Friday, September 5, 2014

Still a miracle

I wake up every day terrified and grateful. Terrified that today is going to be the day I have to say goodbye to my daughter. Grateful that it's not that day yet. Grateful to have one more day of kicks, rolls and hiccups.

Yes, hiccups! 

Something that most women (myself included) take for granted in pregnancy. I was never sure I could even feel Ted's hiccups. I distinctly remember at one of Ted's ultrasounds the tech telling me he could see the baby hiccuping and asking me if I could feel it. I believe I lied and said, "yes". I honestly couldn't feel anything or tell the difference between a kick and a hiccup.

But with Lily...this sweet little girl seems to know exactly what her mama needs and exactly when she needs it. 

Every OB appointment is gut-wrenching and emotional. It always feels like we are hearing Lily's diagnosis for the first time. It never gets easier to hear it. Jason and I stress the whole weekend before. The day of the appointment I try to pay extra close attention to feeling Lily move, for fear that we will go in and be told her heart stopped. 

Our 31 week appointment was no different. I worried all day...all the moments in between her sweet kicks. Jason and I drove to the appointment in silence like we always seem to do. The anxiety and nerves really kick in as we sit and wait for the nurse to call our name. As we are sitting there, Lily relieves some of my fear and anxiety and she starts rolling and kicking.

But these kicks are different...not quite as strong and they have a rhythm. I told Jason that I thought she might have the hiccups! (One complication that can arise from Anencephaly is having an excess of amniotic fluid. This can happen because the babies don't know how to swallow the fluid. It can cause complications in the pregnancy including preterm labor.

Jason and I always get really emotional when we hear Lily's heartbeat. It is always so strong, so steady. But this time, also mixed with a different rhythm. Even our midwife could hear it...hiccupsDo you know why hiccups are so amazing when you are pregnant? It's a sign that your baby has the ability to swallow. 

Just knowing that Lily may be able to swallow and hiccup like other babies brought an overwhelming sense of peace. 

It reminded me that no matter what, her life is a miracle. 

People tell me (and often times I am reminding myself when Ted's on one of his daredevil missions) what a precious gift Ted is to us and how he is helping us get through this difficult time. While I appreciate it, and as I said, tell myself this, I feel like it can diminish Lily's worth. Ted is our miracle and so is Lily. I am grateful for Ted and for Lily.

She is worth every second of our sorrow and grief. She is worth every tear. Worth every contraction and minute of labor. Worth every lonely night and broken-hearted night that I don't get to hold her in my arms. In fact, her worth is why we grieve. I love Ted with every ounce of my being and my love for Lily is the same. My heart aches all day long when I think that I don't get to keep her. When I think about Ted growing up without his sister, I have such a heavy heart.

She is our miracle no matter how long we get with her...whether 5 minutes, 5 hours or 50 years. She is a miracle, created in God's own image and likeness. 

She is a miracle. She is my miracle.

I love this onesie found here :)


Some pictures of the dare devil in action.
Love him to pieces...
despite the number of times a day he makes my heart stop. 




Wednesday, August 20, 2014

Waiting game

30 Weeks - A fresh batch of nervousness and anxiousness has come over me lately. I think back to being 30 weeks pregnant with Ted. I was on my way to Iowa to celebrate with family and friends our upcoming arrival. My wonderful aunts threw me a shower and my sweet Iowa girls threw me another. It was a wonderful weekend of family and friends and celebration. I was starting to get "uncomfortable" with my pregnancy. Swollen ankles...seriously, they are my least favorite part of pregnancy. I can handle the growing belly, even the stretch marks, but nothing made me feel grosser than "kanckles"...ugh.

With Lily, I honestly barely even feel pregnant. My belly hasn't grown nearly as much as it should. If you don't know me and know that I am pregnant, you may just think I have a "perpetual gut". There was a time I would have been thrilled to not gain much pregnancy weight. Now it just means my little girl isn't growing like she should. I look down at my small belly and I can barely see past the tears. But, even though she is little, she is mighty! Her kicks are stronger than Ted's ever were. :)

I'm anxious and nervous all the time. Every slight ache in my stomach I feel may be the start of labor. There are days where I just want her to be here...to get to the next stage of grief and suffering. But, then I will wake up in the morning and worry for hours until I feel her move. I'm not ready, but at the same time, sometimes I just want it "to be over". 

I hate thinking that or saying it out loud, but it's true. (I have promised to be honest in case anyone else reading this is going through something similar. There is no right or wrong emotion or feeling.) I know in my heart it will never "be over". No matter what, I will think of Lily every day and miss her terribly. But this waiting game...it can really take its toll on your heart, your emotions and shatter all your hope. With Ted, there was anxiety, but it was minimal compared to our excitement to meet him. When my water broke with Ted, there was a slight panic, but then the rush of adrenaline because I knew it meant we would get to meet our baby soon, and...we would get to take him home.

I can't wait to meet Lily. To see her, to hold her in my arms, to examine her every little detail. To see if she has her brother's sweet cheeks. But I also walk in a shadow of fear for this moment. I'm afraid she won't be born alive. I'm just as afraid that she will be and I will have to watch her stop breathing. I can't stop thinking about the moment they will take her away from us and I will have to leave the hospital with empty arms.

To feel so helpless and hopeless is not in my nature. 

So, we continue to pray. As much as we try to prepare for our reality, we also beg God for a miracle. We pray for peace every day...that we will be at peace with her birth, her life, with however long we have with our sweet Lily girl. We do this, because honestly, it's all we have.


27 weeks on the left with Ted, 30 weeks on the right with Lily 

Friday, August 8, 2014

bittersweet

It's been somewhat of a roller coaster of emotions weaving in and out this week...

My parents have been here all week and it's been so amazing! Despite the heat, we've spent a lot of time playing outside, both in our yard and around town. There's just something about having them here that brings me peace and makes me feel safe. I wake up afraid many days thinking that today is the day and I'm not ready yet. But with them here, I haven't been so afraid. There's a part of me that has hoped she may come this week, just so they would already be here.

We went up north for a day to get out of the heat and go fishing. Ted had a blast playing in the water, throwing mud and basically just being a messy little boy.

He's grown up so much this past week...no more baby in this house, he's all toddler!

I've been able to share with my mom some of the outfits I bought Lily and the beanies I've been making for her. Lily's been doing acrobats in my belly and they've been able to see her move like crazy. It makes my heart ache thinking this may be the only way they know her. 

We had an ultrasound this past week to see Lily again and hopefully get some 3-D images of her. I've been anxious/nervous/worried all week...not the way anyone should feel before a 28 week ultrasound. As all appointments have been, it was emotional, but this one was by far the worst.  I think I went in still hoping for a miracle or a misdiagnosis. On the very first image, the tech typed "CEPHALIC". My heart just sank heavy into my chest, like someone placed a brick on me and I couldn't breathe. 

The tech had a hard time getting a full image of her face or profile because she is head down, face down and very low in my pelvis. I was really hoping to see her more. 

We did get to see her sweet little hand up by her face and I know in my heart she has her brother's sweet cheeks. I asked the tech if she saw any other anomalies and she simply said, "everything else looks perfect." A dagger in my heart. It was so bittersweet

That's all you would ever want to hear in an OB appointment or an ultrasound, but when your daughter has been diagnosed with Anencephaly and they have told you over and over that if she survives birth at all, she may only live a few hours, it just cuts you even deeper to hear that besides her brain and skull, she is perfectly healthy. I didn't even know I had it in me to cry like that anymore, but I did. 

I wept. And Jason wept too.

We went out to the waiting room to wait for our CD of pictures and I sobbed some more. I didn't even care there were other people there...waiting for their carefree ultrasounds. I couldn't stop crying. It felt like every ounce of hope I was praying for was being washed away. I had tried so hard to be strong, but I just couldn't be anymore.

It really made me think about what it means to have hope. I know Bradley's parents held on to hope until he took his last breath. I know Chris did the same when his wife died, also too soon from cancer. I think I hold on to hope because honestly...I cannot imagine one day of my life without Lily here. I cannot even begin to think of not getting to bring her home, take her to Iowa or watch her grow up with Ted. It's truly unimaginable to me. I cannot even begin to think of what it will be like to walk out of that hospital not carrying my daughter. So I hold onto hope because I can't remember what life was like before her and I can't imagine life without her.

Sometimes I wonder if knowing this far in advance is a blessing or a curse. I pray with all my heart I never have to know the answer to that. I think of women who went in to a 36 week routine appointment and found out their child had no heartbeat. I think of women who learned of their child's condition at their birth because it was before ultrasounds. I think of my friend's parents who lost their daughter two days after she was born and 9 months after a healthy pregnancy. My heart aches that they didn't have any warning or time to prepare.

But can you ever really prepare? I think about how much my heart aches right now and I already know that it's still nothing compared to what we will go through. The anticipation is gut-wrenching, but the reality, I know, will be beyond what I could even imagine. Labor doesn't scare me...I would go through any amount of pain for Lily. Delivering her doesn't phase me either. But when I think about the day, the moment that is (most likely) to come when they will take her away and I will never see her again? I can't breathe. I can't see passed the tears that well up in my eyes. 

There is no way to prepare.

 Lily girl's sweet hand and kissable cheeks just like her brother.















Monday, July 28, 2014

Currently {14}: It Is Well

Thinking about: Ted's 18 month well visit. We just had his 15 month visit...happy, sweet, healthy, perfect 15 month old. I couldn't even go to the desk after the visit to make our next appointment. Lily's due date is October 27th...Ted is 18 months on October 26th. Three more months with my Lily girl in my belly. When I think about how quickly three months can pass, the anxiety takes over. I think about all of those "To-Do's" again and I can't even breathe. I have accomplished some though and each one comes with it's own set of tears and still feelings of disbelief. I think, this cannot be our reality.

I've picked out some sweet outfits from this adorable Etsy site. I've made several beanies and bought more yarn to make more. I get pretty crazy when I'm in "beanie making mode" and I must say it's worse this time. Of course, I want it to be perfect and just right, but I don't know when she will be here, so I am making an assortment of different sized beanies. I've contacted Now I Lay Me Down to Sleep to do photos and String of Pearls for a memory kit. I've bought stuff to make a banner for family pictures and to hang in Ted's room. Still, with all of these things, I still find it hard to believe what we are (most likely) preparing for and it still just seems so...impossible.

Reading: It Is Well: Life in the Storm. It has taken me awhile to pick up this book. My dear friend, Chris Faddis wrote it about his deceased wife's battle with cancer. I know the story, I watched it all unfold, but something kept me from picking it up when it first came out. I read it last week and can honestly say I've thought every thought and felt every feeling that Chris and Angela have felt. In many ways a terminal pregnancy diagnosis is a lot like a terminal cancer diagnosis. It's unimaginable. Angela was in her early 30's and took very good care of herself. I've had a very healthy pregnancy despite our diagnosis. You cling to hope, but at the same time forced to face reality. You beg God for a miracle, but you make plans just in case. You get angry, you get sad, you feel weak and helpless and you scream at God and wonder why this is happening to you. But amidst all of those emotions...you feel God's tremendous grace pour over you. As impossible as it feels, somehow it is possible to make it through this storm. Angela is in God's presence and as many of us believe, "It is all joy." While we pray and beg for a miracle, we face the reality that Lily will (most likely) join her. As much as my heart aches, my ultimate goal for my children is for them to be amidst, "all the joy." 

Thankful for: So much. As awful and painful as this is, I am constantly reminded of how blessed we are. My sweet, sensitive husband is absolutely amazing. I had no idea how sensitive Jason was until I walked up the aisle to him on our wedding day to see tears running down his face. He's a real man and he is not afraid to show me when he is broken. We are already a stronger unit because of Lily's diagnosis and we keep getting better. We face these trials and we face them together. For that I am beyond grateful.

We also have this sweet, silly, snugly 15 month old boy!! It is such a strange feeling to be so full of sorrow and so full of joy all at the same time. Ted is pure joy though. I feel like I say it a lot, but I don't ever want to forget what a blessing he is to us. It's impossible to not smile and laugh when you are with him. He doesn't make us forget, it's impossible to forget, but he does show us that we continue to not just survive, but we can thrive through this part of our life in the storm.












A Mama Collective

Thursday, July 17, 2014

A personal saint

I've never experienced such a pull of different emotions in my life. On any given day right now, I can be laughing and smiling at Ted and then something happens or nothing happens and I'm reminded I don't get to keep my Lily girl and the laughter fades and I have to fight the tears. 

My heart aches the most for Ted. Granted, he most likely won't have a memory of this time with her but, my greatest heart's desire is to have children close in age. The greatest gift we can give Ted are brothers and sisters. My heart aches that Ted will not get to keep his sister. This is what turns my sadness into anger. 

I'm angry that Ted's only memories of Lily will be our stories. Angry that we may not have the sweet keepsake photos of Ted holding his sister. No fighting over toys or memories of sharing a room together. No sweet moments of all of us snuggling together.

Ted should get to have his sister here with him. He should grow up tormenting her, being annoyed by her, but also wanting to always protect her from anything and everything. Instead, she will be the one watching over him. And then the anger turns back into sorrow...a terrible, unbearable feeling of loss already.


This is Ted with Bradley's little sister Lynley. My heart has never felt so conflicted. It brings me so much joy to see this. At the same time, my heart aches as I think who is missing from this picture. I look at it with burning tears on my face that Ted might not ever get to stand over his sister and push her in a swing. 

At the same time I rejoice. I see Ted and Lynley together and I get a glimpse of their future. They will have a bond like none of their other friends. I envision them being a comfort to each other. They will each feel a loss they don't even remember. They will each remember their siblings through the stories we tell. 

And the most beautiful thing they will share? They will each have their own personal saint praying for them in Heaven. Nothing has ever filled my heart with so much awe, wonder and sorrow all at the same time.

Monday, July 14, 2014

Impossible

24 weeks. Another milestone week. This one hurts even more than 20 weeks. There should be a sense of relief. 24 weeks means if a baby is born early their chance of surviving increases every single day after 24 weeks. We should be looking for another crib, sorting through baby clothes, or making a new newborn "must-have" list, but instead...my list consists of a bunch of "to-do's" I still can't even imagine having "to-do".

Jason, Ted and I spent an amazing long 4th of July weekend in San Diego with great friends. They were exactly what we needed them to be. They entertained, gave us time to ourselves, asked about Lily, and most importantly told us that they were praying for us. 

It was a blissful week. Ted is an absolute joy right now, showing us his personality more and more every day. He's adventurous, he's non-stop, and he loved every second of being in San Diego...unless someone took his ball from him. ;-)

We spent time with friends, talking and relaxing. 

We took Ted to the beach and waterfront park.




We went to Balboa park to ride the carousel and train and visit the Botanical Gardens.





We went to Seaport Village to watch the boats and kites. ;-)





We snuck in a date night to Coronado Island.

It really was wonderful, but the whole time there was this feeling lingering. A lingering fear of going back to our reality

On most vacations, Jason is "ready to go home". This time he wasn't and I wasn't ready either. We were both really quiet on the ride home. That lingering "to-do" list kept popping up in the back of my mind and whenever I think of it, I immediately start to cry.

That to-do list I don't want to do. I don't even know where to begin or how. But at the same time, I don't want to look back on this time with her and have any regrets. I don't want to wish I had done more or done something differently. 

I want to be able to tell Ted as he grows up that we cherished every single moment we had with Lily. I want to tell him all the things we did together for our little girl and his little sister. It just seems impossible though.

In my mind, I see Lily with her brother"s sweet chubby cheeks. I can't imagine a day when I won't get to kiss them. I don't want to think about saying goodbye to those cheeks. I don't want to make plans for "our only memories" of her. So impossible.

My sweet Lily girl, I love you so much. In my dreams, I imagine you with the same squishy kissable cheeks your brother has. I want to hold you in my arms and have you fall asleep feeling your sweet breathe on my chest.  I want to kiss those sweet cheeks and never let go.

I want to see you napping with your daddy on the couch watching baseball. I want you to giggle at your silly big brother. I want to see Ted patting you on the back and smothering you with kisses.

I want you to spend your first Christmas in Iowa meeting all of your cousins who love you so much. I want to see you smile and see if you keep those same squishy cheeks like he has. I want to have all of your first moments and never think about how we will spend your last. 

Whenever I think about not having these moments with you I can't breathe. My eyes sting from the tears. When I think about ever having to let you go...I simply can't imagine it. I can't imagine our life without you in it. 

My heart is always aching and I am waiting for someone to wake me up from this dream. The idea of losing you is impossible, it's simply unimaginable. 

That's what people keep saying to me. "I can't imagine what you are going through." Truthfully, I can't imagine it either. I honestly can't imagine ever letting go of you. When I feel your strong kicks, I can't imagine you ever letting go either. You are so strong, Lily girl...so much stronger than your mommy.

I know in my heart God has a plan for you. I know in my heart that you will only know love in this world. This brings me so much peace and breaks my heart all at the same time. You are so loved, sweet girl. So loved by so many. 

My sweet Lily Frances, you will never know how much I love you...
24 weeks with Lily Frances