A Hard Walk

Words can’t begin to explain my thoughts and fears on bringing Easton into this world. A world that I fear is going to have complications far beyond what his little body is expecting. It’s overwhelming. Daunting. Scary. And yet, I am still able to find some excitement. Stephen and I have dreamed and prayed about starting a family of our own for years, and in a few short weeks, less than three to be exact, we’re going to meet our son. I think know that keeps me going; getting to see this baby that I’ve bonded with over the past nine months. The little stinker who continues to be breech, loves to nestle his head up in my ribs, and makes me take more trips to the bathroom is going to be here in a matter or days or weeks.

Today we talked with a NICU doctor and then we did what no parent wants to do—toured the CVICU (cardiovascular intensive care unit). There are no words to express the pain and heartache of knowing that your precious newborn baby will be whisked away and join the ranks of the other heart warrior babies who are fighting for their lives. Nothing can prepare you for walking through a room filled with beeping machines, chords and wires everywhere, doctors, nurses, and seeing little bitty babies not being able to be held because they are being kept alive by the very chords and wires that hold them down. The very babies and parents in that room are real people experiencing real pain; a pain that I can’t fully describe because my precious little boy isn’t here yet. I know the moms and dads in that room looked at Stephen and myself, even though I tried to hide behind my husband, and probably hurt for us—novices just not aware of the full gravity of the journey that lies ahead of us.

Leaving the hospital, I was quiet, as I’m sure seeing and experiencing what we did today would leave many of you speechless. I was overwhelmed with all of it. So many of you have done such a good job checking in on us and are always asking how I’m doing, and almost all days I’m doing well because if I think about the entire situation and the sheer uncertainty of it all, it’s too much to process. Today was one of those days that as we were in the car, I told Stephen it’s hard for me to wrap my mind around the concept that there’s something wrong with Easton. To me, he’s your typical stubborn little boy who like to kick, wake me up in the middle of the night, causes me back/rib pain, and makes me lose feeling in my hands. To see the babies and even kids in the CVICU fighting for the lives, makes Easton’s heart condition all to very real. He really is and has to be our little red ninja. He has to be a fighter and ninja strong. To all of you who are praying for and rooting for our little red ninja, just know that we need every ounce of it moving forward.

A New Way to Show Your Support

So we have two really cool opportunities for you to support our Little Red Ninja. Two different t-shirt designs have been made for Easton and we invite you to order one or both:) Both T-shirt designs have a time limit, so if you are interested, please order soon!

The shirt on the left hand side of the screen, features a front and back logo and message created by my little sister, Emily England. You'll notice this image has been reoccurring throughout many of my blog posts. The website for this shirt design is: https://www.booster.com/healing-eastons-heart

The shirt on the right hand side of the screen was created by our community group and designed by David Hemphill. The website for this t-shirt design is: http://teespring.com/the-little-red-ninja

We are honored that our friends and family continue to show support for Easton.

Hope

As I sat looking at stacks and piles of clothes and other necessities for Houston, I felt totally overwhelmed by it all, but I had a sense of peace. That peace was rooted in hope. In such a busy season of life, with so many unknowns, I felt a sense of hope packing for Houston. What for weeks had seemed to be this daunting task (don’t get me wrong, it still was) that I kept trying to push to the back burner, on the day before it was my time to go to Houston, I felt hopeful. To some of you, that might not be a big deal, but for me, it was monumental.

We found out about Easton’s heterotaxy and complex heart condition at 21 weeks and honestly were just unaware of how severe it all was. We knew it wasn’t good and were given a hopeful diagnosis at first, but seemed to back-peddle there as the weeks progressed. About three weeks after his diagnosis and multiple doctor appointments, I received a call from one of our doctors with some of the most gut-wrenching news that would make any parent fall to their knees. The doctor called to tell us that it was the last chance to abort the baby. A baby that we already loved, cared for, and who already had a name and a place in our hearts forever. We were in the car and I made Stephen pull over in a random parking lot as a sobbed at the lack of hope that there was from the medical community. They just couldn’t commit to saving our son and to give him a fighting chance at such a big life. I will never forget that phone call, the sound of the doctors voice as she told me what a hard and difficult life Easton had ahead of himself, and that she wasn’t sure if he would/could make it. From that night on, we knew that our only option was to continue to trust the Lord…to know that he is He is our hope, our supplier, and in Him we trust all things.

Well praise God for his sufficiency and placing people in our path who love us enough to push us to fight back for the best care for our son. And not but a week a half later, we were headed to Houston for what we thought was just a second opinion. When we left Houston, we just knew it. We knew that the physicians, doctors, nurses, sonographers, radiologist, cardiologist, surgeons at Texas Children’s were committed to providing Easton with top notch care and to do everything in their power to give our son a chance to live. A chance to live…doesn’t that inspire you to be thankful for your life and health? Doesn’t that give you hope, something to fight for. For us, we are so incredibly thankful for the people who are hopeful that their creative minds, tools, and technology can give Easton a fighting hope to live a his life.

As I was looking around at all the clothes, bags, and baby stuff that we had to shove in the back of my car and I felt hopeful. My heart couldn’t help but hurt for the moms and dads who receive the news that their sweet babes don’t have a chance for life; women who carry babies to half or full term knowing that their child is not going to survive. Those are the true heroes and warriors. Even looking around at all that crap that had to be packed up, the Lord instilled a sense of hope into my tired pregnant body and mind. A hope that I could get to bring home my son and get to embrace all the ins and outs of motherhood.

Not but a few minutes later, Stephen walked in as I filled bags to the brim and squeezed zippers shut, and asked him if we knew that THIS was the path before us (before we even got pregnant), if he would do it again. And his answer was simple and in harmony with the same thoughts I had had not but a few minutes later, “Yes, as long as Easton was given a chance. A hope at life.” It sends chills down my spine even as a type it because it’s just a reminder of how the Lord has continued to allow us to walk through this trench together as a couple and has kept us on the same page.

I recently got a sweet card from one of my students and the mom wrote me a note that sent tears down my face. What the note so beautifully said was that she knew that I had always dreamed of being a mom, even as a little girl, but never in a million years would this path been the one I was dreaming of. And she’s right—it’s not. But what it said after that was that this is the Lord’s perfect plan for my life—this is what He had for me and that I should take comfort and joy in that He is my hope, my supplier, and in Him I should look and trust in all things.

I end this blog only to say, that on Monday we met with the cardiology team at TCH and you know what, the entire team is so perplexed and intrigued by our little man and all of the unique qualities of his heart, they wait expectantly on his arrival. Even the medical students/fellows that have been working so closely on our case are excited to see what becomes of Easton’s heart and want it to happen before they graduate. To me, that gives me the ability and strength to reflect back on that night in the parking lot and the doctor on the phone who said “last chance,” and it instills in me a thankful and hopeful heart that the Lord has a greater plan and has been at work as He continues to form and grow Easton into the true masterpiece that He has designed him to be.

So Many Questions

To say that I've had a lack of words to share is not true, but what I seem to lack is time. For some reason, ever since we got back from Houston, really ever since we found out about Easton's heart conditions, life has been nonstop. Our weekly schedules are filled with work obligations, doctor’s appointments, and more. There are some days that I literally have to make a list of people to text back because the day gets so busy and pregnancy brain is real! Needless to say, Stephen and I are in desperate need of rest and rejuvenation. For those of you who have kids, you’re probably laughing because once said baby arrives, there is little to NO rest.

           In this season of business and with all of the unknowns, cue in a tired and weary mind. We all know that when we're worn down is when fear and anxiety quickly seep in rule your thoughts. Well, I am no different. I was recently sharing with my one of best friends, my thoughts and fears about having this baby. On a daily basis I get bombarded with a million questions, to the point I'm thinking about making shirts that say, "I don't know." Honestly, I don't know much of anything other than I have fears and I am scared. I don't always see fear as a crippling device but rather as something to propel me onward. I see fear as one side of the seesaw but on the other side I see hope. Every day is a balancing act. When I'm afraid about the birth of my son, I think about the hope of him being healed.

The absolute hardest question that I get all the time (because apparently I look like a whale (with potentially another 6 weeks to go) is, "Oh, I bet you're getting so excited! Aren't you?" And truthfully, I’m not. It's selfish of me and I'll explain why. Every day I get to experience the kicks, jabs, and body limbs in my ribs of this sweet little peanut; Easton is very alive in me (even as I write, he is making his presence known). However, the moment that he is born, and the cord is cut, there are no assurances. I can't supply him with life anymore. He will no longer depend on me. I have to let go and trust. As a mom, it makes me sad to think that I'm going to be completely helpless as we watch health care workers, cardiologists, and surgeons try to save our little man's life. Even as the time to his birthday approaches, we still put our hope in the Lord. We put our hope in Him not that he would miraculous heal him (although it is on the prayer list), but that He would continue to lead us, strengthen us, encourage us, and prepare our hearts for His greater plan. So much of the journey to pregnancy and even now, I’ve learned and still am learning to not put my hope in a particular outcome. God shouldn’t have to work around my expectations for how I think the plan should be designed. Obviously, this is not the path I had envisioned for Stephen or myself. Having a baby with rare forms of heart disease was nowhere on my radar, but it’s the Lord’s perfect plan for our lives. I don’t understand it and doubt I ever will, but I take comfort in that He has already gone before us and paved this path. Regardless of the outcome, I pray that my faith is strong enough to say that God is still good, that He knows and loves me.
          

I'm strong enough to know and willingly admit my weaknesses. There are SO many days when I think I'm not strong enough to walk this journey, but this is when I’m challenged to lean on the Lord and I am so encouraged by many of you. Receiving sweet phone calls and text messages, cards, hugs, gifts, etc, all of these are tangible ways in which the Lord is constantly reminded me of how he has surrounded us with such an army of supporters who are helping bear our burdens.