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 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.

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

To Love a Person

Part of our wonderful 10 days in Iowa included an annual camping weekend with some dear friends. We have been getting together for one weekend of the summer for the past 6 years. It reminds me of my beloved summer camp I attended as a child, counseled at as a teenager, and directed in my early 20's. A week I looked forward to all year, and while I was in it always went by too fast.

I adore these ladies and their families. For some I only see them once a year...this weekend. Not nearly enough, but it will have to do being 1500 miles away. The weekend always goes by so fast...making memories that help me get from one year to the next.

This year was different because honestly everything is different. Even when things are the same, they are different. 

I was nervous about the weekend. I'm nervous about everything now. I don't know what I am nervous about. Maybe it's the first time I see someone after I've told them about Lily. Maybe it's a fear they will ask questions. Maybe it's a fear they won't. 

I know people don't know what to say because truthfully there are no words. No real words of comfort, not enough in "I'm sorry", so I get that people have a hard time saying anything. The best thing anyone has said to me came from my friend Jeff this weekend. He simply said, "I don't know what to say to you, but I want you to know I don't know what to say." It takes courage to say anything and it meant everything that he acknowledged Lily in this way.

There are moments I just want to feel normal again. I knew that seeing my dear friends was going to be tough, but I knew they would be exactly what I needed them to be this weekend. 

As always, we laughed together. We told silly stories, made tie-dyed t-shirts, looked on in amazement at all the little people we created playing together. They were exactly what I needed them to be.

We also cried together. We held each other close and they all listened as I talked about Lily. My sweet, sweet girls gave me a beautiful gift that I will cherish forever. A beautiful necklace to always remind us of Lily. Lily flowers (of course), a pearl for her purity and beauty, an opal for October, and a sweet little "L". 

I know it will be something that people will see and they will ask about it and it will be my opportunity to share Lily with anyone who asks. 

Six years we have gathered, each year a little sweeter than the one before. John and Mandy graciously open up their hearts and their home to us every year. And here, this year, they thanked us. Thanked us for making the effort. Thanked us for making their summer so special. If they only really knew what it means to me to go there every year. If they only knew how much I need that weekend every year, but especially this one. John shared this (below) with us about what it means to love a person and a place. I do believe the only thing that makes the place so special are the people that surround it. As he read, it seemed as though he was reading my inner most thoughts from the depths of my soul.

People may wonder or even ask why Jason and I are choosing life for Lily knowing what pain and heartache lies ahead. My feelings for Lily are the same as my feelings for Ted and, God-willing, any other future children. This pretty much sums up how I feel about this sweet little soul I have the honor of mothering:

The Pine Island Paradox
Author Kathleen Dean Moore

I stretched my back and started two lists.

What does it mean to love a person? What does it mean to love a place?

Before long, I discovered I had made two copies of the same list.
To love - a person and a place - means at least this:

One. To want to be near it, physically.
Number two. To want to know everything about it - its story, its moods, what it looks like by moonlight.
Number three. To rejoice in the fact of it.
Number four. To fear its loss, and grieve for its inquiries.
Five. To protect it - fiercely, mindlessly, futilely, and maybe tragically, but to be helpless to do otherwise.
Six. To be transformed in its presence - lifted, lighter on your feet, transparent, open to everything beautiful and new.
Number seven. To want to be joined with it, taken in by it, lost in it.
Number eight. To want the best for it.
Number nine. Desperately.

Love is an anchor line, a rope on a pulley, a taut fly line, a spruce root, a father teaching his daughter to tie a bowline knot, eelgrass bent to the tide, and all of these - a complicated, changing web of relationships, taken together. It’s not a chance, or a dream, or a romantic novel. It’s a fact: an empirical fact about our biological existence. We are born in relationships with people and with places. We are born with the ability to create new relationships and tend to them. And we are born with a powerful longing for this relation. That complex interconnectedness nourishes and shapes us and gives us joy and purpose.

I knew there was something missing something important from my list, but I was struggling to put it into words.  Loving isn’t just a state of being, it’s a way of acting in the world. Love isn’t a sort of bliss, it’s a kind of work, sometimes hard, spirit-testing work. To love a person is to accept the responsibility to act lovingly toward him, to make his needs my own needs. To love a place is to care for it, to keep it healthy, to attend to its needs as if they were my own. Responsibility grows from love. It’s the natural shape of caring.
        

Number ten, I wrote in my notebook. To love a person is to accept moral responsibility for its well-being.

My cup (still) overflows

Ted and I went to Iowa for 10 days to see my family and friends. It could not have come at a better time. We already had the trip planned before we learned about Lily's diagnosis. It was hard to leave Jason for a week, but he knew I needed to see my family. 

I had a lot of anxiety before we left. Basically, I'm anxious and worried about everything now. I was terrified something might happen and Jason wouldn't be there. I was afraid to face anyone without him by my side. I was worried I would break down the minute I saw my mom. 

I've said before I have an amazing family, but I never knew how amazing until this past week. I didn't really know how anyone would react. We've never had anything like this happen in our family. We've been abundantly blessed with dozens and dozens of grandchildren and great-grandchildren and as far as I know not even one miscarriage in all of these. We know how lucky we are too and we don't take it for granted. Everyone knows someone or knows someone who knows someone who's been through losing a child. It's just never happened so close to us. 

My family did everything right. They showered Ted and I (and Jason when he joined us) with love, prayers and support. They asked about Lily and my pregnancy. Being able to talk about Lily means everything to me. This isn't going away. As much as I would like to pretend to be "normal again", that is not reality. I don't want people to ignore what is happening to me or to our family. 

I'm not afraid to talk about her because I want people to know that she is very much alive right now. She is strong and she lets me know all day long that she is still with me. 

Ted spent the week playing with all of his sweet little cousins. He got lots of belated birthday gifts and just because gifts. We went swimming at an indoor water park. We had a picnic and played at the Splash Pad across the street from the house I grew up in. We saw childhood friends, high school friends and college friends. We went to cheer on the Iowa Cubs. We went to the lake and had breakfast at Great-Grandma Millie's. We played in the yard and read stories with Grandma Mary and Papa Lynn. 

It was the hardest goodbye since the day I moved to Arizona. Knowing that the next time we go home we will be different people again. The thought of most of my family never meeting Lily is devastating. But the worst, is thinking about my mom and dad...that they might not get to meet their first granddaughter. It makes my heart ache in ways I never imagined. 

When I think about these things that I have no control over, I get so overwhelmed with grief. So I try to focus on all the blessings. I try to focus on the memories that I have with my family while Lily is alive in me. Her trip to Iowa was filled with so much love, so much fun and so much peace.

For that I am truly grateful.