Marching On

I have so much I want to remember it’s hard to figure out what to blog about each day. Where do I let my thoughts go next considering my journey will never end? I don’t want to forget the details of the journey we were on, I don’t know if I could. Because of that, I want to continue with our story so we have a chronological picture of what this year has looked like for us so far. I didn’t expect my blogs to play out this way but its fun and so therapeutic for me. Maybe, for you too.

Yesterday, I had to ask Charlie for some quiet time so I could write down a thought I remembered. He asked me (a million) questions about what I was typing and it occurred to me he has his own perception and had his own journey through all of this. I, of course, knew that but don’t always think about it. I wish I could pull out how his little mind processed all that he saw. Did I guard his heart enough? Does he know I tried my best? I  can’t wait for him to get older and read our story through his mom’s eyes. He is so much a part of my healing. I’m so thankful for him. I’m so thankful for this outlet.

We were in the specialist office every three weeks after the Trisomy 13 diagnosis was confirmed. I guess we were considered high risk for observation even though there was nothing they could do. A Trisomy 13 diagnosis alone made our angel “incompatible with life” but what that extra chromosome 13 would cause was still a mystery to us at first. Isn’t that weird? Our baby could have minimal issues but just because there’s an extra chromosome 13, she could die any minute with no warning or reason. Talk about a type A, gold/blue personality’s nightmare. There was nothing I could do and I might never know why.

“but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31 NIV

As that sweet nugget grew so did our view of her deficits. Every week we went into the office a combination of nauseating fear and pure excitement would set in. A similar dance seen in the stages of grief as well. “Yay! We get to see our girl, but what will she be like today?” At first all we could see was holoprosencephaly, which means her brain is fused together. We were told this is definitely life limiting outside of the womb. There were also issues with her facial profile and her heart but she was still too tiny (and stubborn with her wildly spirited constant movements) to see the full effect.

We had no idea what the future would hold. We had no idea how to prepare for the spectrum of circumstances that could come our way. During this time in our journey, which was the end of March, we were celebrating because we still had each other while planning a huge yard sale. I remember vividly being told most Trisomy’s miscarry by 24 weeks. We were holding our breath, smiling, and trying to enjoy the ride. As bad as we wanted all of this to disappear, and knew our God, the ultimate physician, could do it; we had to be ok with the fact he hadn’t. His purpose and His timing are always perfect.

“Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.” Proverbs 19:21 NIV

Day 6. I want my son to read this one day and know how much he mattered during our journey.

“Charlie. My sweet boy. I know these past few months were focused on Eve and that’s ok. God was doing big things through her, just as He will through you one day. You did not want for love or attention. Being at the lowest in my life with you by my side was the biggest blessing. If I cried, you brought me Kleenex. If I was upset, you sat with me and held my hand. If I needed a hug, you squeezed harder than before. If I was silent in the car, you asked questions and helped me see truth and love. If I needed to hold a baby, you let me cradle you. You were there for me and loved your sister. Your face always lit up the room for me. You have prayed for her every night since the beginning. You are the best big brother I could have ever dreamed of. You had a key role in God’s plan. From the bottom of my heart, Thank you. I love you more than words can describe.