Trever sent a note to someone we know who's son died a few years ago.  Dan is Trever's brother's good friend. I remember so clearly when Jack died.  I was devastated for them.  Hearing about someone's child dying in a situation where they had little to no time to realize what was happening is terrifying.

They sent us a note not long after Abby died.  It was touching.  I don't know the family, but they sent their love and I am so thankful for that.

Here is Dan's response to Trever's note:

Trev- The thoughts go both ways, welcome to a sucky club. Kristen and I got lucky we got into a great support group early on and found it was a great and much needed outlet. The facilitator used a great analogy that everyone there was a zebra amongst a large group of horses, in that we could run the same and act the same, it's just that others could not see our stripes. Keep all those great memories close as there will be nary a day that goes by that you don't think about her or are reminded of what could have been. Choose to celebrate with those close to you and commit to stay strong together! Understand your limits, look out for tricky situations and have a back up plan just in case it gets to be to much(especially around the holidays) feel free and give me a shout if you just want to talk

Words of wisdom.  Wisdom that no one wants to have.  A membership in a sucky club, so true.

October 31st, 2012

I had such a nice evening with a good friend last night.  We just sat and talked (and drank tea... which her husband will be happy to tease us about as we grow old and continue this habit).

It was nice to talk with her about different aspects of this grief process.  We also talked about some of the challenges that have come with this journey.

We talked about the awkwardness that people around me are probably feeling.  Should they or shouldn't they talk about Abby.  Should they be careful to not use her name.  Can they ask questions.  Will talking about her bring me sadness.

She watched a video that I posted (that came from our pastor) about how grief is like a brick in your pocket.  It feels very heavy at first, but after a while (a different amount of time for each person or circumstance) you get used to the weight of the brick.  But from time to time you will be more aware of the brick and it's weight.

My brick doesn't always feel extremely heavy, but I am always aware of it.  I have a constant inner dialog that reflects on what I am doing during my day and points out how the situation or my place in the situation is affected by my brick, by this journey, by my grief.  It's not always negative, and I'm getting more used to the inner dialog.  I think as I get into new habits and start to get comfortable there is less to be "talked" about in my head.

But no one can bring Abby up in conversation and catch me at a moment when she wasn't already on my mind.  I'm always thinking of Abby, and I love to talk about her.  I wish I had more memories to share, more moments to cling to.

I was just on Facebook and saw the picture that our friend Amy posted just after Abigail was born.  I loved looking at that pic and remembering that precious moment when Trever and I could hold all four of our kids in our arms.  I loved reading the comments that people had made on the photo.  It reminds me of the miracle we were given to have Abby born alive.

I don't feel jealous of people with healthy children, well at least not jealous in a negative way.   But I do tend to feel jealous of people who get to have more than one day with their child who has Trisomy 18.  It's selfish but true.

Looking at that picture reminded me of how blessed we were.  I know that so many families don't even get what we enjoyed.  And it probably doesn't matter how much time we would have had... it never would have been enough.

Thank you Sweet Abby for spending time with us.

Natalie talked with me about Abby again today.  How she misses her, how she wishes Abby was still with us.

I've been worried.  Do we know how to support Natalie.  Is she thinking about Abby more than I know, and feeling sad about her?

Today I feel calm, reassured that she is fine.  Natalie has an amazing memory, and people are very important to her.

When I ask her what she is thankful for each night it's super common for her to answer "Disneyland".  And she will say "remember the .... ride".  We went there two years ago.

Before we unpacked our Halloween decorations she told me her fears about a skeleton/ghost guy that we have.  We don't have pictures of him and she hadn't seen him since last Halloween.  She described him perfectly and also described her behavior from last year when he scared her.

Natalie has a great memory.

I love that Abby will hold such a special place in her heart even though their time together was so brief.  I wish we had kept the kids at the hospital more, that Natalie had been able to cuddle up with her all day.  Hmm, hindsight.

I always tell Natalie that I agree, I wish Abby was still with us also.  Today I remembered to tell her what a wonderful big sister she was for Abby.  She was, and I hope I remember to tell her that more often.

October 30th, 2012

I remember when I went through our miscarriage, almost 5 1/2 years ago, a friend shared the different emotions I should probably expect to experience.  Anger was on the list.

I thought, "what do I have to be angry about".  Logically I understood the miscarriage.  I learned that logic and emotions don't always work together.

It still shocked me when I found myself angry.  It hit almost a month after the start of the miscarriage.  What shocked me was that I found myself angry about the continued blood tests.  Really angry.  I wanted the process to be done, I wanted to at least recapture my physiological balance.

And I did, eventually.

Lately I find myself being angry at my body.  That my body can't/won't do the things I yearn to do.

I'm frustrated that my clothes don't fit.  That my tummy is so postpartum.  Did I mention that my clothes don't fit.  Seriously, I have two pairs of pants that fit... and one of them is leggings, so I don't know if that counts.

I think I might be able to live with those parts if I was able to feel phyiscally strong.  But I still can't run.  Each time I am so uncomfortable.  I feel like I fell on my bicycle yesterday.  (Like onto the bar of my bicycle... and I was riding a man's bike.)

So I walk.  But it's boring.  And what is almost worse... it's hard work for me right now.  I feel like a couch potato!  No fun.  In all honestly I have been a bit of a couch potato for the last 6 months.  So I probably deserve some of this.

But I want to run, I want to feel like I'm pushing myself.  The two times I've decided to "work through the pain" I've ended up having trouble physically getting through my daily tasks for 3-4 days.  It leaves me bitter. It's a vicious cycle.

A friend told me today that I need to give myself a break.  I know she's right.  I need to just love myself (even all of the extras of myself).  It's only been 3 months.  Wow, 3 months feels like a lifetime right now.

I also know that I am probably letting myself be distracted by my physical limitations.  It's tangible.

So I will try to give myself a break, I'll work on that.  For right now I'm still feeling angry at my slow recovery.  Angry at my inability to control the situation.

But that's life, and I think I would be starting to "get it" by now.  Clearly I'm a slow learner.

October 28th, 2012

Trever and I spoke at church today. Listen here.  It was nice to focus on Abby, to talk about her.  To think about the story and how it unfolded in our lives.  To think about the wonderful gifts we have received through Abigail.

I wish we could have sat up there and talked for hours.  Telling so many more details.  Talking about the joys of being pregnant with Abby.  Reliving the amazing moments after she was born, and then the hours that we shared with Abby in our arms.  Talking about the family and friends who held us up with their energy and eagerness to meet Abby the night she was born.  Their commitment to waiting with us at the hospital is so beautiful.  They got the chance to meet Abby and celebrate her life.  They would have been there to embrace us if the story had been different.

All the visitors, the joy and smiles that filled our room.

The moment when we knew the story was changing. Our neighbor dropped by just before we had the chance to call or families and invite them over to say good bye.  She so graciously cried with me and then went home to gather our children so the grand parents could come alone.  Before she could get home we had changed plans and had all the kids come to the hospital.  I'm so thankful we made that decision.  I'm so thankful we have a neighbor who didn't think twice about adding our three kids into her fold for the evening if we needed her to.

I wish we could have just stood there and talked.  It's different to stand in front of a group that doesn't know the whole story.  To share whatever details come to mind, knowing it's all new information to the listener.

When I listen to the service I realize that we may have focused on the joys, we may not have embraced the pain that goes with this story.  But that is how it is for us, we're generally on one side or the other.  And we spend so much less time thinking about the pain.

I think I'm actually at a point where there is more sadness than pain.  Sometimes I miss the pain, because I feel closer to Abby at those moments.  This is the confusing journey of grief.

October 25th, 2012

I don't live by a calendar.  Most days I'm not sure what day of the week it is much less what day of the month.  So I keep getting surprised by these "month-birthdays".

3 months ago I was holding my little girl.  We had told our friends we didn't want visitors, but right around this time of night we changed our mind.  We held her and knew that the end was coming, but we were able to smile because she was still with us.  And we had such a great time celebrating Abigail with all our friends.

 This picture was taken at noon.

Such a special moment sitting outside and feeling the warmth.  

This picture was taken around 7:30pm.

My heart aches as I remember our little angel.  My chest feels like a dam that is about to burst.  Looking at pictures and knowing the story is so difficult.  She just looked so tired by this time of night on the day she was born.  Her body had been working so hard, she looks a little like an old lady.

The top picture is one of my very favorite.  I find myself mesmerized just staring at her.

The bottom picture is one of my fondest memories with Abby.  Nothing clouded our time with her during our moments outside.  And there was something surreal about going outside, about being part of this world with our little girl.  We were so thankful to have a moment to show her God's amazing creation on Earth before she went to be with Him.

I believe in God, and I believe in life, and I believe in Heaven.  And I believe there are so many things that we don't know... that some people like to think they know, but we really don't.  And I wonder, if reincarnation works in harmony with God's plan... did Abby just reach her last stage of life?  Wouldn't that be the ultimate life?  To know you were wanted, then to know that your parents wanted to give you whatever life you would naturally have.  In a sense she was chosen twice.  Then you get 25 hours surrounded by love.  And in such a peaceful way, you get to drift off and leave this world for the last time.

What a gift.  A gift for her, and a gift for us.  Happy 3 month birthday my sweet girl.

October 24th, 2012

I have't been able to sit and write for awhile.

My lack of writing partially comes from the intensity of going to our first Grief Share group.  The other part comes from feeling... hmm, I don't even know how to say it.  I'm not overwhelmed.  I'm not detached.  But I can feel the walls up around my emotions, and I can feel the walls starting to crack.

When I think of Abby today I can literally feel my body and mind starting to weaken a bit.  But not in a bad way.  Ahh, I just can't seem to find the right words.

I guess I'll stop trying.

I know I'm having trouble writing mostly because my mind is still processing an experience that has left me a little bit bitter, hurt and confused.  But I know I can't "talk" through it on here.  And I'm the type of person that has to process something and really try to work through it or I get mentally stuck.  (Which is one of the main reasons I journal/blog).

I will say, after all the anxiety leading up to the first Grief Share meeting, that was then cancelled, I'm glad we followed through and went.  My guiding principle is that it never hurts to give something a try, especially something with a helpful/reflective/learning/supportive platform.  So we're going to participate in the Grief Share group for the full 13 weeks.  We might learn something, we might not.  But we're not going to be in a worse place.

I can so easily talk about Abby with just about anyone at this point.  And I love to talk about her.  I've tried to hold back in a lot of situations mostly because I know it's an uncomfortable topic for people.  But I am getting better at just being brave and embracing the moments when it's normal to mention her.

I was shocked when it was my turn to introduce myself to the group and I hit a brick wall of emotion.  I could barely say my name and who I was grieving through the tears and the catch-your-breath thing that comes with crying.  Almost every time I looked at Trever his eyes were red and watery also.  There are a lot of people around us who have experienced loss, but there is something about being in a room with people who are actively trying to learn about their grief that made it okay to be so vulnerable.

Last week I wouldn't say that we learned anything.  But we gained affirmations about the road we are taking.  We were reassured that this process will take time, longer than most people (even myself) will anticipate.  We feel "normal" in what we've gone through (grief wise) so far.  And we were reminded that the emotions will continue to come in waves for the rest of our lives.  Grief doesn't go away, the love that we had for our daughter, and the hopes that we held when we found out we were pregnant will have an impact on us for the rest of our lives.  There is good in that, there is comfort.  I'm thankful that my sadness at the loss of Abigail is always accompanied by thankfulness for having the chance to grow, nurture and love another child.

"If there were no love, there'd be no grief." Zig Ziglar

October 18th, 2012

It's amazing to me how life falls into place.  My friend Beth sent me a link to a website (http://trisomy18journey.org/Abbys_Story2.html)  for a little girl, named Abigail, who died from Trisomy 18.  She sent it to me before Abby was born.  I'm not positive if I looked at it at that time.  I remember we talked about it and what Beth had taken from the story.  So I think I just listened to what Beth told me more than investigating.

But I kept her email with the link in my inbox.

And tonight I decided to read the story.  Sometimes it's nice to feel connected to someone with a similar story.  I remember from talking with Beth that there were strange similarities... mostly that their little girl was named Abigail and they had an older son named Nathan.

I loved Abigail's story.  I found comfort in feeling connected to another family that embraced their daughter with love and helped her to live the life she was given with as much comfort as possible.

Then I went over to the mom's Grief Journal.  Just her description of the grief process rang true to my ears.  Here are some of the things in the section on "The Path to Healing, A Journey Through Grief":

I found that keeping a grief journal - writing down my thoughts as they came to me and processing the events and emotions of my life - really helped me deal with my grief. In looking back at it, it really illustrates for me the strange nature of grief: that it is NOT a steady uphill climb but is more like a wild ride on a rollercoaster. The ups and downs are tiring to read about, and they were exhausting to experience. 

All of these things helped me do my grief work. Many people say that time heals all wounds, but that's not true. It's what we do during that time that heals us. For sure, we can't shortcut the time, but time alone won't do it. We must work at our grief, thus the term grief work. What does that mean? It means feeling the emotions, the pain and sadness, and not denying the feelings. It is often easier to try to avoid the pain, but doing our grief work is what strengthens us to help us heal.

As I have recently received concerns about my grief process it was so nice to feel affirmed that I am normal. I have very important people in my life who support my process, and affirm that this is what the process looks like.  It still feels like a weight is lifted to stumble upon this site.

I haven't read her individual postings in her grief journal.  I'm sure I'll end up there a different day (right now I need to get myself into bed since I have a sick kiddo who will surely be waking me up a few times tonight).

One other excerpt from Mindy, the one that initially encouraged me to look past the birth story:

Shortly after losing Abigail, when I first wrote about the blessing God had given us through her, I never imagined the full extent of the blessing we would receive. Neither did I imagine the depths of pain and grief I would need to go through in order to receive that blessing.

I am now much deeper, much kinder, and even much more joyful than I was before having Abigail. And I am thankful to God for this experience and all it has taught me. But the road to where I am today was very long and very hard. After the initial shock and elation of meeting my daughter wore off, my real grief journey began.

I have described it best in The Journey, which compares grief to a long trek across a huge mountain range. My Grief Journal recounts what my life has been like since saying goodbye to Abigail: the many ups and downs I have experienced as my heart is slowly healing.

If you are here as a friend, your support during the "after" part of the journey will be the most important gift you can give.

And if you are just beginning this difficult journey yourself, I am here to tell you that there IS joy after grief.

More joy than you can imagine.

It's nice to be reminded that this is a journey, and there is hope at the end.  And that life is filled with blessings, the ones I realize now and the ones I still get to learn about.

Some days I struggle with the idea of answered prayers.

It's easy to question whether God is listening to all of my prayers.  To see the answers to my prayers.  There are times that my prayers seem so simple, yet feel unanswered.

And it's easy to pray for something and then forget to acknowledge the answer.

It's easier to question God's presence in life than it is to give credit.

When I find myself wishing we had more time with Abby it's hard to see her 25 hours of life as the answer to my prayers.

But those 25 hours are the miracle that I can come back to for the rest of my life.  It was exactly what I had asked for, more than I had actually asked for.  I'm sure I could go back and find our actual prayer written down.

I know I asked for strength, for peace, for moments being able to hold her and kiss her.  To look into her eyes.

My head is spinning right now as I realize how clearly my prayers were answered.

When we would watch her heart in the ultrasounds we were shocked by what we saw.  Trever was amazed that she could even sustain herself during the pregnancy.  She wasn't really sustaining herself, I was doing the work for her.  God was giving us a gift.

I'm jealous of the families who have more time with their children who have Trisomy 18, but I also need to recognize how many families don't get to experience what we had.  Each story is written differently.  And I'm so thankful for ours.

"A moment on the lips, a lifetime on the hips".  That is the concept I think of with this experience.  Although our time with Abby was so brief, it will be with us for our lifetime.

It was about a year ago that we conceived Abby.  What a year.

October 16th, 2012

I'm spending some time (probably lots of time in the end) going back and updating our family blog for this year.  I haven't added anything all year.

It's strange to go back, starting in January and revisit our year.  Early in the year, when we didn't know what was ahead.  When we knew we were going to be parents to 4 children.

Then in March, seeing the pictures from the morning of March 12th.  We celebrated Nathan's birthday, and then headed off to the ultrasound.  That evening as I got in my car to go to the airport I got the message from the doctors office and I knew there was a problem.

"There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts, before this and after this" Unknown

March 12th was one of those moments for our family.  March 20th solidified that fact when we received Abby's diagnosis.

I'm sure if I had listened I could have heard the crack in my reality, in my hopes.

There were other defining moments too, but they happened more gradually.  Like the moment that Trever said to me that he used to explain that we were being positive about a negative situation, but he had started to realize that it wasn't a negative situation anymore.  That shift of perspective was so helpful.

Abby wasn't a "negative situation".  She was a child.  She was a gift.  She has shaped us as people.  She "pruned our friends and added new ones".  She blessed my heart and although I still yearn for more moments with her, I'm so thankful for being able to embrace her journey.

Going back and thinking through this experience in the terms of what was going on in our lives this year brings me some sadness.  But it's tempered with the joy I feel as I take a moment to reflect on the blessings we have.  The beautiful moments spent together as a family, raising these amazing kids.

October 12th, 2012

This week has been so wonderful.  I feel like I woke up on Monday feeling amazing.  A have mostly been walking around in a bubble of happiness.

I think the grief support group had really put me over the edge of anxiety.

Although our trip to Hawaii was really great, it also came with a lot of baggage/emotional stress.  We hadn't really been home long enough for me to decompress when I got the call about the grief group.

The meeting got cancelled.  I wasn't pleased.  I had fought so hard to prepare for the occasion.  Wasted energy.  When I decide to try it again I'm going to remember not to waste that energy.  And if it doesn't seem to offer me the support I need I just won't go again.

Through all the emotions: the ups, the downs the balance place in the middle, Trever has been amazing.  He is the quintessential partner.  We are in this game of life together.  It's nice to be reminded that he is my partner, my husband, my friend.  We are determined to be a team, to support each other and to continue learning about the other persons (as well as our own) needs.  I really like "us", and I know he does too.  It's awesome.

Natalie and I have been talking about Abigail a lot the last couple of days.  She pulls out the "guest book" and looks at the pictures.

It makes me happy.  I like knowing that my kids have a special place in their heart for their little sister.

Nathan continues to remind us that Abigail is in his heart.  That he doesn't have to be sad and miss her.

But he also agreed with Natalie (and us, of course) that he wishes she had stayed around.  Natalie says that she wishes Abigail lived with us so she could give her kisses and sing to her.

Natalie also wishes that I would have 3 girl babies and 3 boy babies.  Poor thing wants a sister so badly.  Makes me sad for her.  She is such a love.

Pictures

A few moments after we knew our time with Abby would be so much shorter than we had wished.
It was 25 hours more than we were sure we would have.  The most intense 25 hours I have ever lived.

The first picture of Abby.  Not so cute, but so beautiful at the same time. The only time we monitored Abby she was experiencing a decelerated heart rate during contractions (all of my kids have done that during labor). It left us uncertain of whether or not Abby would be born alive.  This moment, having her placed on my belly alive, was incredible.

 Such sweet and caring siblings.  Nathan is shielding her eyes from the bright light.  Natalie is feeling to make sure Abigail is warm enough. Her quilt went everywhere with her.  Now it goes everywhere with us.

Our last moments together as a family.  So glad the kids were able to come and say goodbye to their little sister.  They were all so sweet to her.  Makes me so proud of them, and so sad I don't get to see them help to take care of a little baby at home.

 Natalie stayed close to Abigail during this whole visit.  She tucked herself right in with whomever was holding her sister.  And she gave Abigail lots of kisses and love.

Taking a moment to show Abby our beautiful world.  I love this picture of Trever looking at her fingers holding his thumb.  He has such an amazing love for each of his children.

October 6, 2012

I think it's good to be in touch with my emotions.  (I think a break from them from time to time is good also.) I think I need to be in touch with myself, really feeling my emotions (not just thinking about them) to create healing.

Even believing that, it doesn't make the pain and sadness any more comfortable.

It's not easy to get through the days right now.  I'm never sure how much energy I have to give to my responsibilities.  I wonder how this year will affect my kids.  I wonder how much they notice?

Some days I'm the "yes" mom because I just don't have the energy to care to say no.  Pancakes for breakfast and dinner? Sure.  Lunch also? Why not.  A new toy, a snack from every store? Sure.

Other days I try to stop myself from only saying "no".  Because why does it really matter if they watch another show? If we have pancakes instead of something healthy? If we read extra books and stay up later? Some days I feel like the first word out of my mouth is "no", just because I don't have the energy to allow life to happen around me.

They are such great kids, I'm so afraid that I forget to tell them often enough.  Some days I'm working so hard to take care of my responsibilities, that I forget what my only real job is.  To love my children.

To embrace them each day, to fill their hearts with the belief that I love them.  And to honor my love for Abby by letting myself work through the grief.

And not to be a side note but I also need to love myself and my husband.

Some days it all feels like a big job.

I was invited to a grief support group.  I had just been talking to Trever, saying it might be time to look into something.  I'm a huge supporter of counseling, I just haven't gotten around to taking the first step.  This isn't exactly counseling, but I'm hoping to learn something.  And I figure since this fell into my lap just as I was thinking I might need it, then I should listen.

That said, it's causing me a lot of anxiety. Each time I've thought about it, or talked about it I've had tears in my eyes.   I'm sure I'll feel better after going tomorrow.  Maybe the haze that I seem to be living in will be lifted.

I know these waves of sadness come and go.  When I'm being knocked down by a wave it's so hard to imagine being above water again.  I can't remember the last time I actually felt happy.

I am writing about my current emotional state as if it's something I begrudge.  It's not.  It feels real.  It feels authentic.  So I kind of find comfort in being here right now.

I like spending so much of my time thinking of Abby.  Feeling my love for her.  Feeling the sadness of missing her.

I also like to smile, and feel present in my daily life.  So I know I'll be happy to embrace feeling a bit detached at some point too.

And maybe some day I won't sway between deep grief and detachment.  Maybe someday I'll feel like I'm actually living in balance.

October 3rd, 2012

I can't seem to really connect with my emotions today.  The physical feelings are intense, I've spent most of the day feeling like I'm carrying a 50lb pack, not to mention just wanting to be in bed.

But I can't really put my thoughts/emotions into words, so I'm going to write about other aspects of my day.

My highlight?  When Nathan crawled into bed with us this morning.  He curled up next to me and excitedly said "Abigails blanket!" as he grabbed it and cuddled up.  We took it to Hawaii, I wonder if he actually noticed it was gone, or just realized this morning that he hasn't seen it in a week.  It was a beautiful moment.

As I go through these times/stages of grief it is obvious to me that my husband and I have two very different needs.  (Reference to The Five Love Languages).

He needs touch.  I need space.  It's a difficult dance.

I'm so thankful for our ability to (mostly) work together.  We've been through our share of stress during the past 5 years.  We've been lucky enough to learn about each other and learn to balance our completely opposite needs.  It's still not always easy.

I'm glad he needs touch.  I'm glad that he can give me some space.  I have no doubt he needs more touch just like I need more space.  But I'm thankful we meet in the middle.  If it was all about my needs I'm not sure we would know when to start touching again.  We might just get used to the space.

I look forward to the day that I can relax again.  Not in the "I'm so uptight right now" sense, but in the "my emotions are so intense I don't have room for anything else" sense.  I look forward to the day I want someone's hands on me, rubbing my arm or my back as we stand close in a group of people.  I know Trever will be there when I'm ready since I work hard to still give the opportunity to show me love in his way right now.

The irony in my situation, my personality?  All I really want to do is lay my head in someone's lap and cry.  But not have any movement on my skin.  I want people around me, and I desperately want to be alone.

I'm thinking of going to a grief group this weekend.  It feels funny to be around "those people".  But I'm one of them.  I guess it's that uncomfortable reminder of my reality.

October 2nd, 2012

Trever and I just got back from a much needed vacation.  I had so many thoughts while we were away, I wish I had a laptop.

Right now I can't really focus on our trip, on the emotions that we experienced (all tucked in around our fun time with friends and much needed time as a couple).

I came home to find a note that a woman who is so dear to me is headed into surgery tomorrow.  9 days ago she found out that her breast cancer has metastasized to her brain.  Yesterday she met with her neurosurgery team.  Tomorrow she goes in for surgery to remove at least one, possibly more tumors.  I'm in shock.  I'm feeling numb.  I want to get on a plane and fly to Charlotte.  Now is not the time, but I'm keeping that option open.

My heart is already so heavy with emotions.  It wasn't the easiest week.  It's amazing when the emotional pain creates physical pressure on your body.  I'm sure that emotions are always affecting me physically, I guess it's just amazing when I am able to realize it due to decreased distractions.