We are in possession of the most beautiful cake. Thank you so, so much, C.J! We haven’t cut the cake yet, but plan to momentarily. Will the filling be pink or blue??? I have a flock of butterflies within. The knowledge of a little girl or little boy with a specific name is going to deepen my grief, but it will also intensify the great love I already have for Baby.

“Before I formed you in the womb I knew you, before you were born,I set you apart.”  – Jeremiah 1:5

… Stay tuned

Hi Baby,

You are so active inside of me right now.  I take such joy in your tiny bouts of activity, each little squirm and wiggle.  You are such a strong little thing, contrary to everything we’ve read about T18.  I’m so anxious to meet you, but hate the thought of separating you from the life line that has devotedly sustained you so far. The tie that physically binds us is destined to be cut in two, but there is a tie that will forever tether you to my heart. Nothing and no one can separate that bond. I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.

Condensed into such a short period of time, I hope you will be able to see and feel the tremendous lifetime of love your family has for you. I hope you will know that your sweet little life was not in vain. You are fearfully and wonderfully made, God’s work of art.

Right now, as you’re nestled up inside of me, the concept of being without you seems blighting. But I will find solace in knowing that someday I’ll see you again. Your sweet Daddy and I will have an eternal little baby angel waiting for us in heaven.

I love you, little one.

Love,
Mommy

Since the end of December I’d felt like a fly trapped between the screen and a window pane; searching in vain for a rip in the screen or a crack in the glass, some way to escape the possibility that I’m really locked in. Then the storm hit. I lay drowning on my back in the flooded sill, kicking my legs and flapping my wings, trying to breathe and make sense of it all. Not only was I trapped, I was going to be killed in here.

The rain finally subsided and I was able to climb to a place of safety. Instead of continuing to struggle, I let the warm breeze fill my exhausted lungs, the blanket of sunshine dry my battered wings, and the blue sky soothe my many tired eyes. I get caught off guard by the left over rain drops that occasionally drench me all over again, but I’ve figured out they won’t kill me.

The distant sky is bruised with storm clouds, threatening to overtake the consoling sunshine. I am frightened, but instead of worrying about the storm’s fury, I find hints of hope and eagerness for it. Maybe it is THIS storm that will be powerful enough to rip the screen out of the window and free me to fly.

Today was certainly not one of the easier days to get through. I started reading a book called “I Will Carry You” by Angie Smith. It is an account of one family’s journey through the loss of an infant daughter at birth. (The same people that wrote the song of the same title mentioned in a previous post.) While beautifully and eloquently written, it is gut wrenching to read. I think I would be ugly crying if I were reading it outside of these circumstances. I’ve decided to put that one down, at least for awhile. Someday I’ll be ready for it, but not just yet.

This morning a dear friend of mine stopped by with coffee and a little something for me. The little something turned out to be a gorgeous knitted (crocheted?) baby blanket that a friend of hers had made for Baby. I was so touched by the benevolence of a complete stranger. If you’re reading this, Thank You!! 🙂

If anything, this tragedy has brought forth so many precious people, even a few new friendships. William and I are so blessed to not have to walk this dark road alone. I can’t possibly thank you enough for your love and encouragement. Even the people we don’t know personally, but who care enough to follow along through this blog, thank you. Please know that we cherish each and every one of your comments even if we haven’t directly responded.

Tomorrow is a new day. I’m thankful to have made it through this one! God bless!

A beautiful day today without much event — reading and relaxing between loads of laundry.

We do have a couple things finally lined up to celebrate this little life. I have a 4D ultrasound scheduled for February 11th. I explained with a bit of awkwardness to the person that answered the phone that this wasn’t a typical joyous occasion. Perhaps taken a little off guard (I guess that’s not a call you get every day!), he explained all of the options available. I chose a half an hour session and opted to purchase a teddy bear with a recording of the baby’s heart beat.

Secondly, William spoke with our geneticist this afternoon. He called her to request that she send us our baby’s gender in a sealed envelope. I was given the awesome idea to take that sealed envelope to a bakery and request pink filling for a girl, or blue filling for a boy, depending on what it says inside of the envelope. (Thank you, Regina for the great idea!!) Not exactly sure when we’ll be cutting the cake… but I’ll be sure to post a video to share the moment.

In addition to requesting the gender, William also wanted to share this blog with the geneticist. I was astounded when William told me that she’s already gotten word of it and has been following along! Wow! (I hope my writings have been able to convey that I’m not still the unhinged disaster I’d suddenly become during our last phone conversation on January 9th!)

Another day has come to an end and we’re still breathing. We made it through another one, all thanks be to God. I am continually amazed by the strength and perspective that the Holy Spirit instills within me. All I had to do was ask. I am blessed and fortunate to have already had a sturdy infrastructure of faith in place — my safety net to rescue me out of a downward spiral. Not to imply that it’s 24/7 happy-go-lucky over here now. We, of course, have our frenzied interludes of tears and grief. It’s just different in that we realize we’re not taking up residency in the valley of the shadow of death. We’re merely walking through it.

When I really sit back and reflect upon it, I am actually astounded by the great faith that has seemingly sprung forth from within me throughout these recent weeks. There was never a time that I didn’t BELIEVE in God, but definitely a time in my life where I had little or no regard for faith in God. I’d seemed to be doing a pretty good job of things on my own, so what was it that God could possibly help me with? I spent much of my teen years and beyond in my lackadaisical fog believing that “bad things” only happened to “other people”. As we grow up, we all find out sooner or later that that just isn’t so. It’s not that trials in life MIGHT happen, it’s that they WILL happen. When they do happen people either become bitter and angry, dismissing God altogether, or they cling to their faith with all their might, allowing God to minister to them. When I was first given the terrible news about my unborn baby, you’d better believe I was bitter and angry. “HOW COULD GOD ALLOW SOMETHING LIKE THIS TO HAPPEN???” I shrieked from the floor of my bedroom. But like a wounded child, I allowed God to pick me up as I continued to weep. Instead of staying bitter, I could sense His arms wrapped around me and His great desire to comfort me. I willingly gave in and it felt so much better than the mess of anguish I’d been holding onto so tightly for two days. How could anyone possibly get through something like this without God? There is a much, much, much bigger picture than we could ever possibly wrap our little pea brains around. Knowing I could never make sense of it with my human brain, I’ve elected to simply trust God, just as it seems that He trusts me? I don’t necessarily feel that I’m being TESTED through these circumstances, but instead that I’m TRUSTED. God already knows my heart. There’s no sense in trying to analyze everything or to try to figure out the who, what, when, where and why of it all. IT JUST IS, and yes, God, you can trust me with this little life.

On these long stretches of gloomy, cloudy days, it’s easy to forget what the warmth of the sun feels like. But I never assume that the sun doesn’t exist.  I might not be able to see it or feel it, but I know it’s still up there. If I just keep my head up long enough, I WILL see glimpses of blue sky peeking out from beneath the clouds — proof of beautiful days and that the sun does indeed exist.

It was a relaxing, uneventful day that concluded with Breakfast for Dinner, which was coordinated by dear friends. I appreciate being able to laugh, relax and take in the moments of joy. Now that the burning shock of our baby’s diagnosis has sunken in, it’s safe to say that William and I are at peace with the hand that we’ve been dealt. The peace serves as a soothing aloe that alleviates the pain of our terrible sadness. It’s been possible to settle back into the remnants of our normal routine of day to day life.  I delight in this state of surreal quietude, the calm before the storm? Were it physically possible, I would gladly spend the rest of my days in a perpetual state of maternity cherishing all the little heel and elbow pokes from beneath my skin.

However, time stands still for no one. There’s “no app for that”. The future is uncertain and will inevitably be here before we know it. I was amazed at how fast the past three weeks have flown by. Assuming that this pregancy goes to term (which we have been given no guarantee), that gives us about twelve weeks to go — twelve weeks that will fly by at an equal speed. Past that point the deadly waves crash and roar in the distance.  I can’t let my eyes stay focused on them because I know that God will put them into proper perspective once they are upon us.  He will not allow them to take us under.

Tonight I was given a prominent reminder of God’s unique and amazing ability to create beauty from ashes in the form of a text message.  The text message was from my birth daughter, out of the blue, thanking me for giving her life, and telling me that she loves me.  She is my ever glowing rainbow as a result of that long ago storm.  A time when I thought for certain I would drown — now radiantly beautiful.

Years ago when women learned that their babies would not live long after birth, they were strongly encouraged not to bond with the baby. If you weren’t attached to something, you wouldn’t have to waste time grieving over it, and you could just get back to life after all was said and done.  I’m not sure how someone could possibly have imagined that this was a good idea nor can I imagine being forced to deal with the loss of an infant in such a way.

One of those unfortunate mothers was my now deceased grandmother. During the 1940’s her first born daughter, Marilyn was born with a heart defect.  The details are sketchy, but it is my understanding that Marilyn lived a couple of days or weeks. My grandmother had limited contact, and was told that her baby was “just in the next room”. Never given the chance to say even one last goodbye before Marilyn passed on, my Grandmother lived the next few years in a deep state of depression. As if that was any wonder!

I’m so thankful that that mindset is now a thing of the past. I am moved to tears to see all of the beautiful ways families are now encouraged to celebrate the short lives of their tiny babies.  We are able to not only create memories, but we’re able to preserve them with foot prints, hand prints, locks of hair, and photographs.  Proof to us and the world that our treasured babies EXISTED even if only for a short time.

Prior to knowing anything was wrong with this little one, there are ways I had hoped to simply honor the memory of this pregnancy. In all likelihood, this would have been my last pregnancy. I wanted to remember this time with a professional maternity / family photo shoot, a 4D ultrasound, and a cast of my belly. I realized today that I still want and need to create these memories, but now for other reasons than this being my last pregnancy.  I also think that as hard as it might be to know and imagine the specific loss of a little boy or a little girl, these are the moments that I still have with my little one. Our original plan was to wait until the baby was born to find out. However, that was with the notion that we’d have a normal lifetime with this baby to enjoy all the little girl or little boy things that were to come. That luxury has (seemingly) been ripped out from under us. I imagine how precious it would be to know if these little nudges and prods were gifts from a beloved little son or daughter. “Who’s in there?”

I spent a good part of the afternoon relaxing in a warm bath, which seemed like the best place to be on a cold rainy January afternoon.  It was hard to be in that place at first, as that’s where I was when I received the devastating phone call from our geneticist.  However, I quickly relaxed, and let the sweet little pokes and jabs that were protruding from my belly surface occupy my attention. 

I watched as the literal ripples traveled across the water, and thought about the figurative ripples that this baby’s life would also create here in this world.  God has something beautiful in store here.

The bout of worry that plagued me today was wondering if I would have the mental clarity to know what measures to take once this baby is born.  We have been told by the doctors, and read in other’s accounts that the medical community is not enthusiastic about rescusitating T18 babies.  In most cases, the attempts are futile.  I understand that.  But at the end of the day, these doctors and nurses get to go home to their families and our situation was simply just chalked up to one of those sad days that goes along with the territory of being in the medical field.  This isn’t going to be just a “sad day” for us that we can brush ourselves off and walk away from.  Every decision we make that day will live with us for the rest of our lives.  Will we be inflicting unnecessary pain and suffering on this child if we insist on surgery to repair the heart defect?  Or will we be okay with solely offering care and comfort (DNR), letting nature take its course?

Based on many of the stories of other T18 babies I’ve read, there are many people that have been okay with taking the route of offering just care and comfort.  I think, ultimately I would be just as okay with that (as anyone could be expected) but for the fact that I come across these other stories featuring pictures of cheeky 1 and 2 year olds smiling from their little Bumbo seats, etc.  These are the T18 babies who have made it past those first hours, days, weeks, months.  Could my baby have been one of them, had we insisted on “drastic measures”?

I know there is no sense in worrying about the future when I really have absolutely no idea what to expect.  I do need to come up with a birthing plan though.  Fortunately, that is nothing that is written in stone and we can change it at any time, but it gives our doctors and nurses an idea of what our situation is and what we’d like to have take place once this baby is born.  Problem is, I just don’t know right now, not knowing exactly what we are facing!!

Just as God has given us the strength and the tools to have gotten through these past 2 1/2 weeks, I know that He’ll pull through for us when that time comes.  Please pray that William and I will have the mental clarity and Godly insight to do what is right for our baby, according to God’s will.