morning, and something about it struck me.  After reading it a few times, I realized, that there is a glaring subtitle that MANY in the cranio community have grown far too accustomed to.

    “Doctors had previously told eighteen-month-old Finley’s mom that his condition was nothing to worry about.”

     

    Let that sink in.

     

    A mother, goes into the doctors, worried about her little one, and is told that there is nothing to worry about.  This happens, not just for cranio, many times. The idea of parental intuition is a WHOLE different topic, for another day.

    In many ways our family was extremely lucky when it came to Zoey being born with Bicoronal Craniosynostosis.

    The midwife on duty just happened to be the only one on staff that had just happened to have delivered a child with cranio a few months prior in Australia.

    We just happened to be at a hospital where one of the top rated craniofacial doctors just happened to be working.

    Oh, and just happened to be at the hospital that day, just a few floors up from the NICU, and just happened to be free when the midwife contacted her.

    The same midwife who just happened to know of this doctor in the hospital based on a conversation about the baby that she delivered in Australia.

    This doctor just happened to be able to get to the NICU (even before I could) to see Zoey, and instantly was able to diagnose her cranio, have it charted, and begin all the things that were needed to get us where we are today.

    We also just happen to be followed by a team that has rigorous open communication, briefings, and a lack of rotation.  This means things like for the first five surgeries that Zoey had, we had the SAME anesthesiologist, the SAME nurse, and many of the SAME people in the room. This means that a phone call and an email were sent to our selected (by chance) pediatrician (we love this guy, really) so he had answers to his questions from another doctor before we even saw him. Just so he could focus on her care, and our questions as well.

    We have been blessed.  Very blessed.

    Many are not granted this scenario.

    They spend months looking for answers.  Saying the same things to countless people wearing scrubs and white coats, all with the same look in their eyes.  Until, it just so happens, that they come across the one person who knows. There is a large sigh of relief as they begin to take the steps that many knew were coming, but were just waiting for someone to show them the way.

    Regardless of how we started down the path that surrounds Craniosynostosis, and not paying mind to the fact that all of our paths are different (hey, we are all in the same forest at least); there is often a battle cry that arises from our lungs.

    We want more people to know about cranio, so countless others do not have to spend months (or years) in the briars blocking the path.  Granted, none of us would choose to be on this path. However, there are some of us out there trailblazing so others have a clearer path.

    And then, there is a stark and enraging thing that happens.

    For many, they are able to have a single surgery, and they are on the other side.  Their lives go on as though nothing is wrong, and their voices grow silent.  I have seen countless mom-blogs go radio silent within months of their single surgery. Many accounts are deleted or completely re-purposed within 18 months. I am not saying that the mother in the article will cease on her mission.  In fact, I hope that she carries on the banner and makes great strides in raising awareness. I see having her story told in an article in Cosmopolitan as a huge step in that mission.

    However, I have been trailblazing for awhile now.  As much as I hope otherwise, I will, instead, suggest that it is far more common for her voice to grow silent over time. Honestly, I get it.  If we were in the position where we only needed a single surgery to repair Zoey’s cranio, we too may have been able to move on with only memories.  We may have been able to move significantly past every tense moment, the times in surgery, the times in recovery, the endless research. For us, and for Zoey, this is not the case. Perhaps that makes us special. Perhaps that is what makes us the trailblazing family that we are.

    Too often crowded social spaces are full of the battle cry, only to have the resounding voice grow dimmer and dimmer.  Frequently there are those that find these groups when they need them. They find comfort, they find peace, they find direction. The speak of doing great things to raise awareness, only to grow silent over time. There are a few, like us, that stick around, and answer call after call for help. But the fact remains, that many have left.

    This is why I am trailblazing.

    Yes, I am still here. My deep, resonant voice has been echoing in a room often not occupied by other men for almost five years. Trust me, I am constantly on the lookout for other dad bloggers openly discussing craniosynostosis. I have yet to grow weary in my attempt to carry the banner of awareness. For me this means helping professionals understand what cranio is, and what it looks like. This is so that when they see it, they know what to do.

    This also means exposing what life is like for us, as a family.  Showing  what my daughter has been through, and what she continues to go through. Just so others out there looking for answers can find them here.  I have yet to falter in speaking. I have yet to lose my desire for teaching all those that I come across.  Watching countless others wax and wane in these woods has been, interesting.

    But I am not finished.

    Live big, love bigger, and be kind, always.

    Fatherhood: to carry on the conversation from the Vlog

    Fatherhood has to be one of the toughest things I have ever embarked upon.  It is also the thing that brings me some of the greatest joy.

    Important Note:

    IF you have not seen the vlog that this post pertains too, stop what you are doing and go to the link here:

    Vlog

    And spend less than eight minuets getting to know me a little better. I will be referencing things that I spoke about in this video here, and context may be important.

    Ok, back to what I was saying:

    Now that you have watched the video, let us continue on with the conversation.

    Right out of the gate, I want to thank those of you that have been following along for the last few years.  Our journey has been rather unique, to say the least, but I hope that you have seen that I try to make the best of it.

    I guess that I could roll up the topics into a few points, and discuss them a little further here.  Please bear in mind that we are still figuring out how things are going to work with our Blog and Vlog, so let’s see how this works!

    Fatherhood:

    From the beginning, my adventure into fatherhood has been overwhelming. Not many parents have the ‘opportunity’ to get to know their child as well as Kati and I did.  With all of the tests and conversations that surrounded Zoey (many still do to this day), we had the opportunity to get to see how her bones were developing, how her brain looks, and much more.  However, looking back, I see that I had a choice that I had to make early on.  I could either embrace Cranio, and all that it brings into our lives, or I could live in fear of it.  Out of the shear love of my daughter, I faced cranio, and have embraced it.

    It is interesting to realize that in these (almost) five, short, years the ways that I have learned to be a dad.  I saw a quote the other day that stated motherhood was natural and fatherhood was a social construct.  Now, I could fly off about the wording of that quote, or, I can point out the flaws.  Simply, the social construct that surrounds fatherhood is a carryover from the 50’s.  There are currently so many working on changing this view. I, proudly, am one of them.  The concept of fatherhood needs an overhaul, just as much as does the concept of what makes a man.

    Soapbox moment (sorry):

    The topic of fatherhood makes me emotional.  For some of you, it was plan to see in my video.  There is a love that burns like the fire of a thousand suns for my children.  Fatherhood has placed my heart on my sleeve, and I am not at all worried about it. Far to often the voices of dad’s goes unheard.  This is based on the social construct that dad’s have little to do with raising their children.  They just go to work, come home, and help.  This social construct surrounding fatherhood does not stand in MANY of the households that I know of. It surely does not hold in mine.  It is part of my journey of fatherhood to show this to my children. To have my daughter know what to expect, and my sons to know what is expected.

     

    How has it made me a ‘damn good dad’?

    I really do mean what I said in the video regarding not taking the title of “Cranio Dad” lightly.  For all the ups and downs that I have been through this far, Fatherhood has been a grand adventure.  I have been able to take so much about what I have had to learn to be the kind of father that Zoey needs, and apply it to how I am raising David and Jacob.  By ensuring that there is equal 1:1 time, that I focus on the activities that bring them wonder, and by getting to know them, I am taking all the steps that I can to be the dad that EACH of them needs.

    Needs vary greatly, and every child is different.  One of the biggest things that I learned as I entered fatherhood is that we need to pause, as parents, and wait to see who each child is going to be. That is the hard part, and also the avenue to produce the greatness that we strive for as parents. Waiting. Letting our little ones show us who they are, what they like, what interests they hold dear. It sucks, but I would rather be their champion than their absent-minded coach. Perhaps that is why I feel I am doing my best to be a damn good dad.  Because, even though I do not take fatherhood lightly, but I look at it differently than most.

    Well, that does it for now.  As we keep saying, please feel free to continue this conversation with us.  Subscribe to our blog for daily snippets, our vlog for more conversations, and comment with your thoughts.  We want to hear what you think, even if it differs greatly from our point of view.

    Live big, love bigger, and be kind, always.

    Creepy Much?

    This is the third lock of hair I have found in our house this afternoon. I trimmed Zoey’s bangs on Friday, and apparently she now has the hair-cutting bug. I asked David if he was pulling her hair out. (There is something about having her scalp pulled back from her skull a few times now, where it doesn’t actually take as much effort as you might think to pull her hair out completely by the roots.) In response, he ran off and brought back my hair-cutting scissors from a random new hiding place, claiming she had cut it. Ugh. I have been determined for Z to have long, well-styled hair at least once in her life, but she seems to have other ideas. It’s also kind of creepy to keep finding full locks of hair under tables all over the house. 

    Our 5th September

    It’s hard to believe we are already celebrating our 5th September as a family affected by a child with craniosynostosis. Celebrating because there are so many mini-milestones that became so important, new struggles that have been overcome, and constantly new obstacles that only God knows how we grow and move ahead through them. Zoey has brought an amazing, unique perspective to my world. She never stops trying, never gives up, and faces every struggle head on. In her mind there is never another option but to make life work so that she can participate to the max. She has inherited every ounce of stubbornness from both my husband and me, and has used it all in the best possible ways. She helps me to appreciate what I might have otherwise taken for granted, and encourages me to find new pathways when the common routes don’t seem to work for us. So yes, today we kick off our celebration of another September dedicated to the awareness and acceptance of craniosynostosis. Join us and maybe learn something new!

    What Happens When Big Things Happen?


    You may have heard me say something like this before, but when our child has a significant level of differences outside the typical curve when it comes to development, learning, and perceiving the world, every little step is openly celebrated as a significant milestone. For us, now that Z is 4 years old, these milestones include every new letter that Zoey can say clearly, every new food that she enjoys eating on her own, every attempt to interact with new friends despite knowing that she will most likely not be understood, and every household/life skill that she masters independently and voluntarily. With so many little things to celebrate, what happens when we get to the big things? Most of the time, we cry. Tonight is one of those nights. We took down Z’s toddler bed and graduated her to a twin. Her toddler bed is a 4-step convertible, so CranioDad and I re-lived putting it together as a crib before she was born. He has always been very protective, and I had to smile at how overly tight those bolts were. I thought about the day we were able to remove her last guard rail while her little brother was in his own convertible crib. Recently we recognized that our house and family configuration doesn’t allow the space for her to use that same frame as a full-sized bed right now, which is the last stage for her bed. So today we took down her bed of 4 years, and gave her a big girl twin bed. She is ecstatic and her brother is very happy with her. And the grown-ups cried. 

    Our new baby boy will need a crib, and we are passing D’s convertible crib down to him, which means D is getting promoted to a twin bed. We felt it only right that Z as the oldest should get her twin bed first, even though she would most likely fit a toddler bed for a few more years. So tonight is her night to be the oldest, in her big girl bed, while D spends one of his last nights in his own toddler bed. I am not ready for any of this.