The Weight I Carry

90% of the time I’m pretty happy. I’m proud of my path, I’m proud to be a rarity, but there’s the other 10% that can crush my soul. It’s the weight of a special needs parent. Sometimes I find myself whisked away in thought, usually at night when I’m alone with my thoughts and they easily wander. These thoughts escape the boundaries I set up for myself that keep me from straying. I either go to the past, to 2016, or I start drowning in the what ifs of the future, the future that is so unknown. It’s a weight I carry. A weight to not go “there”. A weight to keep it together and not let them see me struggle. The weight that comes from a diagnosis.

Most days I hold the weight high and use all of my strength to not let it drop, but some days and moments it crushes me. This weight has made me stronger than I could have ever known yet weaker than I ever thought possible. It builds me up and shatters me at the same time. It gives me breath and takes it away. It refines my character and gives me resolve but can send me to the darkest places of human emotion. It’s a weight I carry. It’s a weight I bear on my shoulders every moment of every day, one that I did not choose, but it is forever mine to hold. It’s the weight of a special needs mama.

My One Word

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It’s 2018, can you believe it?  It seems like 2017 both flew by and moved at a snail’s pace.  It was full of ups, downs, accomplishments, learning experiences, and growth.  Typically, come January 1, people sit down to make a list of New Year’s resolutions.  I’m never good at lofty, obscure goals like “I’m going to eat healthier”.  Am I really going to give up dessert and french fries?  For reals, probably not.  However, I do believe that a new year is a great time to reevaluate your priorities, to inspire change, and to be introspective.  What went well in 2017?  What do I want to change?  How can I be better?  What am I looking forward to?

Instead of setting resolutions or goals, I came across the idea of “My One Word”.  I have seen pastors do this and, this year, my boss encouraged us to do it.  You choose one word that will guide your next year.  It’s one word that inspires you, that promotes change, and that will serve as your theme for the next 365 days.  We actually did a lesson with all of our students and encouraged them to pick their one word, so I thought I should probably be a good counselor and participate.  I was sitting in my office thinking about what could my one word be.  It seemed like such a daunting task…one word for a whole year, but my life is so complicated, I thought.  Then a word came to me.  I believe Jesus spoke this word into my life and it just clicked.

My one word for 2018 is EMBRACE.  Embrace: to accept or support willingly or enthusiastically.  It’s a perfect fit.  With a new baby on the way, I’m going to embrace change and embrace life with two littles.  I want to embrace the journey given to us with Cri du Chat.  I want to embrace accomplishments and failures, adventures, and whatever else life throws at us.  I’m going to embrace myself and incorporate self-care back into my routine.  I want to embrace others and be a supportive wife, mother, daughter, sister, and friend.  I want to embrace life and live it fully this year.  Embrace- my one word for 2018.

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I would love it if you would join me.

To choose your word, think about the following questions: (adapted from Jon Gordon)

  • What do I need in my life?
  • What do I hope to achieve this year?
  • What’s in my way?
  • What needs to go?

While there are many good words, there is one word that best fits what you need at this time and over the course of the next year.

  • Does one word seem to come up over and over again?
  • Write down your One Word.
  • Think about how it makes you feel. Does it excite you? Does it motivate you? Does it fit your personality?

Once you find your one word, it’s time to live it out.

  • Keep your One Word front and center. Post it in your home somewhere you will frequently see it.
  • Share your One Word with a friend or someone who will support you.  Accountability and frequent reminders are important.

What’s your one word?  I would love to hear it!!!

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Between Hope & Reality

Tightrope walking has always been fascinating to me.  It’s that stomach-turning, thrill seeking thing that you can’t take your eyes off of.  It is nerve-wracking, but fascinating.  We’ve all seen the circus performers walking high above the crowd, the dare devils walking across the Grand Canyon or between two skyscrapers.  Crazy right?  Think about it, there is a person balancing on the smallest wire, walking from one point to the other, usually at great heights.  The walker must stay perfectly balanced, straight in the middle, because death or serious injury looms on either side.  There is no margin for error.  The smallest waiver could have the largest consequence.

In this life, I’m walking a tightrope.  Hope shines on one side and reality stands on the other.  Do you ever feel like the smallest move could create a huge wave in your life?  I think you can apply this to any of life’s big situations, but for me, it represents my life as a mom to a child with special needs.

On one hand, I want to dive into hope.  I fully have hope that Graham will walk.  I hope that he will be verbal or at least be able to communicate effectively.  I hope that he will make friends and that people will accept him for who he is.  I hope that people will be blessed and inspired by our story.  Hope is a powerful thing.  It helps us move forward in the midst of difficult situations and gives us something to hold on to.  But, hope can also be misleading.  It can fake you out, in a sense, and cause you to avoid reality.

Reality lies on the other side of this tightrope I’m walking.  Reality is, Graham has a very rare condition that affects physical and cognitive abilities.  Reality says that his chromosomal deletion is significant and some say that is a sign of what’s to come.  Reality says that I am unqualified for this position.  Reality grounds us and forces us to make tough decisions, which is not always a bad thing.  Reality makes us learn more and seek to find the facts.  Reality can smack you in the face, whether good or bad.

If you stay too far left in hope or lean too far into reality you will fall.  I must stay perfectly balanced.  I need the perfect portion of hope and reality.  I must remain hopeful  or I will fall victim to depression.  I must stay realistic to be able to provide for my son’s needs and to not land in denial.  Thankfully, I don’t have to maintain that balance myself because I would fall.  As I walk this tightrope of life I’m learning some tips to stay the course.  Life is a tightrope walk- you have to stay balanced, rely on your supports, keep your head up to see the goal ahead, and lean a little, but never fall.

What is your tightrope?  What lies on either side?  How do you stay balanced?

Graham’s First Birthday

I fully realize that this is waaaaay late, BUT I just had to document bubba’s first birthday party.  It was an awesome day celebrating our little boy.  Our house was filled to the brim with love and happiness. We had one hell of a first year with our little guy, but his first birthday was all joy.  It’s just a reminder that you can make it through your darkest days when you have friends and family by your side.  We are so thankful for everyone who showed up not only for his birthday party, but on every other day throughout the year when we needed it.  So here are the deets…

It’s no secret that I love to plan parties and his birthday was one of our best yet.  The theme was Graham Central Station (how cute is that?) and our house was turned into a train station complete with a train photo booth, railroad tracks, fueling station, and a dining car.  Seriously, Pinterest for the win.  In lieu of birthday gifts we asked everyone to bring a donation for one of our favorite organizations, Bright Blessings.  They provide birthday parties and presents for homeless children.  Graham was able to make a large donation in honor of his birthday.  Happy first birthday Grahambo!!

 

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Graham’s Story

img_3374I sit here, fingers on the keys, thinking about how to start this post.  How do I tell Graham’s story?  How do I explain the last eleven months of my life in a single post?  How do I articulately and thoroughly explain the emotional storm we have experienced?  I decided that this post doesn’t have to be the most beautifully written piece.  It just needs to be written.  His story needs to be told, so I decided just to write and just say it.

I am the mom to a child with special needs.  Graham has special needs, a disability, a rare chromosomal abnormality.  Technically, Graham has Cri-du-Chat Syndrome or 5P-.  There was a deletion on the short arm of his fifth chromosome.  He has special needs.

How did we get here?  We got here by fighting, by pursuing, and by being his parents.  On March 17, 2016 our lives changed forever as our first child entered the world at 5:55 AM.  I whispered to Brandon, as I held him for the first time, “he’s perfect”.  As the days and months went on, I noticed things weren’t going as they should.  Graham wasn’t meeting milestones.  He was behind.  We went to doctors and specialists and no answers.  We held onto hope that he was “just a little behind”  and that he would catch up.  You read stories all the time about kids catching up, but the trend continued.  We enrolled him in physical therapy and feeding therapy and saw major improvements, but still not where he should be.  On top of it all, I was secretly battling postpartum depression and anxiety.  Not a good combination.  We didn’t let the world know that we were struggling and how badly we were hurting.  We kept on searching for answers.

Finally, on September 23 Graham had an MRI on his brain.  The pediatrician called and said that everything looked fine, no abnormalities, and the hope surged.  Then, about 20 minutes later he called back after speaking with the neurologist, and said that Graham’s brain was smaller than average.  It was structurally normal, but small.  I fell apart.  My hope was gone.  We were back to the unknown, the unexplained.  She assured us that this didn’t mean he had a disability and that his brain could continue to grow and, again, catch up.  She referred us for genetic and metabolic testing to rule out other things, so I took my baby and watched and held him as several tubes of blood were taken and he screamed.  I cried and he screamed.  I watched as he sat with a bag on him to collect a urine sample.  I’m supposed to be enjoying my baby and seeing him grow.  Instead, there I sat in the doctor’s office again.  So, off went the blood and the urine and up went the prayers.  Begging God to bring normal results.

On October 7, 2016 I experienced the worst day of my life.  God did not bring normal results.  Graham now had a diagnosis- Cri du Chat Syndrome.  Only 50-60 babies are born with this each year in the US and it happened to us.  It happened to Graham.  The thing I feared most in the world became my reality and all of the sudden those words rang in my ear “he’s perfect”.  Someone was telling me that he isn’t perfect; he’s missing a piece of him.  A piece of his little body was “terminally deleted”.  Those words pierce and sting and burn.  My world collapsed and I fell to the floor, shattered.  I’ve never felt despair like I did that night.  I’ve never felt emotion like that and didn’t even know you could feel that devastated.  I ran and wanted to leave forever.  The only word strong enough is shattered and that doesn’t even do the trick.  I can’t even share the details of that night because they are too painful.  I told myself that I couldn’t do it.  I can’t be a mom to a baby with a disability.

“I don’t deserve this”, I thought as we visited the neurologist, the geneticist, the ENT, the cardiologist, the physical therapist, the speech therapist, and the list continues.  Then the day came and a switch flipped.  I vividly remember walking out of the neurologist’s office with my husband and we had a long conversation.  Then and there we decided that there is a calling in this.  There is purpose; we just have to find it.  We have to choose joy.  That was the moment I chose to be Graham’s mom, regardless of diagnosis.  I embraced the path I was given.

I sit here four months later and we are doing it.  We didn’t deserve this diagnosis, but Graham deserves us.  He deserves the best life we can give him.  He is already beating the odds.  He is the sweetest and happiest little boy.  He is our fighter.  He inspires us every day to be better, to advocate, to defend, to ask for help when we need it, and to love unconditionally.  He is going to change the world and his inspiration has already become apparent through him and through us.  This is just the beginning.

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The Thief of Joy

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“Comparison is the thief of joy”  We’ve all seen this quote on Pinterest or elsewhere on social media.  Many times I just breeze by these memes and discount their accuracy, but lately this one has been humming in my ear.  As a new mom, wife, friend, daughter, woman I find myself constantly comparing myself to other women.  It is one of my major flaws and I need Jesus to work on me.

Recently, I have found myself looking at social media posts and comparing not only myself but my baby to other little ones.  Is he developing appropriately?  Is he meeting his milestones on time?  What if he doesn’t?  But, that little one is doing this and whoa that mom, wow she is so put together and has the most hip instagram photos (as I sit here with my hair in a bun, still in my pajamas and I haven’t put on makeup in a week).  How does she do it?  How can I get my baby on track?  The thoughts stream and snowball and I find myself losing my joy in an instant.

It hasn’t been an easy road for me and my new baby.  We’ve had eating challenges, reflux, sleep issues, and on top of all of that he is tiny, which exacerbates it all.  I find myself wallowing in the mundane of each day as I care for my son and I turn to social media.  Bad idea.  The little bit of joy I can muster gets sucked away and instead of enjoying mothering my little boy I get sucked into the image of those “perfect” women and “perfect” babies on social media and my focus shifts.

Then, in that quiet moment, the Lord whispers a sweet truth in my ear.  “You are set apart.  I have chosen you to be Graham’s mom.  No one else can be the mom he needs.  You are fearfully and wonderfully made.  You are made in my image and not the image of other women portrayed online.”  What a freeing truth!  It is a daily battle and God is continuing to remind me each moment of these truths.  I pray that this will speak to some other women out there struggling with this because I know I’m not the only one.  We need to put on the armor of God and fight against comparison.  We must protect the joy that the Lord has placed in our hearts because without Jesus joy is impossible, especially in difficult seasons.  Thank you Jesus for the joy only you can provide and your willingness to accept me just as I am, flaws and all.

Take Care

blogBeing a counselor, I have learned the importance of self-care.  When you are constantly caring for the needs of others it is easy to become drained or to feel depleted.  As a wife and mom, self-care is also an important element of living a holistically healthy life.  Sometimes, it feels impossible to carve out time to take care of yourself.  It can feel selfish or unwarranted, but I have found that when I skip taking care of myself then I cannot fully take care of my family.  When I do not fill myself up with something enjoyable then I cannot pour out to those around me.  I don’t know about you, but when I don’t take time to replenish I become sad, cranky, and resentful.  For me, there are a few things that help me fill back up.

  1. Work it Out!– Working out is a big part of my stress relief.  Every Monday night, I go to zumba class.  I make it part of my weekly schedule and it has almost become a non-negotiable in my life.  If I need to call in the grandparents to babysit, I do.  If I need my husband to take the baby for that hour he does.  When I go to zumba, I come out feeling refreshed, sexy, healthy, and happy.  It is essential to my self-care recipe.
  2.  Challenge yourself!– Running is another important piece of my self-care routine.  I was not able to run the last few months of my pregnancy because, let’s be honest, carrying around an extra 20 pounds does not make running an easy task.  I just recently got started running again and I am thrilled to be back at it.  I love putting on my music (loud) and taking off.  I love the challenge of beating my time or adding an extra half mile.  I’m currently training for a half-marathon and love that it helps keep me on track with my self-care and crossing off an item on my bucket list.
  3. Get social!– Being social and surrounding myself with people and pouring into relationships with others is crucial for me to feel whole.  Whether that means sending a text to a friend or scheduling time to hang out.  Nurturing my friendships helps me remember that I am more than just a mom and wife.  It is so crucial to surround yourself with a community of friends and strong women that encourage you and pour into you.  Over the last six years, God has brought me into a strong circle of friends after a time when I was alone and lost in that area and I am amazed at His faithfulness and provision.
  4. Indulge a little!– And here it is, the guilty pleasure piece of my self-care regimen.  I LOVE reality TV.  I am completely stoked that The Bachelorette is only two weeks away.  Can I get an amen, sister?  We even run  a Bachelorette bracket.  Nothing wrong with a little friendly competition, right? Taking time to indulge in some junky television helps me laugh and unwind.  I love slipping away from the every day mundane and watching the train wrecks that are portrayed in these shows.  Maybe my life isn’t so stressful after all!

What is your self-care routine?  What fills you up?  Do you take time for yourself even when it feels impossible?  I encourage you to find those things that make you happy.  It could be anything and no two people have the exact same needs.  For me, this is a critical part of my life and even more important now that I have a little one who constantly needs my attention.  Remember, self-care is not selfish.  It is necessary to the survival of yourself and those who you care for.  I would love to hear how you take care of yourself!