LEO’S LEG – PART 1

For about a year now, we have kept one of the biggest things in our life private. You know I’m a pretty open book and I keep it real on here and on social media. When it comes to my family and situations that extend beyond myself, however, I am private and protective.

Still, I do consider you part of my extended family. Many of you have literally been with me for five and half years. You’ve witnessed the highs in my life like getting married and having a baby. You’ve been there as I grappled over decisions like leaving dental school and the challenges of building a business.

To not let you in on something as big as what I’m about to share has been difficult to be perfectly honest. I’ve hinted for quite awhile that we were dealing with obstacles in our personal life. Anthony and I wanted to wait until it was the right time to share and now we feel it is.

This post is quite long, so thank you for taking the time to read this and support our family.

10 TOES ARE OVERRATED

From the moment we found out we were pregnant, our lives completely changed. I know everyone says that and it seems a bit cliche but we were absolutely over the moon about having a baby, and our lives revolved around it.

As a parent and even as an expecting parent, you’re constantly bouncing between joy and fear. You’re so in love with your baby yet you’re worried about every. little. thing. Hitting the 12 week mark and moving out of the first trimester with a healthy report is very comforting. You finally feel you can shift your focus to fun things like the nursery and the baby shower. That’s exactly what we did.

At 20 weeks, we went in for our anatomy scan. Of course, there is some concern that everything checks out. To be honest, I wasn’t at all worried. Anthony and I were so excited to see every square inch of our little Leo. We had yet to see his face on ultrasounds and I remember telling my mom the night prior, “I so badly hope we get a 4D image of his cute face.”

We were watching our little cutie on the big screen. The sonographer told us, “I scan from the head to the toes. I’ll let you know what I’m seeing.” Everything was looking wonderful. He was joking that based on the measurements, Leo was going to be smart. He was telling us all his organs looked perfect. We were feeling great and almost done. Then, in literally a moment, everything changed.

I remember the sonographer went from joking to serious as he asked me to rotate so that he could get a better image of the right leg and foot. I didn’t think much of it and as he was doing his job, Anthony and I kept smiling at the cute little face ultrasound picture we got! We were already snapping pics of the image and texting it out.

The sonographer was deeply focused on what he was looking at. You could feel there was something off. Anthony asked, “is everything alright?”

…silence…

I remember my heart began racing and my stomach started doing that weird twisting. The mood totally shifted and I remember Anthony repeating in a stern and serious voice: “what is going on? Tell us what you’re seeing.”

“Leo’s lower right leg… it is measuring about a third shorter than the left. His ankle appears to be rotated outward. The foot is small and underdeveloped. And, I’m only seeing two maybe three toes.”

I remember Anthony grasping my hand. I looked at him and his eyes were full of tears. I’ll never forget my first reaction: “it’s okay we’ll fix it.”

I’ll keep the next few moments private; I’m sure you can imagine (or hopefully not) how it went. The one surprising thing… I never shed a tear during that appointment. At one point my husband actually said: “why are you not crying? Did you not hear them?”

I’m sure it was pure shock but I also truly believe it was half strength from up above. The strength I felt that day and the strength I continue to feel is more than I know I am capable of; I believe with all my heart that God helps me through each and every day and in that moment I first felt the immense strength He would provide me.

Our OB had not seen something like this (more words you never want to hear) but thankfully, she got us in with one of Houston’s best maternal fetal medicine specialists that same day.

For the sake of keeping this post from becoming a novel, I will give you the footnotes of what could be a very detailed, long explanation.

Our biggest concern was that Leo’s leg was stemming from a greater problem. After hours with the specialist, she believed this was an isolated physical situation. Every organ, bone, part of the brain, etc. was checked and checked again; Leo appeared healthy and was developing perfectly other than his right leg.

Of course, there was the option of an amniocentesis to further investigate. As I’m sure you’re familiar, amniocentesis come with a risk to the unborn baby. Anthony and I (along with our medical team) decided not to take any further risks to gain knowledge. Nothing would change our love for Leo, so we chose not to proceed with that.

Before every OB visit, Anthony took a bump shot for me to track the belly progress. When I look back at that 20 week progress pic that we took right before the anatomy scan, my stomach still twists. I haven’t put on those leggings since that day. The ultrasound gel was all over them and I still think of that when I see them in my closet. I remember my body shaking uncontrollably through the hours of ultrasounds; at one point, I literally thought, “this cannot be good for the baby.”

sidenote- this post has taken me a few days to write and I’m proud to report I’m currently wearing those leggings

I’ve never made a more a difficult phone call than calling my parents and Anthony’s parents, saying “something is abnormal with the baby.”

Tears still stream down my face recalling this moment… at the end of that very long appointment, Anthony looked at the doctor and in the most emotional voice, asked “does it hurt him?”

At that point, it all hit me. I realized how little any of this was about us/how we felt and all about our precious Leo and his health.

“YOU’RE SHATTERED LIKE YOU’VE NEVER BEEN BEFORE..”

So, what do you do after a day like that?!

Finding out about Leo’s leg was difficult to say the least. In one sense, you feel immense gratitude that he is healthy. On the other hand, you’re grieving and letting go of the life you thought he was going to lead. It’s incredibly weird for lack of better words. The emotions weren’t and aren’t like anything I’ve ever felt.

The day after the anatomy scan, Anthony played me a song… it’s called “Tell Your Heart to Beat Again” by Danny Gokey and there is a part  in it that I feel really captures the days after learning about Leo’s leg.

“Your shattered like you’ve never been before.

The life you knew in a thousand pieces on the floor.

And, words fall short in times like these

when this world drives you to your knees.

You think you’re never going to get back

to the you that used to be”

I’ll try to share a few of the many, many emotions…

HEARTBROKEN

Of course, first and foremost, your heart breaks for your baby. Life is tough and the last thing you want is for your baby to have any challenges working against him. So often we jumped to: “it could be worse” and while we were so thankful it wasn’t appearing to be worse, it still left us brokenhearted for our baby.

ALONE + WORDS DON’T HELP

You feel alone. We all have struggles and challenges. We all feel pain. But, when you’re in that place and the pain is raw, you feel no one can relate to you. No words that anyone could say to me would help alleviate the pain.

That first week, I hated being alone because my mind would wander. I remember I was home alone one day, walkinging down my stairs. I thought about how you take for granted walking down the stairs but that is not something the little boy in my belly will just be able to do like everyone else. When I got to the bottom step, I sat down & remember crying so hard that I couldn’t catch my breath. I don’t think – in my entire life – I’ve ever cried so hard.

LOVE

Our family and close friends were unbelievable. I don’t think I’ve ever felt so supported and loved. When they say it takes a village to raise a child, they don’t just mean for the baby!

YOU CHANGE. FOREVER.

My best friend, Liz was one of my biggest rocks. We had long talks but she would text me around the clock just to let me know she was there and continued to remind me of how strong I was. I remember waking up one morning. Mornings were very difficult- I would open my eyes, smile and then reality would hit me like a brick wall.

I reached over to my phone one morning and saw a text from Liz and I recall writing back “when will I feel like myself again. In that Danny Gokey song, he sings “you think you’re never going to get back to the you that used to be.”

And, I’ve learned… you don’t. I’m not who I used to be. Being a mom to a child who has an extra need changes you. I’ve learned to embrace it and in many ways, I’m thankful for it.

P E R S P E C T I V E

You see Anthony’s funny side a lot but very few people know his entire being. He’s incredibly insightful and wise. He doesn’t talk about “deep stuff” much but when he does, his thoughts always amaze me.

The week after we found out about Leo’s leg, we felt our feelings. We had very difficult days. I don’t really feel I have to touch more on that other than to share that there were very dark times.

There was a moment maybe 4 or 5 days after that anatomy scan that Anthony and I were hugging. He looked at me and said, “I’ve really been thinking about this. Let’s do whatever we have to do to get all the tears out. Then, let’s get back to being the happy, excited parents we are. Of course, we can chat and cry if we need from time to time but let’s focus on all the good.”

Everyone handles challenges differently but this is 110% Anthony and I.

From that moment on, we decided we were not going to let this define Leo’s pregnancy or Leo’s life.

That set the stage for everything. It’s why we decided not to share with many people. It’s why I kept this all from you. It was the only way we could remain focused on Leo and all the blessings surrounding him.

It’s quite amazing when you’re focused on looking for the good just how much good you really see.

IN MANY WAYS, THIS IS THE BEST THING THAT EVER HAPPENED TO US

That sounds not right, I know. Allow me to explain. I often hear people who overcome obstacles say “it was actually the best thing that ever happened to me.”

I always wanted to be able to say that and today, I truly feel I can.

Don’t get me wrong… I would give my leg to not have my son face this challenge. Of course, I don’t want this for him. But, I don’t spend my days wishing this was different.

Over Memorial Day weekend (just a few weeks before Leo’s due date), I was at a party and someone asked me, “are you worried you’re not going to be sleeping much?!” I don’t remember what I really said but what I was thinking was yes that’s going to suck but my greater concern is Leo, his health and his leg (there was still so much unknown that we had to wait until he was born to be tested and imaged).

As a new mom, there are so many struggles: sleep deprivation, just feeling off from changing hormones, having no time to yourself, feeling guilty about doing this or not doing that. All of that and more, I felt.

It’s just that when I was tired and not feeling well and my house was a mess, I would be feeding  Leo and touch just two precious toes on a tiny foot. All that stuff just didn’t matter as much. My perspective on life has completely changed.

I really believe I am a better person and a better parent because of this. It’s made my life better in so many ways.

Now, my greatest hope is that someday Leo will be able to say the same.

FIBULAR HEMEMILIA

After Leo was born, we saw several specialists. Leo’s formal diagnosis is fibular hemimelia. This really varies individual to individual but in Leo’s case, he was born without a fibula. This causes a limb discrepancy (the right leg being shorter) as well as foot and toes that I’m going to describe as uniquely Leo… his right foot is small and points outward and he has 2 toes on that foot.

Fibular hemimelia is very rare. In fact, less than 100 children in America each year are born with this. Of those 100 children, each case is very different.

Another reason we chose not to share until now is because Leo’s path involves us, his parents making very difficult decisions.

Leo can undergo a series of 4-6 very intense reconstructive and limb lengthening surgeries over 16 years. Each limb lengthening surgery is about 1 year of recovery. For 6 months, the child remains in a wheelchair, leg immobilized with a structure around the leg so the device can be “cranked” to promote the lengthening.

The other option is amputation and a prosthetic.

Anthony and I have an idea about what is best for Leo and his situation but we continue to see how things develop.

Right now, Leo is perfectly healthy. And in my opinion, the happiest, darn cutest baby.

He spends more of his awake time smiling than anything else. He says “ohh” and “ahhh” with pure joy and excitement all throughout the day. He could jump in his jumper all day if we let him. He’s just perfect to us.

LEO’S JOURNEY

As Leo’s parents, we recognize we are in a very unique situation for many reasons. First and foremost, we live in a digital world where everything Anthony and I share, Leo will one day be able to see. While learning the news of Leo’s leg was difficult, we chose to not to highlight that but instead, focus on and share the good and the happy.

Never, ever will I allow Leo to feel that he has caused us pain. As he gets older and eventually becomes a parent, he will understand and we can have those conversations. However, I choose not to discuss the day to day struggles we face in order to protect him.

Further, I have a platform and choose to share my life publicly, but this is Leo’s story. We don’t yet know how much we will choose to share and how much we will choose to keep private.

TO MY LITTLE BIG, STRONG LEO

I thank God every day that He chose me to be your mommy. We have an understanding and love that I could only have dreamed of. In a matter of months, you’ve taught me more than I’ve learned in my lifetime and I only hope that I can do the same for you.

Here is just one thing I will try to remind you of for the rest of your life. Leo, you were born different and that is what I love most about you. Being different is cool!

This world will try to force you to fit in, Leo. It will try to tell you what is cool and what you should and shouldn’t do. Most people will spend their lives living by those standards.

My love, I hope you always stay different. I hope you continue to smile like you always have when the world gives you a million reasons not to. Whether it’s at your toy dump truck or at your dreams, I hope you continue to dive fearlessly toward what you want even if the rest of the world goes in another direction. Leo… when the rest of the world is trying to fit in, be you. Be different.

More than anything else, Leo… never forgot how much your daddy and I love you. You make me so proud to be your mom!

Love,

Mama

THANK YOU FOR THE LOVE & SUPPORT I KNOW YOU WILL SHARE

If we could ask you for just one thing it would be understanding. There will be times that what appears on social media is a bit different from my reality. If what I share makes my life appear too good or as though I have it all together, please just know that I have struggles and pains just like anybody else. For the best interest of our son, we are choosing not to share all of it. My obstacles may look different than yours but the feeling of difficulty is the same and something that unites all of us.

We have an amazing medical team working with Leo and as much as I’m sure others can help, we ask that all medical comments, advice, insight, etc. be kept to yourself. In sharing about Leo, we are not looking for information or assistance.

Thank you so much for the love and support you’ve always shown me and my family. Words cannot express how grateful I am for that and for you… now more than ever!

To circle back to Danny Gokey’s song, I’ll leave with one thought I carry with me daily…

“In this moment heavens working. Everything for your good”

 

Photo Credit: Jennifer Mathews Photography

You Might Also Like

No Comments

Leave a Reply