April 30th, 2012

I don't know why it continues to shock me how each day is different, life has always been that way.

Today a friend sent me a link to a blog for a little girl with SMA (Spinal Muscular Atrophy).  She is 5 months old, she has been given a life expectancy of less than 2 years old.  SMA is a genetic disorder that has no cure, it's currently the #1 killer of infants.  But nobody seems to know about it.

The blog brought two things to my mind.  I'll write about the less pleasant part first (I guess if you ask me if I want the good news or the bad, my answer is usually to start with the bad... I like to end on the upside in life).  I wonder if there was more genetic screening and then some genetics tests that could be done during pregnancy if that rate would change?  It wouldn't change because they could do anything for that child, it would only change because parents would have the choice to avoid the pain associated with loosing that child.  The pain that comes from walking an uncertain path with a defined ending.

That doesn't seem to be the parents reasoning for the testing, their focus in just on parents making choices (whether to use In Vitro instead of the old fashion way).  Unfortunately most blood work is done after you already know you are pregnant (although there are those planners who probably do testing when they decide to start trying for pregnancy). But I feel certain that the reason SMA is the biggest killer is because when a chromosonal problem is known about during pregnancy 75-90% of parents choose to terminate the pregnancy (I've read that it's more specifically 85-90%).  The parents only had a 1 in 6400 chance of having a baby with SMA. Trisomy 18 occurs in 1 of 6000 births.  But that number is off if you consider the number of terminations.

My heart breaks for any parent that has to face the loss of their child.  I think I'm getting a bit off of the point as I continue to ramble... so onto what I love about the blog.

This family has embraced the days that they have with Avery.  They have a bucket list for her.  They post and focus on the items that she has crossed off of her bucket list (getting picked up by a firefighter is definitely a highlight :) ).  It's great.  The writing is upbeat and funny.  I'm sure they face pain, I know they face sadness.  I love that they are also choosing to let her really live and embrace her life.  Here are some quotes from the blog:

Up Next:
Whatever I bring to life, because I don't have time to wait for life to bring anything to me.


Don't forget to share my story with everyone you know!  But make sure when you tell people about me, you tell them I'm not dying, I'm living...and they should be too!

Such powerful and important words.  I can't wait to apply those words to my life so often that they become a natural mantra.  Thank you to Avery and her family for the important lessons.

Just some thoughts...

I decided I needed to add a disclosure to the start of this blog.  When we found out that our baby girl was diagnosed with Trisomy 18 I knew it would be helpful for me to keep an journal.  Writing out my feelings helps me to process.

Since life is busy I decided to take the easiest route and start an online journal.  I figured a blog was the best format because I want to be able to publish this into a book that we can keep for the future.  I've already found it interesting to read back over some of my posts, and I know I'll do more of that in the future.  I really wanted to have an accurate account of what this stage in our life was like.  It's all been so overwhelming that I think I wouldn't do it justice to try to recall it accurately.

I'm hopeful that my kids might want to know more about their little sister someday, and possibly want to know what this experience was like for us.  I would love to have a journal from my parents, something that showed what the experiences of my early years were like for them.  Of a hardship especially.

After keeping this blog for about a month we decided to share it with our friends.  That wasn't the original goal, but I think it has been interesting for a lot of people and actually had an impact on some.  I'm thankful that Abigail can impact people with the time that she has with us.

Now that this is public I am also hopeful that it might shed light on this path for someone in the future who may encounter a similar diagnosis.  Making the choice to give their child whatever life is ahead is not easy.  Making a choice to terminate the pregnancy isn't easy either.  Neither option is without pain, there is no "easy out".  What I would really hope is that families are given more encouragement to take some time to make the decision and then strongly encouraged to seek counseling for whichever path they choose.

I don't write for anyone by myself, so I try not to edit.  I want this to be truthful and translucent.  I want to look back and acknowledge both the pain and the happiness.  Trever and I both believe that life is wonderful, and that includes the highs and the lows.  We also believe that we get our strength from God, and that we can learn lessons from every situation.  Our biggest goal is to be true to how we feel, at the same time keeping our focus on all that we have to be grateful for.  (As a side note, it NEVER helps when someone tries to remind you of this... it has to come from the inside).

We're so curious, excited, scared, anxious and thankful to see where this journey carries us and our family.

April 29th, 2012

I love that when I wake in the morning I have no idea of what the day will hold.  It's an unopened present with so many possibilities.

This morning we enjoyed breakfast with some very special friends from Wenatchee (they had spent the night). And then we headed off to church.  The kids all stayed with my parents (mostly my mom who got to enjoy all 3 of them falling apart... she sent us a text encouraging us to run while we could.  We brought her a coffee and lots of appreciation).  It gave Trever and I a bit of time in the car together.  Time alone with my husband is always treasured.

I was cranky.  I wasn't really enjoying a good vibe during the morning.  As we were getting out of the car Trever said he thought this was going to be a good day.  I have walked away from each church service at our new church with a message for my life, for my faith, so I figured this was a good place to turn my mood around.

As we started singing my thoughts were drawn to what songs we would choose for Abby's funeral.  I want something encouraging, upbeat, joyful.  I don't want a service filled with sadness or too much seriousness.  So my mind was already feeling a bit heavy.  Then as we started the 3rd song, "It Is Well with My Soul" one of the musicians told the background story for the hymn.  I knew the song already but not the story.  Basically the writer has gone through great challenges, he lost his only son, then the great Chicago fire ruined him financially.  Later he was retained on business so he sent his wife and 4 daughters ahead of him to Europe.  The ship sank, his wife the sole survivor in the family.  As he made the voyage himself to reunite with his wife the Captain informed him when they were over the spot where his daughters had drown.  He went back to his cabin and wrote the poem that was later turned into the Hymn.  He went on to have more children and created a life of giving with his wife, moving to Jerusalem and helping to found a group that served the poor.

The story so touching, and the song so beautiful.  I was sobbing.  My face literally drenched with tears.  Hearing about his sadness and triumph allowing me to feel my own.  Trever went and got me some napkins at the end of the song (I really need to learn to have some in my purse).

Next our pastor asked for any prayer requests (something he does irregularly).  The first person asked for prayers for her friend who just found out that the baby she is expecting in 2 weeks has arms and legs that did not develop, but they don't yet know why.   The next woman asked for prayers for her sister who was scheduled the next day for a high risk c-section.  Her last baby died 2 days before birth, can you imagine the fear she is experiencing right now?

By this point I was flooding my face with tears again (and I was stifling the uncomfortable giggles that I get when crying in public while also thinking "are you kidding me?????) and Trever was starting to join me.  He mentioned to Pastor Rhyan that he could share our story (did I mention we were in the front row?  good day to blend in). I'm so thankful that we had already shared our story with Rhyan.  He did a beautiful job of telling our story, of recognizing that Abigail isn't expected to live but we don't know if that means she'll die before we meet her or that she may enjoy life with us for some time.  My favorite part was when he encouraged people (most of these people we don't know as we are super new to this church) "to tell us they love us, but not to try to say something helpful.  Because what could be helpful?"  I actually laughed, and loved him a bit more at that moment.

The rest of service was just as touching (Rhyan actually showed a clip from Brian Reagan, one of our favorite comedians... see we were meant to be at this church).  And at the end we were engulfed by wonderful people.  The stories that we heard were powerful.  My favorite moments were when people simply introduced themselves and said they didn't know what to say.  I don't either, so we're in the same boat.

We left church feeling exhausted and refreshed.  Sometimes I just need to hit a brick wall of feeling, letting the emotion wash over and cleanse me.

April 28th, 2012

I was looking around on the Trisomy18 Foundation page today.  It occurred to me that Abby might live longer than I expect.  I hope that I am able to embrace each day without waiting for her death.

It also occurred to me that she might not live to 39 weeks.  I had really blocked that thought.  I am aware we only have a 50% chance of a live birth, but I choose to forget that she may loose her strength before labor.  That realization is scary.

I'm glad I don't spend too much time considering that.  I'm glad I get to feel her kicks and know that for now she is strong, and healthy, and alive.  That our story with her has already begun, and we're so blessed to have this child growing with our love.

Thoughts on showing support

 I was just writing something and wanted to expand on a thought.  I think this is something that has always rung true for Trever and me but it's more present in our life right now.  I know someone else who I was very close to at one time, as her husband was taking an unexpected path and their life was changing I know a lot of people said "positive, loving" statements that just really didn't help.  It's good to acknowledge that someone means well, but it's tiring after awhile.

We know that people are coming from a place of love.  They are probably offering the only thing they know how to say, and they probably haven't experienced anything difficult enough to know that those statements really aren't very helpful to the average person.  However, those statements might be helpful to them personally... that's the tricky thing with people.  We all need something different.

For me, someone asking questions is more helpful than giving me their hope or their needs.  Saying "I'm sorry", "Is there anything I can do", "I'll pray for you", "You're in my thoughts", "Do you need a drink? (haha)" are all statements that don't ask someone to conform to your ideas.

Our biggest goal is to be true to how we feel, at the same time keeping our focus on all that we have to be grateful for.

We've learned that it NEVER helps when someone tries to remind you of this... it has to come from the inside.  I'm just putting that out there in case that helps someone who is wanting to offer support to someone else someday.  Saying something like "well, you just need to focus on the blessings in your life" is the same as telling someone that they aren't justified in being sad/angry/confused.  Although I absolutely believe the statement is true, I just don't believe it comes across as helpful.  When someone mentions a blessing and you encourage them by acknowledging how great it is that they can see those blessings, that is more helpful.

Telling them how it could be worse isn't so helpful either.  Especially if it's wrapped up in a story about how someone else had it worse.  Yeah, thanks.

Basically, telling someone how to get through something is not very helpful, not really that thoughtful.  Each person processes differently.  I would have no idea how to tell someone to get through a situation similar to this.

Enough of my soapbox, in clarification we have been so thankful for everyone who has reached out.  Every message we get is so important.  We are grateful for the people who keep us in their thoughts and share that with us.  We are SO grateful when someone shares how Abby has made a positive impact on their life.  What a blessing that is!!  It's always better to hear something rather than nothing, even when it doesn't come across as helpful it's still nice to be thought of.

April 26th, 2012

I feel like I'm in a good place today.  Sunday was such a high, and then I seemed to be coming down step by step.  Yesterday I found myself feeling anxious.  I don't do well living in the anxious state, it's definitely not my comfort zone.  But I'm learning to accept it, and to allow myself to adjust my interactions as necessary.  As in, avoiding situations that add to my anxiety.

I'm thankful to find a seemingly steady place to be today.  I feel "normal".  Not on the way up and not on the way down.  I can live here, I can definitely function here.  It's funny to realize that this is a comfort for me, a place where I can smile while feeling the sadness inside.  This feels like me, the new me that I've had to adjust to.  But I have adjusted and that's a great thing to realize.

We got a little surprise today, two little surprises actually.  My dad brought two tiny kittens home for the kids.  They are about 3 weeks old.  There mom was killed where he works, he's afraid that he killed the mom.  My dad is an animal lover, he's really a lover of life and animals are so cherished to him.  At any time in his life this would cause guilt, but I think it's worse right now.  Everything is a bit sharper, we don't have as much of a buffer.

So "we" have these darling little kittens.  We've tried to nurse them but they aren't ready to acknowledge that their mommy is gone.  The vet said to keep trying, eventually when they realize she isn't coming back and they are hungry enough they will eat.  It's a sad thought.  I'm clearly an animal lover too, I really believe they have emotions.

We have to feed them by bottle every 3 hours, we have to make sure they stay warm, but not too warm.  We have to change their bedding.  I didn't expect an infant this soon, definitely not two of them!  But we're gonna role with the punches and do our best to keep these little kittens alive.  And hopefully they won't start to think they are inside kittens, because that is not what we're open to.

The kids are super excited, and even though Trever "does not want them" he admits they are very cute.  Life is full of the unexpected! :)

April 25th, 2012

We met with our Olympia OB today.  I had been looking forward to meeting with him.  I think I've mentioned before how fortunate I feel with our medical team.  We are able to talk candidly with both doctors and we are blessed to have a spiritual connection with both.  Talking with Dr. Bell was a good reminder that we are the only ones accountable for our decisions concerning Abby's care.  There will be pros and cons to each decision and we will hopefully be confident in making the decisions based on her needs, our needs and the needs of our family.  We already know we don't want to do a lot of medical intervention, but we want to balance that with keeping her comfortable and giving her a chance at life.

We've decided to continue our prenatal care in Olympia and then add in visits to Tacoma.  It will be easier on our family and so much more convenient as we head into appointments every 2 weeks and then weekly.  I can't believe how quickly the time is starting to go.

I've been feeling so thankful that life is back to a normal speed. And I'm so eager for the chance to meet Abigail.  At the same moment I find myself feeling that familiar panic that we're getting closer to the reality of this situation.  My heart tightens a bit wondering how the experience will unfold.  I know I would rather embrace life than avoid life so I need to cherish each movement that Abby gives in my belly and keep an open mind towards what we will experience the day she gets here.  And hopefully the days after that.

I've mentally prepared myself that we will be so blessed if we get a month with her, I need to start to open my heart to the idea that we may very well have more time than that.  That said, I still just hope for at least minutes.  And I'm starting to realize that it will still be okay if we only get to hold her after she has left us.  She has still had a life, she has still made such a big impact on our family, she will be with us forever.