March 30th, 2012

A response (to a message I sent) from a dear friend:

Abigail has already enriched my life in ways many of my childhood friends never have. I am more aware of death and what it means to me. I am more committed to candor. I am learning to be a better friend. I am a more prepared potential mother.  I am better. She has brought groups of people together. She has stimulated conversations between families and lovers. She has inspired strength, sadness, joy and many other emotions we may never know. And she hasn't even set foot on this planet. Abigail Adams eat your heart out. 

This is just my long winded way of saying I have yet again been reminded that I believe the greatest growth often comes from absence.  And although I regret the pain you feel and it doesn't seem fair for a life to end so early, I am thankful for you, your family, and Abigail. And the gift you are giving to us all. and for reminding us that life does not have to be long to be full and complete. Completion is not about time, but impact. Imagine what Abigail'simpact will be. (AME)

 I love a friend who can share with honesty, with candor, with insight.  

Right now I am also especially fond of any friend who communicates with me.  When it comes down to it, it really doesn't take much.  But it's somewhat shocking how few people know how to give even a little.  

Maybe it's as another friend wrote:

On a personal note, I am learning from this experience daily.  I am really good at supporting friends in need when there are acts to perform. But I don't feel as confident in knowing what to say.  Somedays the words flow, but other days I'm at a loss for words.  Seeing emails like this from you showing that just 6 little words 'how can I pray for you' make such an impact shows me that I don't always need paragraphs of support - sometimes the fewer words the better!  (BS)

 It's true, sometimes it's the little things that count the most.  I'm definitely guilty of looking for "just the right thing" to do, to give, to say... and ending up doing nothing.  I hope that won't be me in the future.

knowledge

I honestly, truly never wanted to know what this type of loss would feel like.  I still don't.  But I am hopeful that this experience will allow me to support someone else in the future.

March 29th, 2012

It's easy to think that just because I have good days means I'm going to be "fine" for the long haul.  Clearly that isn't true.

It's also easy to get worried when I'm having a difficult day.  How long will it last?  How often will it happen during the next 4 months?

I'm glad today was a "good" day.  It's a reminder that storms will come, but they will pass.

Unfortunately we  also realize we're not even at the "hard" part.  We talked a bit today about the choices ahead, the unknowns.  There are so many more details unknown rather than known.  That's always the truth when it comes to pregnancy, to life.  It's just that we've always been able to live in ignorance, blissful ignorance.

Not so much anymore.  Who has to think about a pregnancy not coming to term, about what medical options might be available if she does live through birth, about what funeral plans to make when she inevitably dies within the first year, and then the extremely obscure chance that Abby will live past her first birthday??????

How do you brace for the grief while holding on to hope?  With only a few flutter kicks to remind you that there is an actual life involved in all of this?

It's a double edged sword to have the knowledge about T18 so early.  I always said I didn't want time to prepare, I still think that might be a truth for me.  However, this experience shows me that I could never be prepared for the pain of losing one of my other children.  Abby is no less important, but this is the only life I will know with her, there aren't any illusions.  I hope this is the worst experience I ever have to go through with my kids.

How do you plan for the future?  We have a trip to Hawaii planned in September, when do we cancel?  Trever has his 20 year reunion on August 18th, only 17 days after her due date, will we be able to go?  Will we have Abby with us?  In the Big Picture these are unimportant details, but they add to the list of confusion for me.  I can't make any decisions about Abby, other than our choice to give ourselves a chance to meet her, for her to have a chance to experience whatever life is in her future.  I just want to be able to decide SOMETHING.  (Well, something other than what's for dinner... I'd rather be off the hook for that one).

I also realize (and maybe I've said this already, I'll probably say it again) I miss my "old self".  There are defining moments in your life when you are destined to change.  Each time a child has come into our lives has definitely altered me.  But this is different.  I already see the change in myself, I already feel a sadness that I have no idea of it's permanence in my soul.  It's still early in this game, oh so early.  I have hope that someday my mental dialog won't involve coaching myself through the day.  That I'll have moments, hours, days where T18 won't define me.

That's not to say that I don't already see the blessings that will arise from this experience.  I'm blessed that my relationship with my husband is either getting stronger or just showing it's strength.  He is amazing.  I'm blessed to know that I truly believe in the Lord and His ability to guide me through this (especially when I am open and honest with myself and others).  I'm learning to be confident in my right to my emotions.  I don't need to apologize and it's okay if I admit that some days just aren't so great.

These are all blessings that will serve me well in my life.

Most important I am blessed to honor this life growing inside of me.  No matter how painful and confusing it is, I am honored to be reminded of my servitude as a mother.

A message from a friend...

I want to make sure I hold on to some of the messages that we receive. I need to try to copy more of them into this blog. The messages we receive give us strength and fill us with love.  They are so touching, so important.

I truly believe there is a purpose.  I know you've said the same thing before.  but I was just sitting here thinking of you.  Your email makes me cry.  I love you.  I'm sorry.  I am already extremely protective of your little Abigirl.  She is special, she is loved, she is fragile, she is a fighter, she is sweet, she is an inspiration, she is a wonder.
 
You were chosen for this.  I believe it even if I can't understand it.
 
You are a wonderful mother to all your kids and you are already an amazing mother to Abby.  No matter how long you hold her in your arms, you will be a wonderful mother to her forever and always.  
 
Love you,
JH

March 28th, 2012

Last night I was talking to my husband about how I realized I am probably dealing with low level depression.  (Ya think?).  He smiled so compassionately at me... but with a look that said he already knew that.  Really?  Here I thought I was doing "so well".  Which I probably am, depression isn't a bad thing it's just an honest emotion.

So we also talked about how good it felt to be feeling a bit more normal.  As I laid in bed unable to fall asleep (which luckily hasn't been a problem most nights) it hit me... we've only had this diagnosis for 1 week. ONE WEEK.  This may have been the longest week I can ever remember living.  Really, one week?

We have such a long road ahead of us.  We haven't even reached the hard part, the painful parts.  Possibly caring for a child with intense special needs, and then losing her.  Or not even having the opportunity to give her care.

It's overwhelming, it makes me want to curl up in a ball and close my eyes.  I suddenly realize why people are motivated to terminate.  I'm still not, it's not even an option in my mind.  More honestly I realize that it is an option but it's not one I'm even tempted to use.  However, I get it.  I get the need to speed up the process.

I'm not always in this much pain, there are moments where I can focus on the joy.  I really do love being pregnant.  I love feeling Abby wiggle inside me, and Trever was able to feel her last night.  I love seeing my belly grow (it's finally starting to out pace by butt!)  Along with all of that joy I am filled with sadness. I find myself being so sad that this will be our last pregnancy, so sad that it's tarnished with grief.

Some days are just so much harder than others.  Maybe tomorrow will be more gentle on me.

March 27th 2012

It's amazing to me how quickly life seems to be going back to normal.  More accurately to our "new normal".  The understanding that our baby has T18 is never out of my mind.  It's the first thing I think of in the morning, it's the thought that is always on my mind.  But I'm able to move through my day, to function fairly well considering.

I'm tired a lot.  Some of that is probably due to the slight depression that I'm trying hard not to acknowledge.

I still feel a bit of anxiety when I'm out in public.  I'm starting to show more, maybe still not enough for someone to ask if I'm pregnant, I'm not sure.  But I realize I'm not sure what to say when the topic of the pregnancy will inevitably come up someday.

"Are you pregnant?"
Yes I am.
"How is it going????"

Hmm... kind of a loaded question.  How do I answer that?  For someone I'll never see again I'm sure I can give a simple answer. "It's great, thanks."

But what about the people who we'll see in the future?  The people who work at my son's school?  The people at the gym?  The people I will fly with for work? Won't it be more awkward to not say anything and then see them this fall (after Abby is most likely gone) and then have to tell them "She died.  Oh, but we expected it."  ACKWARD.

Role playing that out in my head feels a bit strange regardless of when I tell someone.  I just feel bad for the shock that they will feel, for the discomfort of not knowing what to say to me.  And honestly I think I'm better able to guide someone through it now than I will be in the future.

And I think Nathan's school should be prepared.  I was just realizing that I want to make sure he has a very compassionate teacher.  Who knows what next year will be like for our family.  We have no idea how long we'll be able to have Abigail with us, will she visit his school or will she be gone before he starts?  Will I be a heap of myself having trouble getting through the day?  What impact will my inevitable emotions have on my children?  Not just my emotions but Trevers and my parents as well?  Not to mention the kids own emotions of bringing a new baby home and the extra stress that may cause the family, and then the probable loss and the sadness, confusion they will experience.

Oh my, there is so much ahead of us and very little we can actually plan for.  No wonder I am so tired, no wonder I forget to even think about what I should be making for dinner.

March 26th, 2012

I have two photographers willing to be at the hospital for day of birth photos.  I pray that it works out for at least one of them to be there.  I don't want to induce, so I'm going to have to leave this detail to prayer.  She is due in the middle of the week.  Please, please, please, let her come during the week.

We'll be doing pregnancy photos also.  It'll be our first time doing them, how bittersweet.

I need to figure out who can be with our kids also, I want my parents to be at the hospital so they have the best chance to meet Abigail, and I want someone to bring the kids as quickly as possible.  Oh, the planning.  We haven't even gotten to the birth plan yet.

It's actually more important for me to start figuring out the plans for her death.  We have almost 4 months until she'll have a chance to survive but at any time up until then we could be meeting her.  Oh how I pray that she greets us with life in August.