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 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 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 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.