Monday, September 29, 2014

Some days

Some days are so much worse than others. Some days I find myself crying all day long and I don't even know why. I mean, I know why, I just don't know what triggers it.

Maybe it's because on Friday Ted was 17 months and Saturday marked one month until Lily's due date. In one month, Ted will be one and a half and Lily will be...

Maybe it's because the weather is getting cooler. October used to be one of my favorite months to live in Arizona...now I fear it. I always long for Arizona fall and cool nights...right now I dread October.

Maybe it's because everyone else's life seems to be moving forward and we are stuck in this place. This place I never imagined being in, waiting for our whole world to drop. We listen to other people make plans for their lives, for their family and we can't make any. 

Actually, we can make plans...but they are plans I have no desire to make.

Some people speak so matter-of-factly and "practically" about our daughter's most likely fate. But is it really practical to plan your daughter's funeral before she is even born?  

Honestly, it seems ridiculous. We've done so many things to preserve Lily's memory, but this is just one thing I cannot bring myself to face. Others in the same or similar situation find comfort in making all the arrangements beforehand. I can't even allow myself to really think about it. Preserving her memory is something I can do...planning to never physically see her again is something I cannot. I can't even utter the words out loud. I can't seem to think past the moment where they will take her away from me because it just seems so...ridiculous.

I cried almost all day on Friday...off and on, I couldn't stop. Just quiet tears all day long. When I got home though, there was a package waiting for me. Months ago, my aunt asked me for some shirts and material because she wanted to make a blanket for Lily. I gave her Jason's favorite tshirt, a few of Ted's favorite onesies, one of my beloved camp shirts and my flower girl dress from when I was little. It was so special to open it, especially after such an emotional day. I know my family is praying for us all the time, but to have this to hold onto...every time I look at it I will be reminded how much my family loves Lily.
On Saturday, my sweet friend Lisa gave up her morning with her family to take our family pictures. Even though they didn't go quite according to what I imagined (is that ever possible with a toddler?!), I absolutely cannot wait to see how she captured our little family. I know we will cherish these photos of our family of four.

This was the last "To-Do" on my list for Lily. I'm so happy to have all of these ways to preserve her memory, but it's still so bittersweet. Normally, I would never even consider family pictures when I am eight months pregnant, swollen and uncomfortable, but that is our reality and sometimes...most of the time, it really sucks. I was emotional the rest of the day thinking that October 27 was exactly one month away.


But again, things seem to happen just when we need them to. Our friends were having a family BBQ on Saturday afternoon. Jason didn't really want to go and I really wasn't excited about it either (sorry, friends). We both kept mentioning that we really didn't care to go. Our friends who were hosting have a son Ted's age and, honestly, we sucked it up and went so they could play together (again, sorry friends hosting the BBQ, but we've become hermits).I used to love gatherings like this, now I really hate being in large groups. I stayed close to Jason. At some point I looked up and my sister, brother-in-law and kids were there?! I had just seen her the night before and she didn't even mention the BBQ. They had all been working and planning for months to give us this beautiful quilt everyone contributed to for Lily. They also brought items to donate to Ryan House, for families in need of pediatric hospice care. Jason and I had no words, just more tears. Again, something we will cherish forever to remind us how much everyone loves our sweet Lily. 

My heart was so grateful...it was exactly what we needed at that exact moment we needed it. 

And, of course there is this sweet boy, who fills my heart with so much joy I can barely contain it. I am so thankful that he will know his sister through all these amazing keepsakes. As much as our hearts ache these last few weeks, we are constantly reminded how blessed we are with the love and generous spirit of family and friends. 

"Thank you" is no where near enough.



Monday, September 22, 2014

Perfect peace

35 weeks...

There are days where this all feels like a cruel joke. Lily flips and turns and literally shakes my whole being with how strong she is. How is it possible that in six weeks or less that will all go away? 

This morning Ted was sitting on my lap drinking his milk and Lily was going crazy jumping around! She was actually lifting Ted up! How can she be so strong inside of me and most likely not survive more than a few hours outside of me? 

We've known of Lily's diagnosis for 16 weeks now and honestly, it still doesn't seem real. 

Around 32-33 weeks, I finally started showing. I was so heartbroken by my small belly, desperately wishing she would grow as she should, but now people comment and ask questions and I wish I could be more invisible again.

Ted and I were at the grocery store today and the lady in the checkout asked me how much longer..."Six weeks," I say.

"Wow! You are tiny!" Immediately tears start to sting my eyes. I'm not tiny, my baby is. 

Or it's someone asking about the age difference between Ted and Lily..."18 months," I say.

"Wow! You are going to have your hands full!" Tears sting my eyes again. But I'm not going to have my hands full. 

I would give anything to have my hands full.

Nesting when you have a fatal diagnosis looks a lot different. 

With Ted, I was busy cleaning out our house, decorating his room, organizing all the bins of toys, clothes, diapers, installing a car seat, etc. I exercised every day, spent time with friends, full of the "pregnancy glow" I had longed for forever. 

With Lily, I am just praying I've thought of every single way to preserve every single moment we have with her. 

We almost have all of our "To-Dos" completed. It brings a mixture of peace, sorrow and still disbelief.

Our To-Do's:
1. Contact Now I Lay Me Down to Sleep
2. Hand/Foot molds and ornament provided by String of Pearls
3. A few hand-made outfits from two of the sweetest Etsy shops (Pearly Pea and Sew Delighted Boutique)
4. Build-a-Bear with Lily's heartbeat for Ted
5. Banner with her name for pictures and Ted's room
6. Scheduled family pictures
7. A crocheted blanket made by one of my dearest friends
8. A prayer shawl my aunt sent me made by women from her school
9. Knit (many) beanies to go with her sweet outfits
10. Get Ted a "big brother" t-shirt



Amidst all of these To-Do's, I am constantly praying I won't have any regrets. 

Jason and I have been praying for peace throughout all this and for the most part, we have felt it. We keep asking God that we will be at peace with when she is born, how she is born, who is there, how long we get with her. 

My mind keeps wanting to be more specific with my prayers, but I know the most important thing is for Jason and I to feel God's peace and know that no matter what, she is perfect and she will come to us in His own perfect way.

35 weeks with Lily

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.