Finally, the LAST day of February

            When I think about the month of February, it has been an emotional roller coaster, unfortunately, with way too many lows than highs. It’s been a little over three weeks since we learned about Easton’s heart defects, but just this past week, we’ve learned about the potential severity of his particular defects coupled with the fact that he has a left-side heterotaxy. Doctors seemingly reassure us that his heart disease was not as result of anything we did or didn’t do, he just has it. I know that God fearfully and wonderfully made Easton just how He had intended him to be, but it doesn’t make the coping process alleviate the pain.

I recently told someone that I understand grief differently now. I was always the one who didn’t know what to say, so better say nothing at all, right? Or be praying for that person, but never offer up that I was praying. I’ve learned in this grieving process that the most encouraging words have come from those who have not been silent in letting us know that they love us and care for us. I even love the messages that say, “I don’t know what to say but I love you and am praying for you.” I’ve learned that by saying nothing in times of grief, reminds me of the song, “This Little Light of Mine.” In the song, one of the verses is, “…hide it under a bushel…NO…I’m going to let it shine…Let it shine, let it shine, let it shine,” and by me not publicly sharing and helping carry burdens for friends and family, robs them of the pure joy that I simply love and care about them amidst their strife. When I see a co-worker walking up to me with arms wide open, or getting an encouraging word sent via text, or see a new notification on Facebook, it honestly reignites the fire in my soul that I can keep going. I can continue to walk this scary and unknown path with the help of others. It’s been utterly amazing to see how God continues to provide me (us) with joy and encouragement along this path and most of them are such simple gestures. Grief has changed us, for the better.

Do I wish that the situation were different? Absolutely. 100%. But I am growing and being stretched in unforeseeable ways that could only be accomplished through this process. I love that Easton’s life has already been used to bring glory to God and as his parents, we so deeply desire for Easton to continue to touch the lives of those around us. We WANT that happen with him here on this Earth, obviously, but Stephen and I are aware that Easton is a gift from the Lord, not ours, but His.

Today wouldn’t have been an epic closing of February without a trip to the hospital to check on our sweet boy, who the staff said looked and sounded like a perfectly healthy baby, after a twenty-minute stress test. It made me giddy to hear that he sounded perfectly healthy, as I once again felt, like a “normal” pregnant mom. Easton is fine. His mom, however, has been overwhelmed and stressed by the twist and turns of this month (I’m currently resting, no worriesJ). I was lying (or maybe laying…not sure) in the hospital bed (nobody knew we went), and our phones were still buzzing from friends texting us scripture and encouraging words for the day. Oh the love and joy that your friendship and encouragement brings us! As this month draws to a close, we don’t have the slightest idea how the rest of this journey will play out, but we are beyond humbled and blessed that so many people are reaching out to say they love and care for us.

February will always be a special month in our hearts because it is one month of the year devoted to raise awareness of not only congenital heart disease in babies but awareness for ALL heart related complications and disease. If you ask me, in our house, every day we will be grateful for the little tiny heart that continues to beat, even though not deemed medically perfect, and forever be grateful for the impact that Easton has had on our own hearts. Every day is heart awareness day in the Sparks family:) 

Another New Doctor...

The word disease is a hard word to hear and then let alone cope with. I don’t think I realized that when Easton was first diagnosed with his heart defeats that he now fits under the umbrella of having heart disease; however, he does. Our son has heart disease. As any parent, it’s hard to hear that anything is wrong with your baby, but to hear that our son, Easton, suffers from a potentially life threatening condition was my tipping point today.

So far, along this journey, all the doctors have given us a hopeful prognosis (with a long road to recovery) but today’s doctor’s appointment, left my heart burdened to hear that Easton may not live, once the doctors are able to see what his heart looks like after birth.  We don’t know and won’t know until after his arrival. Today the neonatologist told us that with all heart diseases, there is a spectrum, and I guess I hadn’t allowed myself to ever venture to the “other side of the spectrum.” I’ve visited and often visit the fixable side of the spectrum, but today my heart, mind, and eyes were exposed to the less talked about side of the spectrum. I find it a difficult balance between maintaining hope that Easton’s heart can be restored and made complete and that if it cant, that it’ll somehow be all ok. As much as it pains me and is hard to write that it will all be ok (regardless of the outcome), I know deep in my core that it’s the truth. You see, I HAVE to cling to the truth that Jesus is in control of ALL things, and that whatever happens, it’ll be His will and plan for our lives.

On the car ride home, I was overwhelmed with so many emotions of frustration, grief, jealousy, and the list could go on and on. Stephen was driving and speaking truth along with sharing how different people have shared that they now feel like they know people with unshakable faith. I had to laugh because I said, “Surely you don’t mean me.” The same person who was just asking doubting questions about God’s plan and perfect will. (Why is God allowing us to suffer? Why Easton? Why us?) To others, people see us as having unshakable faith…it made my eyes fill with tears that people see us as strong believers in the midst of the storm. Jokingly, to push back the tears, I said, I’m ok/have been ok to be rowing along in my pirogue (it’s a small boat) sized faith boat, and the Lord is calling me over to a yacht. I told Stephen that I was perfectly fine in my faith boat, but apparently the Lord has bigger and better plans in this yacht of his. At least the Lord is with us in the waters and never intends on leaving or abandoning us. In my heart, I do believe that even on days when my heart and brain aren’t working at the same processing speed.

When we got home, I got a text message from an old friend and all it said was that he loved us and as praying for us. In that moment, I am (yet again) humbled at how the Lord is using past friendships, current friendships, and even those unknown to us to minister to my weary soul on days like today. Not all days are bad days but on even when the news is heavy and my soul is burdened, I take rest in that God is paving our path and thankfully letting others journey it with us.

I find it fitting that this morning I came across this bible verse that reads, “The Lord makes a way through the sea and a path through the mighty waters.” (Isaiah 43:16)

Thoughts from Friday, Feb. 20th

Days like today, are just hard days. There's no rhyme or reason but today's was one of THOSE days. You know the kind of days I'm talking about. 

Today marked two weeks since we found out about Easton's heart defeats, and the past few weeks have been filled with phone calls, voice messages, doctors appointments, and lots and lots of prayers. Prayers from friends, family members, and by now, people who we personally do not know but have somehow or another been led to pray for us and our sweet little boy. 

I don't know exactly what was the tipping point today, or if there was even one to begin with. I'm finding that I don't really have bad days, I have moments where I'm overwhelmed. Mostly, my days are good, filled with the hustle and bustle of work duties, but I find that when I'm tired, I'm vulnerable. And when I'm vulnerable, I'm emotional. Hence, herein lies my tough day. 

Easton's cardiologist called to check on us today. Who does that? I have felt at peace along this journey because I feel as though God is putting the right people and doctors in our path who are going to work to mend and fix our son's heart. As nice as it was to talk to the Dr., I found that it was once again a painful door in my heart to open. It's not like I forget his has "complicated" heart problems, it's just that life continues to go on in our day to day lives. After about twenty minutes of talking with the cardiologist, my heart was just saddened and heavy. I found, and often find myself asking, "Why Easton?" But there are multiple things in my life that I will just not ever know. What I do know is that God has fearfully and wonderfully made Easton and placed him in my uterus and has allowed him to grow and develop thus far. When I think about how a year ago, my heart was heavy at the thought of not knowing if we would even have children, it's in these times, I have to cling to the truth that He is faithful. Period. 

We got another phone call from a neonatologist. Not a stranger, but we have a unique connection with this doctor. He was very nice and very helpful. But I found myself, once again, faced with the hard truths that we may have to face in just a few short months. To be told that he will be kept alive by multiple machines, in a NICU for possibly several months, and most gut wrenching but not being able to hold him for quite some time can do a work on the heart of any mama.

I don't feel capable or strong enough for all of this, especially on days like today. But then I'm reminded of the pure miracle that I have growing inside of me. He was kicking and moving around, and I take that as, "Hey! Mom, don't count me out!" It's in those moments that I can exhale all of my worries and inhale the goodness and thankfulness of having this sweet peanut who continues to grow and develop in me.

Are my hard days over? Absolutely not but I rest assured that we have people who love us and are praying not only for Easton's heart but for also, for us, his parents. For those of you who are praying, I may never meet you or even know you, but am beyond humbled and blessed to be apart of your prayer life. It's through the thoughts and prayers, that help carry me through on days like today. 

Just the Beginning

      Unknown to us, the first Friday of every Feb. (yesterday) was Wear Red Day, a day to promote awareness for heart disease. It's also the day our baby boy received a nickname "Little Red Ninja" and we want you all to know why. His heart isn't growing as it should, specifically his pulmonary artery (currently not viewable, likely too small or not present) and the collateral arteries that feed to it (condition called MAPCA's). When he is born, he will need heart surgery before ever going home and potentially more after that. Over the next weeks and months, we will be able to learn more of his condition and what surgeries will be needed. While this is tough news for any parent, at no time have we or will we lose faith in He who got us to this point. Long ago we surrendered this journey through infertility to His great and perfect will and even after yesterday's news, we still and always remain fully committed to that. Today we take great comfort that his heart is beating right now only because of God's perfect design and ask that you all join us in the coming months in praying for growth, the Dr.'s involved, and that God would glorified through his life.

Easton Bauer Sparks, our Little Red Ninja 

Coming in June