Puberty is the Great Equalizer

Dear Declan:

Wow… your thirteenth(!) birthday is upon us already! I am stunned at how quickly you’ve reached this milestone, and can barely believe we’re saying goodbye to things from your younger years in preparation for the teenage ones.

While I’m in shock that we put “1” and “3” candles on your cake today, I’ve also wondered for some time how things would look for you when you reached this age. At the time of your birth we were in crisis mode, simply praying that you’d survive such an early arrival; it was impossible to think ahead, or imagine what your future might look like, because we didn’t even know if you’d live through that first night, or the many months that followed.

But you beat incredible odds, over and over and over again, and started to thrive. You hit milestones we never knew we’d see, and I began to understand that tenacious spirit I’d prayed for on your behalf was a gift that God had ingrained in you even before I knew you’d need it. 

I’m forever grateful that you had that asset in such a tiny, 2-pound package; I know that’s at least a part of why you have survived so many challenges, and have faith it’s a trait you will use in your life. I hope it’s something that helps others, too; you are an incredible example to me of what it looks like to keep trying, and to keep facing fears. I know others will benefit from your experience as you share your story.

Many years ago, when we were at our wits’ end with the behavior challenges that presented as part of your brain’s dysregulation, one of your providers told us, “Puberty is the great equalizer.” Oh, how I prayed that would be true! Now, as I’m watching you navigate your way in the world more independently, I think I might need to search him out in his retirement to tell him that he was right. Or, at least, that he was on the right track. So are you!

I’ve watched you grow and change so much, especially this past year! So many of the “little boy” things that I’ve cherished about you are slowly fading away, and they’re being replaced by a young man who makes me SO proud! You’re saying “yes” to trying more new things, and it’s exciting to watch you push past fear and explore different interests. I hope you always have a curious spirit, and a willingness to at least give a shot to something that might enrich your life.

I’m excited you’ve decided to try band, and it’s a joy for me to be working in the kitchen or the office, and hear the light “ding” of the xylophone as you practice your music for the week. Some of my fondest memories are related to band, or other musical groups I’ve been part of throughout my life. I hope the same is true for you!

I know you’re concerned about not picking up the lessons as quickly as the other kids, but I also know you’re committed to working on what challenges you. I hope you always keep that perspective in mind, because I know it will serve you later in life, too.

I’m also thrilled that you’ve begun to advocate for yourself. When you told me you had some uncomfortable conversations with kids who were belittling you because of your disabilities earlier this year, I was stunned that you handled it all by yourself. I’m so proud of you for asking them to change their behavior and, when they wouldn’t, going to an adult in charge. That’s not an easy thing to do. 

When you finally shared the story, my mouth was on the floor! I especially loved the perspective you had when you said, “I handled it, and we’ve moved on.” Declan, there are adults who could take lessons from you in keeping that attitude while navigating something unpleasant. Well done!

Just last week, I heard positive comments from all of your teachers about how hard you are working in their classes, and how you’re clearly trying to understand different subject matter, even though they know it challenges you. That’s definitely an upgrade, too. I know it’s still tough for you to catch verbal instructions, but they all know you’re working on that, and they are doing what they can to help you understand. 

In case you ever doubt it, I’m going to remind you: always try your best. No matter the outcome, we’re proud of you for putting in the effort. Grades in school certainly are an important part of that environment, but they say nothing about what is in your heart, or how funny and engaging you are. Later in life, nobody is really going to care if you got an A in science or a C… unless you want to be a scientist. (We can talk about that more later.)

Also last week, your para-pro shared with your dad how other kids want to hang out with you… that they want to get to know you. She also said that you’ve been greeting students and giving them “high fives” in the hallway. I bet you didn’t know I cried when I heard that, because it touched my heart so much. I’ve been worried that you’ve missed out on a lot of friendships due to educational circumstances that aren’t your fault, so I was tickled to hear what you’ve been doing. Keep it up!

It takes time to build relationships, but I know you can do it. I pray this newfound interest in others helps lead you to your tribe, so you can start making connections that could last a lifetime. I’m still in touch with a handful of my “besties” from preschool and kindergarten, and cherish that we have such a long history of fun memories together. I’d love to see you find your own version of that, and am hopeful you will begin to do so as you explore youth group at church, and extra-curricular activities through school.

I’m so excited to see you head into your teenage years, and pray they will be kinder to you than the past twelve have been. You’re an exceptional young man – smart, funny, unendingly curious, and incredibly compassionate – and I am honored to be the one you call “mom” along your journey. I hope this next year is filled with fun, laughter, and loads of blessings.

Happy 13^th birthday, my teenage son! I love you SO much!

XO,
Mom

After Death

Writer's Note: Last fall, I enrolled in Megan Devine's "Writing Your Grief" workshop as a means to process the spiral of emotions relating to Declan's premature birth that surfaced annually. Upon completion of the course, I was admitted into the WYG "alumni" group, which includes a private Facebook page where we are free to share our continued writing with one another.

After Thane's death on Monday, November 13th, I was barely functioning. I knew I would, in time, want to process on paper the myriad of emotions swirling through my body; I just didn't know when the words would appear. When I was home alone Wednesday for the first time, and the silence was too much to bear, I found myself drawn back to the solace of this beloved group. There, I found the space to say what I felt needed to be said. I'm grateful for this sacred, compassionate Tribe.
~Julie

Damn it. Now Declan has experienced significant loss, and is beginning to understand how After feels so different than Before. I had hoped to shield him from Grief as long as I could; after all, he's only twelve. But I couldn't stop Death.

Thane was almost twelve, too, when he left this world Monday night. He and Declan grew up together... ran together... played together... cuddled together... loved each other unconditionally. God, what a gift he was.

Thane was my rock through so much loss... the absence of family members through death and estranged relationships, fractured life-long friendships, my health challenges and diagnoses, Declan’s continuing disabilities from a pregnancy that ended far too soon, financial hardship, marital stress, and other things I’m not sure I can name out loud. 

He was my comfort and support, my companion and safety. He let me cry without needing to fix anything, never made any commentary about my process through grief, and never judged me. He'd simply let me spoon him, and lie there, listening to my words. Or he'd just sit with me through my tears. He seemed to know when I was done crying, because he'd give a gentle lick on my hand, or kisses on my face when I finally stopped to breathe.

My head knows the decision we made was the "humane" one, given the circumstances. It would have destroyed me if he had suffocated in our hallway on Sunday night. (God, I was petrified that was going to be how he exited this world. We were up with him the whole night, just trying to help him get comfortable.) I couldn’t let him suffer. But, even so, somehow my heart just doesn't understand. How do I explain to myself that letting this gentle spirit go was the "right" thing to do? Nothing about it makes sense. Nothing about it feels even remotely okay. 

I wasn't ready for Thane to die. My righteous indignation says he should still be here, beside me right now. I'm desperately trying to find comfort in the knowledge that we surrounded Thane with love and support, and that I got to spoon him, stroking his puppy-soft ears as he took his last breath, but I just can't stop crying. I wish with every fiber of my being that I could change the outcome. But I can't.

His absence is profound. The silence, deafening. Our memories together are everywhere. The questions keep coming, and I don't have the answers. How am I supposed to explain the After of Death to Declan when I don’t even understand it myself?

In Praise of Disabilities

Dear Declan:

Did I surprise you with that title? I bet I did. I’ll tell you a secret: I surprised myself, too. When those words popped into my head recently, I actually stopped for a moment and asked myself aloud, “What?!” Surely one can’t think of any disability as worthy of praise… can they?

As I’ve pondered this idea more and more, and mulled over various viewpoints surrounding the language used by our “community,” I’m convinced “disability” is an important word, and is one we should use frequently and freely. Please let me unpack my thoughts on this topic a bit more for you…

Words are important. They matter. They can make a positive impact by supporting and uplifting, or be incredibly hurtful by demeaning and diminishing. Some people will say words don’t really matter. Others will say “disabilities” is a limiting term, and shouldn’t be used at all. Still others will joke that your father and I are “snowflakes” for advocating for language that is more compassionate, inclusive, and respectful. I disagree on all counts.

I’ve earned my stripes as a “disability parent” and have thickened my skin considerably to insensitive comments over the last (almost) twelve years of navigating this previously-unknown world. Don’t get me wrong -- it still hurts when someone makes a judgment about you, or comments on our “lack of discipline” because of something you’ve done when you’re dysregulated. It’s especially painful when those words come from people close to us – those who we thought would be our support network.

In those situations, I try to remind myself the people making the judgments have no clue what our journey has looked like thus far. They aren’t plugged into our lives, so they are judging us based on their limited understanding of our situation, or are making assumptions based on what they imagine our life looks like, or what they've heard from someone else. Some don’t even realize you have legitimate medical disabilities, and simply write off your behavior to lack of boundaries or consequences. Further, they often apply outdated parenting “concepts” that we know aren’t healthy for you, aren’t supported or recommended by the specialists we work with, and simply don’t work for you.

I remind myself I know what it takes to handle the day-to-day challenges that come with being a caregiver for you – disabilities and all -- and how important it is to advocate for you until you can do so for yourself. That’s what keeps the fire burning in my belly to make sure you are treated with dignity and respect, and why I will advocate for you until the day I take my last breath.

Declan, I am certain there is a reason – many, perhaps -- you landed with us, and not another family. I used to wonder how in the world God thought it was a good idea to entrust your father and me with such a huge responsibility. But as I watch you grow, and marvel at the wonderful young man you are becoming, I understand more and more every day why He chose to bless us with your presence. 

I doubt some of the folks who would carelessly lob hurtful words or judgments at you/us have any inkling of what this life takes, or have the fortitude to handle it. That’s okay; I wouldn’t want them to handle it. You deserve far better than that, and it’s their loss to not know you the way we do.

I believe God knew we would do everything we could to ensure you have the best life possible, and that we would love and nurture you through all of the challenges. That includes how we hold people accountable for how they treat you, and the words they use when talking to -- and about -- you. It may make them uncomfortable when we hold for respectful boundaries, but I’m not going to accept that as my problem; it’s theirs to figure out (or not). When I know in my heart that it’s the right thing to do, I will continue to do so. You deserve nothing less.

The good news is that there are plenty of people out there who are listening, and who do care. I share these pieces of our life for them (and for us as well) in the hope we all can learn how to be more compassionate to those who are different. The blessing that continues to appear from this level of vulnerability is that new people are plugging into our Tribe all the time. 

It’s such an incredible feeling to meet someone else who says, “You, too? Oh, man – I get it.” Even if the diagnoses and details aren’t the same, there is solidarity of spirit in the disability community that is empowering and relieving. Honestly, I don’t know if I can do justice in explaining the connection. There is just something incredibly relieving to me when I hear someone else resonate a level of understanding about our life. Just the other night, I found myself in a group conversation with people who are fairly new to me, and I cautiously shared about your disabilities. Suddenly, a handful of others were chiming in with their own situations, and a number of us found ourselves crying happy tears that we had found more of “our” people.

So why this praise for “disabilities” as a term? Why advocate to use it freely in our conversations out and about in the community? Why talk about disability rights, or disability needs? Mainly because I’ve found -- time and again -- that people will diminish your legitimate need for resources, inclusion, and support if we use a softer term like “special needs” instead.

Unfortunately when I used “special needs” in past conversations, the other person – from family members to school personnel – inevitably would say, “Well, all kids have special needs.” Ugh. No. Not all kids have special needs, and the distinction is important.

Yes, all kids have needs, and I understand all kids are different. Some children will have challenges with things that come easily for others. Some will respond really well to incentives or consequences, while others will barely blink at their presence. But please – please -- don’t suggest that a tough semester of math with a difficult teacher is in the same “special needs” category as navigating daily life with a neurological impairment. Doing so diminishes the challenges that come with actual disabilities, and is terribly dismissive to those who are living life with them. (And, if I’m being completely honest, it will earn a knowing eye roll exchanged between Hubby and me when you’re not looking. What is it they say – #sorrynotsorry? Yep… that.)

Merriam-Webster’s definition of “disability” is “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”

I think that definition is solid, though I would add that a disability doesn’t necessarily mean someone is automatically unable to engage in a task at all. Instead, it may mean that they need different accommodations -- a smaller environment, more time, physical gear, fewer distractions, or any number of supports – in order to participate.

A disability also doesn’t mean a person is “less than” anyone else; it simply means they may need to navigate life differently. Dear Declan, if you remember nothing else from this letter, I pray you will remember that. You are so much more than the sum of the challenges your disabilities present. Don’t ever let anyone try to convince you otherwise. You never need to apologize for who you are, or play small to accommodate someone’s insecurities, judgments, or willful ignorance.

We know you to be wonderfully bright, and incredibly funny. You’re thoughtful, curious, creative, and quirky. And, yes, sometimes your behavior is challenging. (I know you know this, because we have frequent conversations about it, as well as how that’s all some people can see in you.) But you’re also an incredibly compassionate young man, and that’s a joy to for us to experience.

Just yesterday when you found me crying in what I thought was a private moment, you asked if you could offer me comfort. That meant the world to me. You recognized I was hurting, and had the softness in your heart to ask if you could help. That, my boy, is an incredible gift. I pray you are able to keep that spirit of gentleness as you mature.

I will never know for certain if your disabilities are what have shaped your level of care for others, or if you would have that level of compassion anyway -- but I’m betting they at least play a part. Your continued efforts to understand and navigate a world that isn’t designed for the brain you have, while treating others with love and care, make me so proud. I admire your spirit and tenacity (most days, that is) and will continue to use the term “disabilities” when I talk about you. The world deserves to know you as you are, and I will praise the package that comes with your presence, disabilities and all.  

Love you, big much!

XO,
Mom

What's In a Name?

"What's in a name? That which we call a rose
By any other name would smell as sweet."

Romeo and Juliet ~ William Shakespeare

Dear Declan:

We’ve been having lots of conversations about your birth story lately, and I love that you’re interested in learning more about your entry into this world. You already have learned many of the details why you were delivered so early, but I don’t think I’ve shared the full story of how we came to choose your name. Since today is World Prematurity Day, I figured it was timely to capture my experience on paper for you and, perhaps, share it with others.*

In some ways, I think Shakespeare was correct in writing the above quote, but I also think he’s missing the perspective I maintain: a person’s name can carry a great deal of energy, and may have a significant impact on shaping his/her experiences in this world. You probably would have been every bit as engaging, intelligent, compassionate, and tenacious with a moniker different than the one you were given, but there is good reason why you have the name you do.

Your dad and I agreed we wanted to be thoughtful in our approach to choosing your name, and set out to make a list of our favorites. We knew a number of couples who chose their children’s names while their babies still were in utero, but we thought it was important to meet you first. We wanted to see you, and get a sense of your personality, and spirit, before making a decision we felt was significant.

We began by setting a few “ground rules” for our choices:

          1. No names of past boyfriends/girlfriends**
          2. No names on the (then) current “Top 10” list***
          3. Consider what nicknames might result from your

            given name****

At the time we began choosing your name, we didn’t know if you were a boy or a girl (and we didn’t care; we simply prayed for you to be healthy and happy), so we worked on lists for both. I’ll admit I had only one or two names I liked had you been a girl, and was struggling to find options your dad and I agreed on. But when it came to boy names, I had a list of seven or eight I really liked. He did, too! The funny thing is that a handful of our choices were the same – and we had ranked them in terms of favorites in a similar fashion. I took that as a sign you would be male.

It wasn’t until some time later, when I needed to have an ultrasound done to rule out spina bifida,***** that we knew for certain you were a boy. We laughed so hard when we saw you on the screen, because the technician showed us how your hand was covering your privates. Your dad chuckled, “That’s my boy!” and we knew you were going to be a lively spirit. We had called you our “little prawn” up until that point, but your movements onscreen every time we used the term seemed to indicate you didn’t like it one bit. So we started calling you Kiddo instead. Interesting how that nickname stuck, eh?

So… back to our list…

Together, we determined our top five names:

1.    Camden – Winding valley

2.    Carson – Son of Carr

3.    Mason – Stoneworker

4.    Callum - Dove

5.    Declan – Full of goodness
(This name also comes from St. Declan, a monk from the 5^th century. He founded a monastery in Ardmore, in what is now known as Co. Waterford. It’s said St. Declan’s stone has been the site of many miracles.)

We were confident one of those names would be the right one for you, and looked forward to the day you would join us outside my body, so we could decide. Little did we know then how that journey would unfold, or what energy would come forward in the process.

You know the backstory at this point, regarding how ill I was when I was hospitalized on the day that became your birthday. (If you’ve forgotten, re-read my post from your birthday eve this year.) When I was hospitalized, it quickly became clear that you needed to be delivered right away, and the tests/prep/procedures that needed to be done to make it happen immediately began.

In addition to steroid shots in my hip to (hopefully) support your premature lungs, and multiple blood tests to measure my platelets and liver function, I was put on magnesium sulfate to help keep me from having seizures. That stuff was wicked! It made me hot and nauseous, and my brain felt incredibly foggy. Some of the details of that day are lost from my memory, but I remember – with great clarity – when the finality of your name choice was made known to me. 

From the time I had checked into the hospital, until the time you were born (and for some time after), I didn’t have a moment to myself… except for one brief window. There were about a dozen medical professionals working with us that day --doctors, residents, nurses, lab techs, and more – and there was a constant flurry of activity around me. As I shared in my “You Smell Like Love” letter to you, all I wanted to do was be left alone so I could sleep. But that was not the case; your stats were constantly being monitored while I endured multiple blood draws so they could check my liver enzymes and platelet count.

At some point, your Grandma Kruse arrived, and she and your dad quickly made a list of who needed to be notified about my illness. They divided up the list, and grandma went to the hallway (for better reception) to begin calling family, friends, and church -- to fill people in, and ask for prayers. There was one lab tech finishing another blood draw, who was on her way out, when your dad asked if I minded if he went to the hallway for a few moments. I knew he had calls to make, and figured he needed a moment to himself, so I told him I would be fine.

Shock is an interesting experience. You might already know this in the cells of your body, given all you have been through; that said, I hope you don’t need to experience it again. I’m not sure I can do justice in explaining it, other than to say I felt more calm and at ease than I’ve ever felt in my life. I knew I was deathly ill, and I still had a significant amount of pain in my abdomen (I’d later learn that was due to my enlarged liver), but I had a sense of peace I hadn’t known before -- or since -- that day.

Since my blood pressure was dangerously high, the staff insisted I lay on my left side on the bed. I was horribly uncomfortable, but it was necessary. It also meant my back was to the door -- something I don’t like -- and I couldn’t see who was coming and going until they came around my side of the bed. I heard the door click as your dad left, and the room was silent for the first time in a number of hours.

As I lay on the bed, my mind started wandering through the events of the day, and I still couldn’t wrap it around the reality that I was preparing for an emergency C-section, more than three months ahead of your due date. “Surreal” barely begins to scratch the surface of my feelings, but it’s the best word I can find. I started thinking about you – what you’d look like, what your temperament would be – and felt all the love in my heart open to you in that moment.

It’s also when I heard a voice, as clear as your dad’s had been just moments before, that told me two things: “You need to talk to him, and tell him it’s okay. His name is Declan.” I craned my head behind me to see who was in the room, but it was empty, save for us. I would have thought I imagined the voice, but it wasn’t the same as the one I have in my mind. I am certain it was not the one I hear when I talk myself through nervous energy, or edit my writing in my head while I’m driving. This was something much larger than me. I actually felt a presence so palpable, I swear I could have reached out and touched it. I answered aloud, “Okay,” and begin talking to you – calling you Declan – and telling you it was going to be okay. Even though I had no clue, I knew. 

Soon thereafter, your dad, grandma, and the docs were back in the room, and we were on our way to the operating room. I wanted to tell your dad what had happened, but there so many other details we had to handle, and I was so tired. I figured I’d let him know later, hoping he wouldn’t mind that your name had been chosen.

Hours later, after you had been whisked away to the NICU, I was in recovery, being watched like a hawk. My blood pressure had already come down significantly, but the feeling hadn’t returned to my legs yet, and the staff was monitoring me closely (we didn’t know at that point if I would be able to walk again or not). Your dad and grandma were there, too, keeping me company.

Some time later, I started feeling the prickling of nerves in my legs, and we all cheered with relief that it seemed I would regain their function. It was at that point that your grandma pointed out how late it was, and told your dad to go get something to eat in the cafeteria – she would stay with me, and alert him if anything changed. 

As she sat by my bed, we chatted a bit about the day, and the craziness that was just beginning with your early birth. She told me that the nurses said I could be wheeled down to see you as soon as we knew I was okay, and I started to reply, beginning with your name before catching myself.

I remember her knowing look, and tone of surprise. “You already named him, didn’t you?” she asked. I replied, “Well… kind of. I mean, yes – he’s named – but I didn’t do it, and I haven’t told Jim yet. Do you think he’ll be mad?” And then I told her what I’d experienced. She sat there, tears shining in her eyes, and then got up to hug me in my bed. “Of course he’s not going to be mad at you! We’re all just so glad you two are still here!”

When your dad got back from dinner, grandma excused herself, and I told him the same story. He was misty, too. For the duration of my pregnancy, your dad and I always had joked that I got 51% of the vote in naming you since I carried you in my womb, and he only got 49%. When I called upon that 51%, he said, “Babe, after what you just went through, you can have the full 100%!”

Of course, we still hadn’t officially met you yet. (That quick whisk by my chest before you were placed in your isolette wasn’t nearly enough.) Eventually, my bed was wheeled to the NICU so I could see you. Your (great) Aunt Hazel and Uncle Bob had come to the hospital when your grandma called them, and I saw Uncle Bob sitting on a bench just outside the NICU as they wheeled me by. I asked them to stop, so I could tell him your name. (His family is from Northern Ireland, and we connected on our love of all things Celtic after my summer living in the Republic of Ireland many years ago.) He smiled broadly when I announced you were Declan, and told me he thought it was a “strong Irish name.” His approval felt like a blessing.

You were too ill for me to see much more than wires and monitors that first night (I was, too), and we all were exhausted, so we didn’t tell the hospital staff your name right away. We wanted to spend more time with you before inking your name on your birth certificate, so you were “Baby Boy Hayes” for a couple of days. It seemed to drive the clerical staff nuts, and they kept hounding us to complete your paperwork. In time we did, though we needed a correction because the person writing it down misunderstood us, thinking we were going with the Irish spelling “Deaghlan” instead. We knew that name would get slaughtered, so we went with the American spelling. That’s why we laugh so hard when folks in this predominantly Dutch neighborhood still manage to mispronounce it.

So there you have it, dear Declan. You are a tenacious young man, and spirited beyond the energy I have some days – but I know that’s how you’ve come so far when so many odds were stacked against you. I don’t know why or where you might need to call upon the energy of your namesake as you grow, but I trust it was bestowed upon you to help you remember – no matter what – you are always, always full of goodness.

Love you, Kiddo.

Mom

* I am always a bit nervous when I hit the “publish” button on these stories to you, because I feel so vulnerable sharing our history with the world… but I do it anyway, so others can learn (if they want) from our experiences.

** We also included bullies and other people with whom we had difficult/painful experiences in this rule. We saw no need in recreating that past experience with our new family.

*** Sorry about the “Top 10” thing. Who knew your name would end up in the #4 slot this year?! We’ve made peace with it by realizing we were part of the trendsetters eleven years ago.

**** No need to hear something like “Nick the d*ck” while out on the playground… ‘nuff said.

***** Long story on that one. Suffice it to say I had some genetic test results come back in the “abnormal” range, and we were told it was possible your spine had never properly formed. That’s another post all in itself.