The last few weeks, I’ve had some random instances of sharp, shooting pain in my lower back. This doesn’t come as a shock considering I’m lifting and carrying kids a lot, and loading Gage’s chair in and out of the car a few times a day. At a recent doctors appointment, they weighed Gage’s empty chair and I was surprised to learn it’s sixty pounds! No wonder I have to grunt each time I lift it into our SUV. I want to be stronger and able to care for my kids in the way they need, but I’m fully aware of my own limitations.
Thinking of my own aches and pains makes me think of how Gage’s little body must feel. His muscles are constantly in overdrive. You know that feeling when you’re stressed about something, or focused really hard on a task and all your tension seems to pool in your neck and shoulders? I imagine that’s how Gage must feel all over a lot of the time. When he’s working hard to do something as simple grasp a spoon, it takes several attempts and a great deal of focus and must wear him out. Even when he’s fully enjoying himself or super excited and laughing, he often goes into a full extension, with tense muscles from his head to his toes. I imagine that tension must take a toll on his body, and that my achy back is probably nothing compared to his.
And truly nothing can compare to an ache of a different kind – heartache. In the last several weeks, three other children with CMV have lost their lives due to their condition. There’s not an adequate way to describe the turmoil you feel while you grieve the loss of someone you only knew through photos and status updates online and a shared diagnosis with your own child. You can’t help but try to imagine what their families are going through, realizing you could never fully understand unless you’re in their shoes, and then hoping you never have to be. As heart wrenching as each loss is, I think one of the best ways we can honor their memories is to cherish the time we do have with our kids. Even with the aches and pains and added challenges, we get to have these precious souls with us day to day. Bringing joy through their smiles and laughs. Adding value and purpose to our lives. The simple gift of Gage’s presence is something I never want to take for granted.
So as Gage continues to grow, and his equipment grows with him, we’ll figure out better ways to manage the heavy lifting. Hopefully we’ll learn how to sense and better understand his pain and the best ways to address it. And without knowing what the future holds, we’ll strive to trust in God’s timing and treasure each day together.
What a fun week at Dynamic Strides Therapy! Gage started out riding Johnny Cash, then moved on to the ball pit. If that wasn’t enough, he wrapped up the session with a trip down the zip line!
It’s been a big week in the Wingo household. Several weeks ago we started a sticker chart for Caleb when he used the potty. He’s been having great success at school, but mixed results at home. One morning after having Caleb use the potty chair, I decided to let Gage give it a try. I waited a bit and thought, “oh well” and was about to lift him off when he started to go! I was so proud. Of course we had to make Gage his own potty chart too!
Over the next couple weeks Gage was given the chance to go on the potty a few times a day. He didn’t go every time, but soon enough was catching up to Caleb’s nearly full page of stickers (albeit with much fewer spaces to fill.) The race was on to see who would fill their chart first to get a prize. Caleb eeked out the victory on Tuesday afternoon! He was rewarded with a pretend fishing set.
Just a few days later on Sunday morning, Gage earned his final sticker! His prize? Green, slimy, fart noise making putty of course!
My diaper changing days may be far from over, but I am still one proud mama!
The bond between my two boys is special indeed. The other day, each time Gage would get upset and start crying, Caleb would climb onto the front of his chair and sing him a song. He’d then reassure me, “he’s all better.”
When I started this blog, I didn’t
really know what I was doing. I don’t have experience in web editing and wasn’t
sure how to register a domain name or what the heck web hosting was. I would search
Pinterest for tips on ‘how to start a blog’ and piece together instructions
that seemed to work. To be perfectly honest, so much is still a guessing game
and I’m learning as I go. Which seems appropriate given the blog’s title.
While setting it up, I would trouble shoot things to get them to look and work how I wanted. But even taking all that into consideration, one of the hardest parts for me was writing an ‘About Me’ section. Sure, I could tell you all about my awesome husband and my wonderful kids, but I had a very hard time describing what I was, who I am, aside from wife and mother. Months later, I had the same feeling when I was asked to submit a bio to the local newspaper in my hometown before the Tipton Prayer Breakfast. After stating where I went to college and worked, who I was married to and how many kids we had, I felt stuck and asked myself, ‘now what?’
I think there are a few reasons it’s
hard to answer the question, ‘who am I?’ Parenting any child requires so much from a person. It’s hard not to lose
your identity a bit in caring for a tiny human. Add to that the requirements of
special needs parenting—researching diagnoses, accessing therapies, learning
how to advocate for your child’s specific needs—and defining yourself by the
things you do for you kid becomes even more real. At least it did for me. And I’m
willing to bet I’m not alone in that.
I remember the first time Gage did a round of intensive therapy. I was pleased with the format and his outcomes, but my favorite part was the incredible therapists we were introduced to, one who’s a special needs mom herself. One day as we discussed the intensive format, she described how it can be a hard adjustment for parents. It’s easy to get wrapped up in all we do for our kids, which can become such a big part of our identity. The idea of taking extended breaks between therapy sessions rather than ongoing weekly sessions indefinitely, and using that time off to just live and enjoy life can seem like foreign concept. As I listened to her words, I got choked up because they rang so true for me. It was the first time I really recognized just how much I did exactly what she described—defined who I was by what I did.
Another thing that plays into my struggle
of figuring out who I am is the amount of change that’s happened in just a few short
years. When Evan and I dated and were newlyweds, we were so spontaneous! We
would come up with places we wanted to travel to and then just go. We planned
our wedding in three weeks, for crying out loud! I loved the freedom to do
whatever we wanted all the time. Becoming parents changed our lives in a big
way. A big, gigantic, amazing way. But so. much. change! I hope saying that
doesn’t give the impression that I long for the days of old or wish things were
like they once were. I love, love, love being a mom and feel like a more authentic
version of myself than I’ve ever been. But pre-kids, when my life revolved
around me, I could easily tell you about my love for travel, plan which concert
I’d be going to next, and invite you to happy hour to catch up. When I switched
gears to focus on someone else for a change, it became so much harder to define
who I was outside of Mom.
Even though I recognize this, I’m not sure where to go from here. I know that it’s a fallacy to define who you are by what you do. I know my worth is more than the roles I play. I also know that I’m still a work in progress. Maybe the things that make it hard for me to say who I am are shaping me into who I’m meant to be. Maybe someday I’ll have a better grasp on that. Until then, I’ll try to focus on whose I am and delight in the fact that I’m known and loved by my creator.
“For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.”
Monday was a day off for us. Both boys were out of school and Evan was home from work. With my job being remote, I didn’t feel any pressure to check in because all my colleagues were out of the office that day as well. We had no appointments to go to and our time was completely ours. It was wonderful. We stayed in our PJs as long as possible and made puppets out of paper bags. I was able to play, really play, with my kids. I mean sitting on the floor, dragging out every toy they requested, play with them, without a time limit. Of course we slipped in a bit of therapy in the form of practicing choices with Gage’s talker. He told me whether to build the race track longer, or make the cars go, or (his favorite selection) crash them together!
The thing was, we could actually do it. It felt natural and easy to incorporate therapy into playtime because we weren’t rushing out the door to get to the next appointment. Without the pressure to be anywhere, we really enjoyed our time at home. While the boys napped (at the same time, mind you) Evan and I relaxed and watched a movie. It was glorious. Perhaps it felt extra-special because it was a Monday, not part of a typical weekend and not just any weekday, but the first and sometimes toughest one. To top it off, that night Evan grilled a delicious steak dinner for us, which I decided was our belated Valentine’s meal. I honestly don’t remember what we ate on the actual holiday, aside from a giant heart shaped cookie.
That evening, I told Evan it was my favorite kind of day.
Though I have to question if days like that would mean so much were they not
few and far between. It’s easy to say I’d love for every day to be like that,
but if it was, would I appreciate it as much? It was a good reminder to me that
I shouldn’t take things for granted, even things that may seem small like a
weekday with no work, school, doctor’s appointments, therapy or anything else scheduled.
Thinking about it now has me reflecting on things I appreciate in my life, and
acknowledging that perhaps I value them more because they are somehow rare or
special.
One of these things is simply being a parent. I am over the moon that Gage made me a mom. Having him and Caleb is one of the greatest joys of my life. Sure, there are struggles that come with it, but I truly treasure having them in my life to love, cuddle and be silly with, and to learn and grow from and be challenged by.
Their health and happiness is another huge blessing that I really try not to take for granted. Yes, we’ve had some unsure and scary times dealing with seizures, treatment options, etc, but we’ve also avoided long hospital stays, severe illnesses and major surgeries up to this point. Sadly, that’s not something all special needs parents are able to say. I’m reminded of the battles other sweet kiddos are fighting all the time through their mamas’ social media updates. All too often, it’s more than just battling a cold or flu, or nasty case of pneumonia. There are kids who in many ways are so much like Gage, some with the very same diagnosis, who are literally fighting for their lives. Each time one of those battles is lost, it breaks my heart. I may not know these precious kids or their parents personally, but still feel connected. The time I have with Gage and Caleb as happy, healthy boys is something I never, ever want to take for granted. I’m so grateful to be their mom.
Another thing I’m grateful for is the time I spent as a full time working mom. Going back to work after I had Gage was hard. Much harder than I anticipated. By the grace of God, I worked for understanding and flexible people, and for a period of time we made it work. But that didn’t make it easy. Still, I don’t look back on that time and wish that things were different. If I’d been a stay-at-home mom from day one, I’m not sure I would appreciate just how good I have it now. In the same way, being home can be hard too. If there are times I feel discouraged, I try to remind myself how much I wanted this when I didn’t have it.
Would I love being a stay-at-home mom as much if I didn’t know what it was like to be a working mom? If every day were a day off, could I appreciate it? If it hadn’t taken a mountain of paperwork and long, frustrating wait for Gage to get Medicaid, would I value it as much? I’d like to think the answer to those questions is yes, but who knows? What I do know is that it’s so easy and tempting to take what we have for granted. I know that what I have is so, so good, even if it’s hard sometimes. So, I’ll try my best to always appreciate what I’ve got. But I could definitely go for a few more Mondays off!
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”
Yesterday, Gage had a procedure with his neurologist—Botox
injections to loosen up his muscles. It was our first attempt doing it without
sedation. I was nervous about it and relied on friends, family and Facebook for
prayers. And you all came through in a big way. I know that we were covered in
prayer as Gage bravely sat through 14 different pokes! He was so tough, tensed
up in my lap and only cried out once, near the end.
To rely on our support system for prayers during things like this is such a comfort to me. I truly feel like it makes a big difference in my own peace of mind. I’ve been thinking a lot lately about the power of prayer and what exactly that means. Are the outcomes of Gage’s procedure any different than they would have been if I hadn’t publicly asked for prayers beforehand? I don’t know. But what I do believe is by sharing our requests, not only am I comforted by an outpouring of support, those praying for us are able to see God’s faithfulness at work.
When I jotted down “power of prayer” as an idea for post, I had recently witnessed two friends receive incredible news on their adoption journeys. One of these friends, just one day prior, had confessed feeling heartbroken in the face of feeling stuck, and pleaded for prayers more than once in a Facebook post. She also acknowledged that God was expanding their peace in the midst of pain. I cried as I read her update, because in her own words, she had no good news to share and my heart ached for her. The very next day, things seemed to be on the fast track of bringing her daughter home, with step after step falling into place. I was overjoyed for their family, and just watching their story unfold the way it did was a wonderful reminder of how powerful prayer can be. But perhaps that power, the real benefit, lies not in altered outcomes, but in reminders and affirmation of God working things together for good.
Of course, there are times when things we pray for don’t turn out the way we hope. And no amount of waiting changes the outcome. While it’s much harder to proclaim how powerful prayer is in those moments, I still believe there is peace to be found, in the midst of pain. And that we can still tap into the power and peace of a God who loves us unconditionally, even when life is hard.
Although I wanted to share my thoughts on prayer for a few weeks now, what inspired me to go for it are the words of my 11-year-old niece. For a school assignment, she was asked to select a write about her word of the year. She chose “praying.” When I read her resolution paper, I was moved by her words and oh-so-proud. I’m so glad she gave me permission to share her words with you. Those are what I’ll leave you with today.
Hope is my 2019 word of the year. I settled on it after
realizing that far too often in the last year, I would say things like, “I’m a
skeptic” or “I’m being cautiously optimistic” or “I’m trying to manage my expectations”
regarding Gage’s care and his outcomes. None of these things are wrong or
inaccurate. But this year, I want to change my mindset. I want to throw caution
to the wind and hope for the very best. I want to be bold enough to do that.
The definition of “the very best” may have changed over these last few years
for me. But that doesn’t mean I’ve lost hope. It just means life is always
moving and changing and the things can turn out so much differently than we plan.
That’s not a bad thing.
When Gage was younger, I used to have recurring dreams about
him walking. I could never remember many details about the dreams, but the
image of him standing on his own and taking steps down our hall was burned into
my brain. I haven’t had a dream like that in a long time. I don’t know what any
of that means. But I think as Gage grows older and keeps teaching me about the
unique way that HE does things, my hopes for him continue to evolve. My dreams
for him living his best life will likely change as we both continue to grow and
learn.
These days, I’m hopeful Gage will have the equipment he
needs to help him be his best. I’m so excited that tomorrow we are finally
getting a feeding chair for him in our home, which we’ve pursued for several
months. It will replace a high chair that he outgrew well before that. I’m so
grateful to have resources to meet our needs. A new feeding chair might not
seem like a big deal, but this is a huge victory for our family. Rather than
get discouraged through the process of getting equipment, I need to remember
all the ways our needs have always been met and stay HOPEFUL.
I have more than enough material to draw on to remind me of
God’s blessings in our lives. Just within the last couple weeks, I shared with
another mom my frustrations of having to jump through hoops with insurance to
get something Gage needed and how everything felt like a fight. A few days
later, my perspective was completely changed when she let me know that another
mom friend had a spare item that we could have. The generous soul willing to
share her resources with us gave me a great reminder, saying she knew what it
was like to not be able to get what your child needs, but also how great it is
when God provides.
Another big hope of mine for that year is that Gage will
continue to develop his communication. We are so thrilled to have his own
speaking device, but at times it can seem like an uphill battle in front of us
because of the huge learning curve. Rather than think about all the challenges
that come with figuring it out, I want to just stay HOPEFUL that Gage now has a
way to interact with us.
Instead of hoping for Gage to walk or say spoken words, my focus has shifted, at least for now. But I am far from hopeless. I really struggle with this topic, and especially defining how I feel about it in spoken or written words. I’ve shared before about denial vs. hope and pretty much summed up that post with an acknowledgement that I can’t articulate where I stand. I’ve learned a lot since then, or at least wrestled a lot more with the concept of hope and defining it in the midst of challenging situations. The whole crazy process of being a mom and the journey we’re on keeps different emotions ebbing and flowing all the time. It’s an ongoing cycle.
Rather than try to explain my stance on hope, maybe I can better explain the value having a word of the year has had for me. Last year, my word was peace. Prior to that, I could make a case for love and joy as focus words. Throughout the last year, trying to focus on peace helped me through some challenging situations. It didn’t mean that it was easy or uncomplicated, but the word peace was often a reminder to refocus my thoughts on something positive. Simply choosing the word peace didn’t make me peaceful by default. I wasn’t always calm and was sometimes anxious and worried when things seemed especially hard. But a simple reminder to breathe and focus on peace was helpful in many circumstances, like when Gage’s seizure activity increased this year, or when we seemed to hit roadblocks or tough choices about his care. Peace was my way to combat the fear that too easily wells up inside me.
The reason focusing on peace brings a sense of calm is the source of that peace – a loving God. He always takes care of us and he’s in control, even of messy circumstances that we can’t understand. The same is true for love and joy – God is the source of those good things. And no matter what, I have to keep God as the source for my hope. The examples of things I’m hopeful here this year may be physical items to meet Gage’s needs, but I know I can’t put my hope in things. Ultimately, I should stay hopeful because the God who provides for us and weaves our story together loves my sweet Gage even more than me.
“I pray that God, the source of hope, will fill you completely with you and peace because you trust him. Then you will overflow with confident hope through the power of the Holy Spirit.
Romans 15:13
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11
“Blessed is the man who trusts in the Lord, and whose hope is in the Lord.”
Jeremiah 17:7
“Let your mercy, O Lord, be upon us, just as we hope in you.”
Psalms 33:22
“Hope is one of my favorite emotions because of its humility. It’s not like gladness or joy which stick around just for the good stuff. Hope is my heart’s missionary. It humbly seeks fear and shame and hurt and befriends them. Hope enters the very dustiest parts of my heart, clears out the cobwebs, and whispers of the promise of eternal perfection.”
Today I’m thrilled to share a guest post from Michelle Lewis. Michelle is my second cousin and we grew up in the same small town. Last Friday, Michelle was the speaker at the 20th Annual Tipton Prayer Breakfast. I wanted so badly to attend, but Gage’s therapy schedule and an IEP meeting got in the way. Luckily, Michelle shared video of her speech, so I still had a chance to take in everything she had to say. I’m so glad I did! Her words, which she’s given me permission to share here, are filled with so much wisdom. I had no doubt they would be, as Michelle’s been offering me great advice personally for the past few years. A few months before Gage was born, Michelle became a mom to her daughter Eliana, who you’ll learn more about below. On my journey with Gage, Michelle was one of the very first people to speak to me in a way that made me feel seen and understood. She was truly a lifeline for me during a dark and difficult time in my life. I’ll always be grateful for that. My hope today is that you’ll get as much out of Michelle’s wise words as me. Below is her speech from the Prayer Breakfast, and you can also find the video here.
Thank you for allowing me to speak to you today, it is truly an honor.
While most of you probably know
who I am, I wanted to share a small bit about myself so you can understand just
how spectacularly ordinary my life was. I was born and raised in Tipton. After
high school, I earned my degree from State Fair Community College, then
transferred to Northwest Missouri State University, where I received my
teaching degree. A glutton for punishment, I went back to school a few years
later and earned my Master’s. I have
been a high school social studies teacher in Pleasant Hill, Missouri since
2006. In 2011 I married my husband, Chris, and 2 years later we welcomed our
daughter, Eliana, into the world. At this point you are probably thinking “why
did they ask this lady to speak today”, she seems pretty boring.
Before Eliana, I lived a wonderful life, but admittedly, it was an
ordinary life, one without much purpose. This life I knew vanished on New
Years’ Eve of 2013, when Eliana entered the world as a 4lb 7oz diva. Eliana
would spend the first five months of her life in the Neonatal ICU at Children’s
Mercy Hospital, suffering from uncontrolled epilepsy and other medical
complications. While in the NICU, Eliana would receive a genetic diagnosis of
SCN2A-related Epileptic Encephalopathy. My life had just become EXTRAordinary.
One of the very ordinary things about my life is that I love
quotes. I have inspirational quotes posted throughout my classroom and have
multiple Pinterest boards dedicated solely to quotes. Today I will be sharing
with you several quotes that I have tied to lessons that I have learned
throughout my new, anything-but-ordinary life as a special needs parent.
Lesson 1: Just Keep Going
“We must keep going. And
so, if you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl.
But by all means, keep moving.” –Martin Luther King Jr,
1967 speech at Glenville HS in Cleveland, Ohio
I have never been a fan of winter; every year while in the middle of
another brutal Missouri winter like we are having this year, I question why I
still live here. January of 2014 was no different, it was bitter cold and
unbeknownst to us, the beginning of what would be a 5 month long stay at
Children’s Mercy Hospital. By the end of January, almost a month into our stay,
we still did not have answers to why Eliana was having hundreds of seizures a
day despite multiple anti-epileptic medications and the stress was starting to
get to Chris and I; we began to question how we would ever get through this
seemingly endless and terrifying experience.
On January 21, during my daily vigils at Eliana’s bedside, I happened on
a quote someone had posted on Facebook in honor of Martin Luther King Jr Day.
The quote was from a 1967 speech he gave in Cleveland. Dr King very eloquently
said: “We must keep going. And so, if you can’t fly, run. If you can’t run,
walk. If you can’t walk, crawl. But by all means, keep moving.” I vividly
remember reading this quote and feeling like it was meant just for me; to
encourage me through this difficult time.
Just a few days later, we would receive earth-shattering news: Eliana’s
genetic diagnosis. Even though not much was known about SCN2A at the time, the
prognosis was not good. We were told by a genetic counselor that she would
likely not live to see her second birthday and if she did, her quality of life
would be very poor. Diagnosis Day, sometimes referred to as D-Day in special
needs circles, was the worst day of what would be the longest winter of our
lives.
Since that initial genetic diagnosis, numerous other diagnoses have
followed. One of them being Dysautonomia, which causes Eliana to have an
overactive sympathetic nervous system. If you don’t know, the sympathetic
nervous system is responsible for your “fight or flight” response; this is our
body’s physiological response to stress. For Eliana, when her body encounters
stress, like a tummy ache, her body jumps into “fight” mode and cannot get out
of that mode without medical intervention.
When staring down adversity, much like Eliana’s sympathetic nervous
system, we have two choices: Fight or Flight.
We can run from the threat; try to avoid pain and survive to live
another day. This flight response can prove quite useful when dealing with
temporary threats; like this past summer when I was cleaning out our long
neglected garage and stumbled upon a hive of very protective bees. I choose
that day to run; I got away from the threat as quickly as possible and lived to
clean another day.
Unfortunately, many threats in our lives are not temporary; they are
long-lasting and life-altering and that flight response simply won’t do. The
other choice we can make is to face the threat head-on: to fight. This option,
which opens us up to the possibility of pain and potential injury, also
provides us with the opportunity to weaken or even eliminate the threat. As the poet Robert Frost said “the best way
out is always through.”
I must admit, there were times in the early days of being in the NICU
that I wanted to run from the threat of an uncertain future and daily
life-threatening crises. Many evenings, when we should have been snuggling
Eliana in the comfort of our home, enjoying our newborn baby, we sat in an
empty nursery, crying and grieving the life that we had meticulously planned
for our new family, while our daughter fought for her life in a hospital across
town. Early on, Chris and I made the conscious decision that we must face this
threat head on. That while we might want to run and hide, we must stand and
fight. So every morning, we woke up, got dressed and made the trek across town
to Children’s Mercy to spend the day fighting with Eliana. At this point we
were just crawling (and we crawled for MONTHS), but we were still going, still
moving forward, still fighting.
So, no matter how cold the
winter may be or how terrifying the threat may seem, in the immortal words of
Dory, a small blue fish, “just keep
swimming, just keep swimming”.
Lesson 2: Accept Help
“It takes a village to
raise a child” –African Proverb
While we were slowly moving forward, I quickly realized how isolating
our new journey was going to be. Research has shown that people who have unique
experiences tend to report less positive feelings and a sense of exclusion
compared to those who had shared, ordinary experiences. This is the reality for special needs
families–because our daily lives are so different from a typical family, many
times it is hard for others to relate to us and for us to relate to them. When
you compound this with all the other obstacles we face on a daily basis,
maintaining relationships becomes all the more difficult and the feelings of
isolation start to settle in.
I believe at some point in our lives we all experience a degree of
isolation; a time where we feel detached, like no one could understand what we
are going through. For some that could be as an angsty teen trying to navigate
social groups and find where they fit in. For others the disconnect may come as
an adult trying to cope with an empty nest or the loss of a loved one. I have
discovered that while it may seem like you are alone in your situation, there
is always someone who can empathize, there is always someone willing to help,
you just have to be open to accepting the help when it is presented.
An African proverb says that it takes a village to raise a child. This implies that we can’t do everything ourselves, that we must be willing to accept help. This is not something that comes naturally to me. For the five months Eliana spent in the NICU, I was granted extended leave from work so that I could be with her. While I was fortunate to have an employer that was willing to grant me this leave, it also meant an extended time without pay. Knowing the potential financial burden we were about to experience, my village stepped in to help. I may have been 31 years old, married and living in a different city, but in the eyes of the Tipton community that helped to raise me, I was just a child from their village that needed help. Chris and I were truly humbled by the outpouring of love and support we were shown from this amazing community but it was very difficult to accept this seemingly undeserved kindness.
I think from any early age we all desire independence, like the toddler
who insists they can do everything themselves and the teenager who ignores sage advice from
their parents because they believe they know it all. I was no different; I believed that I should be
able to care for my child and continue in my roles as wife, teacher and coach
without any extra support because that is what mothers are supposed to do.
No matter how much I thought I could do it all, I was quickly shown that
I was wrong. I was immediately denied the chance to do even the most basic tasks
expected of all new mothers like holding, feeding, bathing, even dressing my
child. Because of Eliana’s condition early on, these tasks were carried out by
highly skilled nurses and medical equipment.
I did not get to hold Eliana until she was 3 days old–I have been
making up for those 3 days for the past 5 years.
Not being able to adequately care for my child, made me feel like a
failure, and as our hospital stay went from days, to weeks, to months, I
realized that other roles that I was used to doing were also being challenged.
I had to take an entire semester off from teaching, I would no longer be able
to coach and how could I juggle all this and still be a good wife. So when my
village–the Tipton community, my co-workers, family and friends–started to
offer help, I struggled to accept it, because in my mind accepting help was
showing weakness and was forcing me to acknowledge my own shortcomings.
Shortly after we got home from the NICU, I discovered an online Facebook
Community that was started by a handful of parents whose children suffered from
the same genetic change as Eliana. Earlier I mentioned that research has shown
that people who have unique experiences, like we were having, tend to feel
isolated and have an increase in negative feelings. But conversely, research
also shows that positive feelings can be amplified through shared experiences.
Researchers found that people who shared the act of eating a piece of chocolate
together, with another person, reported enjoying it more than those who ate it
alone.
Discovering my SCN2A Family meant I was no longer eating my chocolate
alone–I was now sharing my experience with people who understood and could
offer me unique support that I couldn’t find anywhere else–my village had
grown. Over the last 5 years, that village has become more like a booming
metropolis, growing exponentially to include countless doctors, nurses,
teachers and therapists who have all helped to fill in the areas were I am
lacking, to make our lives complete.
Through this journey, I have come to the realization that accepting help is not a weakness; it actually takes an immense amount of strength to not only confront your shortcomings but to then allow people to share in your experience. So, whatever you are battling, don’t do it alone. Find your village and eat your chocolate together.
Lesson 3: Let go of expectations
“Comparison is the thief of
joy” –Theodore Roosevelt
Speaking of eating chocolate, when I was pregnant with Eliana, four of
my colleagues were also expecting children, with our due dates landing within 4
months of one another. While some were questioning what was in the water at
Pleasant Hill High School that year, I was busy making plans for Eliana and her
future. Plans were made for her to attend a local babysitter that some of my
colleague’s children would also attend–So in my head, Eliana already had a
group of friends and she hadn’t even arrived yet–I was killin’ it as a parent.
Like all parents, I was just envisioning our future, but in looking ahead, I
was also creating expectations; expectations of what our lives would be like,
who Eliana would become. But to paraphrase the Scottish poet Robert Burns,
…the best laid plans often go awry.
In the five long months we spent in the NICU after Eliana’s birth, in an effort to try and fill the hours while I sat at Eliana’s bedside, I would scroll through social media. As I scrolled through Facebook, weeks after Eliana was born, my first expecting colleague welcomed a healthy baby into the world, then a few weeks after that, another colleague welcomed a healthy child into the world, and this continued until all four of my colleagues had uneventfully welcomed healthy children into the world. This should have been a time filled with great joy, but as I watched my colleagues children grow and reach milestones like cooing and laughing and sitting independently, I was watching Eliana have hundreds of seizures a day and being confronted with the reality that she may never get to go home. I found myself in a very dark, uncomfortable place–a place where my expectations for my daughter and her future weren’t being met and I was unfairly comparing her to these children because of those expectations I had created. Teddy Roosevelt once said that “comparison is the thief of joy”. Without realizing it, comparison was stealing joy from my experience as a new mother; I couldn’t fully appreciate Eliana and our journey because I was too consumed with what we would never have and what she would never be.
When the Bible was originally
translated from Hebrew to Greek, there were four words that were used to
describe the English word “love”. “Eros” to describe romantic love, “Philia” to
describe brotherly love,
“Storge” to describe familial love, and the fourth and most important type of
love,“Agape”. “Agape” is a love that is selfless and sacrificial, a love that
is unconditional. Many equate it to the love Christ had for his Father and for
humankind.
Pope Francis embraces the concept of agape love when he addressed the
issue of giving to the poor. His message was simple: Give to the poor and don’t
worry about it. Many people justify not giving to the poor because they might
squander the money, but Pope Francis argues we should simply give to those in
need and be grateful that we have the ability to do so. This is giving love
unconditionally, without judgement or expectation.
Five years in, I am finally at a point in our journey where I can say
that I am letting go of the unrealistic expectations that I had created for
Eliana, and I am replacing them with open-ended possibilities of what she might
become. By removing those unfair expectations I am now free to love Eliana
unconditionally and this has been transformative for me; I can now find joy in
our experience because I am no longer focused on what she is not and what she
will never be.
So, try not to get caught up in what someone else has or what you don’t;
accept others for who they are, not what you think they should be. Once you
begin to shed those expectations, you to can open yourself up to both give and
receive unconditional, agape love….
Lesson 4: Embrace your
experience
“The wound is the place
where the light enters you” –Rumi, 13th century
Persian poet and scholar
Letting go of expectations is a process; a process that I am still
navigating. There are days that those
expectations creep in and make an unwanted appearance. I think this is part of
the grieving process that every special needs family goes through. Even though Eliana
is still very much alive, the expectations that I had created about who she
would be were never viable, and I find myself on occasion, grieving that child
who never was; like when the genetic counselor shared our bleak prognosis, when
attending “well-child” check-ups at the pediatrician and having to answer “No”
over and over again when asked if Eliana was hitting milestones, or while in
the middle of a 2 week stay in the PICU when I had to sit and watch through a
glass wall for hours as the family across the hall says goodbye to their child
for the last time.
I think experts are wrong when they say that the grieving process comes
in stages. To me this implies that that there is a beginning, middle and end to
grieving. I think a more appropriate term is “waves” of grief. I know for me,
my grieving comes in waves, it is intermittent and unpredictable. Sometimes
these waves are small and fleeting, other times they are large and lingering.
And like waves crashing into rocks along the shore, each time a small bit of
erosion takes place, reshaping my experience.
There are many aspects of our journey that are painful and at times hard
to bear, but I cannot control these things, just like I cannot control when my
grief decides to reappear. But what I can control is how I respond to these
situations.
The English philosopher, George Henry Lewes said “the only cure for grief is action.” I have tried to make this my motto. Four years ago I decided to embrace our experience and try to find some way to pay forward all the kindness that had been shown to our family. We decided to start a yearly golf tournament that would raise funds and awareness for various worthy causes. Three years ago I was approached by the FamilieSCN2A Foundation and asked to become a board member and help them achieve their vision of a finding a cure for SCN2A disorders.
The Eliana’s Force Golf Tournament and my work with the FamilieSCN2A
Foundation are actions that I can control and in my own small way, I can help
others navigate through their hardships, while helping heal the wounds my own
have created. By embracing my experience, I am allowing the waves of grief to
shape me into a better version of myself.
The Persian poet and scholar Rumi said “the wound is the place where the light enters you.” No one can escape grief, pain and hardship; we all experience them on some level, at some point during our lives–we all have wounds. So if these things are inevitable, we must be willing to embrace those experiences, to let the light enter, so that you can transform into something better.
Conclusion
Before Eliana I had a wonderful life, but I now know that it was a life unfulfilled. Eliana and our special needs experience has transformed my life from ordinary to extraordinary; it has shaped me into a better version of myself.
Life has a way of testing us; along with all the happiness and joy, it
also brings pain and hardship. My hope for you is that when you encounter times
of trial, that you remember these 4 lessons:
—No matter how difficult it may seem, just keep going
–Seek out and find your village and accept their help when offered
–Don’t allow unfair expectations to limit your love or squash your joy
–Finally, embrace what you are going through so that you can learn from
it and become a better version of yourself.
Thank You.
Michelle and Eliana are both awesome and inspiring individuals. Michelle mentioned her involvement with the Families SCN2A Foundation. They are working hard to find effective treatments and a cure for SCN2A disorders. If you’d like to support the good work they are doing, you can find all the details on ways to give here.
One of my friends, who’s an avid reader, is also one of the
most thoughtful and kind people I know. As an elementary school teacher, it
must be second nature to her to encourage a love of reading in others. More
than once, after we’ve discussed our favorite children’s stories, a copy of a
book she recommended will anonymously show up in the mail. I was stumped the
first time it happened, thinking my online shopping had really gotten out of
control if I couldn’t even remember what I ordered from Amazon!
I thought back to recent conversations, racking my brain to
try and recall who I had discussed Llama Llama with, when it finally dawned on
me. Turns out, my sweet friend is also raising a sweet and compassionate
daughter, who, after learning we didn’t have our own copy, insisted on getting
it for us.
Another title we’ve received from these thoughtful friends is, “I Love You, Stinky Face.” I hadn’t heard of the book before she mentioned it, and had never read it until we excitedly opened the package from the mail one afternoon when we got home from therapy. I sat down with Gage and to read it right away. We didn’t make it to page 4 before I was tearing up.
If you’re not familiar with the story, it’s about a little
kid getting tucked in at bedtime by his loving mother. She tells him she loves
him, and he presents a variety of “what if” questions, like if he were a super
smelly skunk or giant cyclops. All of this is probably just a bedtime stalling
tactic on the part of the kid (which I’m all too familiar with lately), but the
mother responds to each scenario explaining how she would not only love him,
but take care of him in specific ways to meet his needs, buying an extra-large
toothbrush for an alligator or building a house next to the swamp to be with her
swamp monster always.
I’ll be the first to admit it doesn’t take much to make me emotional, but the reason this book got to me that first time I read it, and still gets to me every time we curl up with it in bed, is how beautifully it portrays the love of a parent for a child. Of course this applies across the board, but I think it hits close to home for me having a child with disabilities. At times, Gage might have terrible breath, or excessive slobber and a soaked bib that doesn’t exactly smell like roses. But there’s nothing about the kid that could make me love him any less. Just like the mom in the story, I’ll try to help resolve some of his issues, but if he still smells bad, I won’t mind. If my shoulder is covered in drool where Gage rests his head when I hold him, or if he continues to be an incredibly messy eater, it will be just fine. I’ll go to great lengths to make him and his little brother understand how loved they are, and I’ll do my best to meet their unique needs. I might draw the line at sewing shredded sheets back together every day though!
