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.

April 24th, 2012

Yesterday I was still feeling great, so I started gathering up the kids to go to a play group that I often don't attend.  It was just so beautiful, I figured we would have a great time.

Then I started getting anxiety.  I was enjoying my good mood, and I was worried that being around a lot of mom's who don't know what is going on wasn't going to help continue my mood.  If no one knew I could have made it through, but some people do.  And that shouldn't matter, I know they would let me talk or not talk as I wished.  But I'm not comfortable feeling like I'm telling partial truths especially when I'm in mixed company (ie some people know the whole story).  As I write this I realize that it's my decision, and I can do what I feel like. I'm kind of wishing I had just gone.  In reality I think it was safer for me and my mood to just stay home.  Although I was feeling good, it wasn't as good as Sunday and I'm a bit gun shy of feeling depressed again so soon.

So the kids and I stayed home.  We still enjoyed the sunshine (mid 70's in April?!?!?!).  We surprised Trever by washing both cars, then we set up a pool and completely took advantage of relaxing in the sun.  I think I even got some color. :)

Today has been similar to yesterday.  I'm doing good, feeling fairly good but feeling a bit unsteady.  A bit unstable.  It's always a bit easier with Trever around.  I just love being able to spend time together as a family.

Tomorrow we meet with our Olympia doctor.  It'll be our first "normal" visit in about 10 weeks.  I'll miss seeing Abbygirl on the ultrasound, but I'm looking forward to just doing the routine (pee in a cup, bp, weight ... okay, maybe I'm not too excited to see what I've gained over 10 weeks!).  We'll be back to Tacoma in less than 2 weeks to do another ultrasound.  I guess that's the upside of this pregnancy, getting to see Abby on a regular basis.

She kicked me hard enough today that I almost felt my arm move.  I'm so thankful she is strong and active.  It gives me hope that she has a better chance of making it through birth and spending time with us.

April 22, 2012

Today was a wonderful day.  Yay!!  When I'm feeling brighter it is so much easier to register the lessons I'm receiving.
** I don't think there is a trigger for my mood turning sad.
** Therefore there is no way to guard against it.
** There is also not a full proof way to "snap out of it".
** Therefore I just have to ride it out.

That should be easy enough.  But it's not.  I'm clearly a control freak.  I want to know things, I want to know what to do, I want the power to adjust and find the bright side.  What I'm learning... sometime you just don't get what you want.  Hmm... probably could have found a much easier way to learn that lesson!!!  (Matter of fact I'm sure my parents said something VERY similar to me as a child).  Clearly I'm a slow learner.  And I'm certain I will have this epiphany again in the future.

What I'm also learning, again and again, is that the sadness will pass.  And I will enjoy my days.  I can't say I will ever get more comfortable feeling miserable, but I can always try to remind myself that it is temporary.  God does not say we will avoid heartache, but he does say we will not face it alone.  And I know that to be true.  I need to talk about things.  Anyone who knows me probably knows this to be true.  When I'm alone I'm thankful to ramble on to God.

And I'm so grateful when God brings someone to me for conversation.  This morning I called my friend to ask her husband a question.  After he finished answering my question we feel into conversation about Abigail.  He is a wonderful man, a wonderful husband.  I find it soothing when someone is able to talk comfortably with me about Abigail, to ask questions and share their support.  He was even encouraging me to drop down for a visit anytime I would like (they live in a beautiful area of California), adding that he would take the boys away so his wife and I could have time together.  Did I mention that he is a wonderful husband?  I think I'll try for a trip in a month or so, but I'll bring my son and hope that his boys stick around also.  Taking a few minutes to touch base with my friend after getting off the phone with her husband was an added bonus.  I think I'm sentimental... I find it heartwarming to know that my friend is married to someone who is so welcoming and comfortable.

Nathan, Natalie and I also went to church this morning.  We are really enjoying the new church we've been attending.  Pastor Ryan is easy to listen to and their is a strong community feel.  Trever and I both feel so blessed to have made the decision to give Cornerstone a try.  Although we haven't told many people about Abigail I already know we will find a good support system in this congregation.

I had a couple trial runs today just acknowledging that we are expecting #4 but not clarifying her condition.  It was a bit strange but overall it was fine.  I was glad I was able to bite my tongue... as I'm usually someone more likely to spill my thoughts.  I'm glad I gave myself (and them) a chance to be "normal" with this pregnancy.  To focus on the positive of simply being pregnant instead of the uncertain future of our daughter.

Later in the day I met up with one of my husbands best friends.  I know he's probably a bit jealous.  We had such a great time talking for a couple hours.  I know Trever values him, as he should.  To find a man who can talk so well about life and all that comes with it is valuable.  Trever is like me, we like to connect with people, we like to go beyond the surface.  Trever will do whatever he can for a friend, and it comforts me to know that he has friends who will do the same in return.  This friend doesn't have children and I think he has made it down to visit each of our kids at birth.  I think that says a lot about a man and his support of his friend.  I know he will be one of the first people to make effort to meet Abigail.

God has filled our lives with blessings.  I could never have imagined all the lessons we would gather from one itty bitty little girl.  I'm thankful we are having the chance to learn and grow because of her, I'm so grateful that we both wanted to give her whatever life is written for her, and I am hopeful we have the chance to share part of that life with her after her birth.

April 21st 2012

My parents are so amazing.  They have all my kids for the day.  I mentioned a few days ago that I think I need some time to just disconnect from everything.  I was looking forward to a bath, just laying and relaxing.

After a friend came over last night for a quick play date and dinner I was able to get my bath. Thanks to 3 exhausted kids who were easily in bed on time, and no desire to actually clean up at the end of the day.

Today I took advantage of the kids wanting to play outside with my parents.  I dropped them off, and went out mindlessly shopping.  It was nice, for a while.  I talked with a good friend while looking at furniture, then popped in and out of some stores.  My cell phone was dying, I think it gave me too much time by myself.

And then I came home and finished reading a book that a friend had sent to me.  Heaven Is For Real.  I really tried to stay open minded about the story.  And I did a good message from it.  There is comfort in the visual that Abigail is more than her body.  I'm still working on the idea that she has a brother or sister already waiting for her in heaven.  I believe that life starts well before we meet our child, it's just a hard leap for me to visualize them together.

Today is so beautiful, the perfect NW day.  But I'm feeling a bit depressed, obviously okay and normal but still not fun.  I don't live in this mental space well.

I miss my Trever.  I think I see a pattern that the days are harder for me when he is gone.  And he'll be gone 3 1/2 days.  I'll make it, I just prefer my time with him around.  He's the only one on this journey with me, at least in the same role as me.  (that is not to minimize the affect this is having on our parents).

I think I'll be heading down to my parents house to collect my littlest.  Distractions are good.  And all 3 of my distractions are welcome in my life.  I also have a friend coming over for dinner and a movie, I know the evening will be wonderful.

Hopefully this slump will fade away.  My eyes feel so heavy.  The days are long when I feel like this.

I think sitting outside with a huge plate of nachos and a beer with my friends would be so nice.

How many children do I have????

I was thinking today... when someone asks me someday how many children I have, how will I answer?  Will I always want to say that I have 4, but one passed away?  When will I get to a place where the answer (whatever it may be) won't be painful?

April 19th, 2012

I don't know what brings on the sadness.  And I surely don't know how to make it go away.

Yesterday I was telling Trever about a blog post that I received from someone I know.  Scott is a pastor up in Seattle.  His post was about focusing on gratitude in life.  It resonated so deeply with me.  He wrote about the truth that I believe in my heart.  A truth that I think Trever and I both try to live by.  If we are able to focus on the blessings in our life then life stays in perspective.  The troubles don't go away, but they don't hold as much control over us.  He writes more thoughtfully than I do... here is the link to the post. (http://looktothenorth.wordpress.com/2012/04/18/gratitude-the-important-choice/)

This morning I read an article about how life is You v. You.  How we get to make choices, how we are responsible for making choices.  The article was business focused, but clearly applies to my daily life.

I thought I was doing so great.

Then the sadness crept in.  I'm not even sure when it started.  But all of the sudden I knew the only place I really wanted to be was in my bed.  Or maybe in a warm bath, lights low, with soothing music.  Someday I'm going to get better at putting my life (my responsibilities/appointments) on hold and just going with what I want to do.  It's a personality flaw... I'm just not good at that.

So I went along with my day.  I went to my massage (rough, I know).  I was almost able to just lay there quietly (the silence broken only by myself).

On the way to the massage I started thinking about a funeral for Abigail.  On so many levels that is just not right.  I shouldn't have to think about that.  Really I don't have to, but sometimes I do.

I have no idea how to plan a service.  How will I choose music?  Who will be there?  How do I communicate when/where the service is held?  What will I wear? (clearly insignificant... obviously my mind goes to the safe details).  I did think that it would be nice to have a basket of Dahlia bulbs to offer to anyone who wanted them.  I'm working through the metaphor still but I was thinking about how we plant bulbs and then wait patiently while they are nurtured.  In our family we usually have no idea what the bulbs will end up looking like once they bloom (Trever once planted "tulips"... in the spring we had tons of daffodils!).  We do what we can to nurture them and then wait patiently.  And the life of the bloom may be relatively short but we cherish it for what it is.  I see those flowers and find myself smiling, feeling the happiness that permeates from their blooms.  When they are gone I don't necessarily feel sadness because I can remember their beauty and I know I can look forward to seeing them again.  I'm sure there is a more concise way to word all of that.

I'm smiling right now... even in my sadness I am feeling blessed that the thought of planting bulbs in memory of Abigail crossed my mind.  I don't garden, I kill flowers quickly, I have NO interest or confidence in landscaping (evident if you've talked to me recently about the plans we need to clarify and complete this summer).  So I'm going to chalk it up to a quiet moment when I was able to hear an important message... a message about finding a piece of beauty in an otherwise messed up thought (funeral).  Not everyone would feel comfortable giving credit for this to God, and I don't know that I did at first.  But these are the ways in which I feel His presence, His strength.

When I feel sad I find myself withdrawing, staying a bit more quiet and protective of myself.  I know this is normal, and sometimes helpful.  But just writing this post has helped me to process my thoughts and feel a bit stronger.

I think it's so important that I remember to share my thoughts, when I am feeling strong and when I want to shut the world out.  I want to look back and read this and know as much of the story as possible.  I want my kids to know that life is about every emotion, about riding out the waves and making choices about what you want to focus on.  And sometimes it's absolutely okay to just be sad.  And sometimes it's okay to let yourself be happy at a time when sadness seems like the only appropriate emotion.

PS. When I came home from my massage Trever must have sensed my sadness.  Out of the blue he told me that if it made me feel any better he was feeling sad today too.  I wonder what it is that we're on the same page today???  I'm so thankful for my loving husband, and for playing the light-saber game with my kiddos.

Misc. messages

I keep finding kind messages from friends.  Rediscovering these messages has been heart warming, so I'm adding them here (rather than trying to figure out where they belong in the timeline.

Peters, sending prayers to you and your family. Also wishing you the precious gift of time. God has so clearly placed His trust in you, as difficult as the journey may be. Know that you dont walk it alone.
Love, JH


My thoughts and prayers are with you and your family. You are truly one of the strongest women I know and God only gives you what you can handle. There is a reason he blessed you guys with a beautiful baby girl. Stay strong. You should start a blog of this incredible journey. (**what a great idea! ;) )  
MBC


She's already special and precious, I can't wait to hear what you will name her. Please hang in there, I can't even imagine how hard this is. TGA


Hey Girlie!!
Just wanted to let you know that you and Abagail have been on my mind and heart a lot lately...you are both in my thoughts and daily prayers! I truly think you are one of the most amazingly strong woman that I know and have had the pleaure to be around. Your honesty and grace have left me speechless and I have learned so much from you in our times together and by reading your blog...I read every post and I KNOW for a fact that you will help many families and women who are faced with the same diganosis as Abaigail...you are a blessing to everyone you meet! I know that some days are hard but you have many people that you dont know as well as those you do praying for your family

Love you lady
XOXO
BDN


My dear sweet JP... Saw your news and can't stop thinking about you and your family. Your character, strength, faith, and love is amazing. I've always known you were a very special lady, even when you were just 18 and I first met you! I have no doubt that you and your family were hand-chosen by God to foster this tiny soul. You will all be in my thoughts and prayers daily. Please keep me posted,  Haven't seen you in far too long but I still love you dearly and think of you all the time. Hugs, hugs, hugs....
TNW

• Been thinking of you.
• I wanted to tell you that everyday I get the pleasure to work with a little boy who was born with an extra chrome and I have only become a better person from it. My life has changed for the better and I know yours will too. Kisses!
  ADP
  
  
  Peters, I'm so sorry to hear about your darling baby girl. I can't imagine how you are feeling. I know a few people who have been in your situation and all of you have so much strength and courage. I don't know a whole lot about T18 but I know people who have had their children live longer than doctors said they would. I will pray for a miracle. Also, have you read the blog of Kelle Hampton? She has a baby with Downs and she is soooo amazing and inspiring. I kinda want to be her friend but i don't know her. I think her blog is called enjoying the small things. Check her out. Again, I'm so sorry. They say God only gives you what you can handle. You and your husband must be strong and amazing!!! You're family is beautiful. Do you have 3 kids??? I have 2 and my head is spinning!!! Lol. Just wanted you to know you are in my thoughts and prayers. TTF
  AMH
  
  
  hey jen....might seem out of the blue...but wanted to send you a message to let you know that you and your family are in our hearts and prayers. your messages this week have really reached out to me and i wish that there was some kind of comfort i could provide to you.
  
  your feelings and ability to share your story have really touched my heart and i think that you are so very brave. your love for your little girl shows through and she couldn't be luckier to have you as such an amazing mama. i loved hearing today how you were surrounded by love inside and out..... how full your heart must be, even as it is breaking.
  
  many loves and prayers,

  KBR
  
  
  Hi Jennifer!
  I hope you don't mind this message! I am friends with AH and I saw your comment on her post. I just want to let you know that my family's thoughts and prayers are with you as you go through this incredibly difficult time! I am so sorry to hear about your daughter. 10 years ago this past Tuesday, on March 27, 2002, my daughter Alyssa Grace was stillborn at 40 weeks. It is an amazing difficult time when you lose a child and as someone who has suffered through a similar loss, I just wanted to send you a message of support.
  
  I wish you and your family all of the best!
  CA
  
  
  

  Dear Jennifer and Trevor,

  
  

  We feel so blessed to be part of your lives but especially to be included at such an intimate level in this journey with Abbygirl (that is the name I like the best and what we call her).

  
  

  Jennifer, your ability to put words to Abbygirl's life is a true gift to us all. We eagerly look forward to each email and the free flow of emotions and thoughts from deep within a young mother's heart so full of love and tenderness. I am amazed as the days pass, your capacity to blend the joy and sadness into something you can describe as this experience of being Abbygirl's mom. Your eagerness to seek God for all that he wants you to learn from this child that he has put in your care humbles us Jennifer. Please know we are by your side and hang on every detail. We love sharing this life with your fourth child and again feel honored to be part of it with you and Trevor.
  
  With much love,

  D and L
  
  

April 15th, 2012

Luckily days of feeling good are part of this journey also.

Yesterday I went away with 6 wonderful women for a much enjoyed getaway.  We had such a relaxing time, walking around Kirkland in the sun.  Lounging for a late lunch (and some stranger picked up the tab?!?!?!?!).  Talking for hours in the super nice room/suite.  Then getting dolled up to go out dancing.

A few of weeks ago I tried to dance with my girlfriends.  It wasn't happening, I couldn't even pretend to fake it.  Quite honestly I wasn't sure last night would be any more successful.  But it was.  We hit a little dive bar, and after a bit I was able to pretend that I wanted to dance.  Then I realized at times that it actually felt good to dance.  I find that when I am doing really "fun" activities it's a bit more obvious to me that there is a void inside my chest.  There was a lot of time spent on the dance floor feeling a bit disconnected, feeling like I was trying to go through the motions.  But there was also time where I laughed, a very true laugh.  A very healing laugh.

One of those moments was when Abigail got her first dance with a boy.  Haha.  This kid was hilarious.  He was *shocked* that we were all married, more so that we were all MOMS.  I'm guessing he just recently moved out of the house (but maybe he still lives at home?).  His exact words were "I think I'm a little too immature for you guys".  Yeah, probably so!  He won our hearts, he was welcomed to dance with us for moments at a time (near us, around us... not sure exactly the right wording for that).  Late in the evening, well after I thought I would be back at the hotel, he "backed it up" straight into my belly.  At first it was a shock to me (if you've had babies you might relate to that moment when you didn't realize your belly stuck out that far, when you touch something you thought was still a safe distance away)... then I was a bit appalled.  That was my darling baby he was impeding upon.  Then it occurred to me, she'll never have this chance.  To dance at a bar with her best friends, to push away the drunk boys who think they have a chance.  So we laughed, and told him he was dancing with my baby girl.  The look on his face was priceless as he reached out to feel my belly.  Then he continued with his dance moves... and I let Abigail have her chance (it was all very innocent!!!).  I gave her a few moments of boogieing to the music... then I reminded her she was much too young.  The whole situation brought a very real smile to my face.  It was fun to have her in the room with me, to let her dance, to be happy about the moment instead of focusing on the sad reality that this would probably be her only time letting loose that way.

The evening was a great reminder.  It's important to let myself be happy, to let myself enjoy the moments.  And sometimes that only happens when I force myself to give it a try. I'm so thankful that I have friends who love me for where I am, for who I am.  They would have supported me going back to the room, they would have even gone with me if I had needed them to.  They didn't stop having a good time on my account (some of them even joined me in struggling not to pee our pants while laughing crazily in the park).  And I'm so thankful that I just couldn't handle being away from them, from missing out on the fun I knew they were going to have.

I'm so glad that my mind and heart were able to find some moments of joy.  I'm so thankful for my supportive husband and family who always encourage my friendships.  I'm so grateful to have friendships with such amazing women (I can't believe  I've known each of them for well over 15 years... most of them for at least 20 years!).  Life is just bursting with blessings, and I'm especially grateful to have days where I realize that.

April 12th, 2012

I think today was one of the most "normal" days I've had in a while.  It always helps when Trever is home.  I think it helped also that I had an agenda for my day.  I set out to make some Chicken Pot Pies for our family and another family we know.  They adopted a darling boy recently (they actual brought him home about 3 1/2 weeks ago).  I've been wanting to take a meal over, but timing hadn't worked out.

Spending the morning taking care of someone else, as well as my own family was so nice.  I love to cook, so spending the morning focused in the kitchen was great.  Saying I was focused is probably not accurate!  I forgot to put the timer on twice, leading to over baking the pie crusts and then the brownies.  Whoops.  I gave in and bought new pie crusts (I'm a from-scratch baker but haven't even gone as far as to make my own pie crust), but Trever convinced me that the brownies were okay.

I figure it was a bit of calorie control since the middle of the pan was the best part, why bother with the rest?  And oh was the middle good!  It was rich, dark chocolate brownie covered in sea salt caramel and then a layer of chocolate ganache.  Oh so yummy!

As I dropped the food off with our friends I tried so hard not to apologize, but wasn't able to bite my tongue.  But she is a mom of 3 so I figure she doesn't expect perfection.  When I ate the food tonight I did restrain myself from calling to tell her to season it up a bit... it was perfect for the kids but definitely not the flavor that I usually create.

I remember going to a bible study a few years back (with this same friend).  We talked about how apologizing for our imperfections promotes the idea that others should be perfect. Ie. when someone comes to your house and you apologize that it isn't clean, or you make food and you apologize that it isn't perfect.  Instead as mothers, as women we should just be true to where we are.  Our homes aren't always clean (much to my husbands dismay, but he is a great cleaner so he can put out as much effort as he likes!... and he never gives me trouble about our house, which by the way is fairly clean he, just doesn't realize it.), we don't always have salad with our dinners, sometimes our kids are overdue for a bath.  Whatever, the list goes on.

So I'm working hard to shout from the roof tops that our life is not perfect.  That our life is real.  I don't think that means I can't work towards the ideals I'd like, but I can accept where I am on any given day.

And I feel the same way about Abby.  She is not "perfect" by our cultures standards.  But she is perfect, she is a miracle.  Every life is a miracle.  And she takes the idea of loving something that is different than me to a very high level.  I know I've said it before but I don't need her to be "fixed".  I don't need a baby who comes out as healthy as my other 3.  I adore her, I can't wait to touch her and tell her how imperfectly perfect she is.  And I want to give her so many kisses before she leaves us.  Suddenly I'm less afraid of the work it will take to have her with us (the care will most likely be much more involved that our other children), and more excited to prove to myself that I can do it.  That I can embrace the challenge and exhaust myself by loving Abby and my other children for the time that she is here.

We hope she is able to come home with us, and we hope our friends and family are able to meet her.  I think she's going to be a beautiful, special little girl.

Doctors visit

We met with our doctor this morning.  Dr. McMahon, she is wonderful.  She has a way of supporting and encouraging us, educating us and giving us hope.  And I think she does all of that without realizing it.  She is so calm and compassionate.  We have been so blessed with the medical team that surrounds us.  At each step the right person has been placed in our path.  

Ruth, Dr. McMahon's ultrasound technician is amazing too.  As I walked with her to the exam room she asked how I was doing.  And then as she shut the door she said "So, how are you really doing?".  The extra prompting allowed me to open up, to share where I was at.  And she listens, and she answers questions "to the best of her knowledge".  I feel like I'm surrounded by such capable, caring professionals.  See, blessings abound.

I've been feeling anxious about what this appointment would hold.  I just didn't know, would we learn something new about Abby?  And I put together a list of questions to help me gain more clarity.  Then I promptly left the list sitting in my office.  But I realized, none of it is that important today.  Today it's important to just take it one step at a time, walk into the office, see what happens, ask the questions that come to mind.  It worked.  We got to see our beautiful girl, she is growing - slowly but surely- and her little heart is still beating strong.  Oh that sweet little heart.  It might not last as long as I would like, but it's sure working well right now.  

We talked about delivery.  At this point we are leaning towards delivering at St. Joes in Tacoma.  We'll be inducing somewhere between 37-39 weeks.  We learned that there are no benefits associated with continuing the pregnancy longer than 39 weeks and there is increased risk of stress on the baby if the placenta starts to deteriorate (which happened with Natalie).  I'll be trying all of the tricks to kick-start labor on my own, but we'll probably end up medically inducing.  

Dr. McMahon talked about the support that we would receive from the hospital.  As well as the support that we would get from using Hospice after we go home.  They can help monitor Abby's comfort level and work to make her more comfortable when needed.  We won't have someone here 24 hours a day, but we'll have a support team.  I'm sure that will bring us comfort.  

It's so hard to face the sadness that is ahead of us.  It's so wonderful to be reminded of this darling little girl growing in my belly.  She's a strong little girl, and I'm so glad we are getting this time with her.  I am so hopeful for the moments that we will have with her after she is born.  To hold her, love her, touch her precious fingers and toes.  I know it will be so different than the births of our other children.  I will cherish each moment in a different way, I will focus on her with a different understanding.  

Even though we have about 15 weeks to go I am feeling super excited right now.  Just thinking of Abby is bringing a smile to my face, to my heart.  Sometimes it's hard to see past the confusion, but right now it's just a view filled with blessings and love.

April 11th, 2012

I feel like there are so many thoughts running through my head today.  It's only noon and it feels like it's already been a full day.

As I drove up to my doctors appointment the loneliness set in.  I'm so glad I was driving during "daylight" hours.  The last time I drove by myself for a long period of time it was 4am... not too many of my friends are available at that hour.  Today I called a dear friend that has been so supportive of me during this process.  She's not someone I talk to regularly but someone I trust very much.  We've been in each other's lives for almost 20 years.  It's nice to have long standing bonds.  And she isn't someone who assumes she knows how I feel, so she still asks, still tries to learn.

We talked during my drive, a healthy thing for me.  I voiced my experience that few people seem to reach out, and that when I tell people I'm having a "good" day I know they don't really know what I mean.  People see me as so strong, I think it's hard to see that I'm not the me that they think they know.  Maybe I'm stronger than I realize, but I'm also more in need than most people realize.

She mentioned that people probably know I'm riding a roller coaster and they don't want to be the tipping point to sending me down hill.  That they know I live in this reality all the time (you can't really escape it), but they don't want to trigger a sad mood for me.

I hadn't thought of it that way.  She's very good at giving me perspective while also validating my feelings.

I also was reminded that whether it is "fair" or not I need to initiate my interactions with my support system.  Sometimes, often actually, I wish that people would just show up at my house (A dear friend basically did this recently and it was WONDERFUL).  Bring a bottle of wine and a desire to talk.  We can talk about Abby, we can talk about books, we can gossip... I don't really care, it's just so nice to be connected.  It's nice to feel important/special enough to someone that they would make that effort.

I know that I am surrounded by so many wonderful people who are willing to do whatever they can when I need it... I just have to learn to ask.  That's not an easy task for me.  It's hard to say that I need help, it's hard to figure out exactly what I would like (going out, staying in, with families, with just the girls, etc.).  It feels amazing when someone just suggests something and then makes it happen.

It's such a valuable lesson for me, to learn to seek my support system.  To learn to be open and forthcoming with how I am doing.  It's a gift I can give those who love me, to let them support me.  I'm still very early in this learning process.  I don't think I depend on others easily.

And it teaches me to continue to reach out to others who may be in need also.  Not to wait for a request but to initiate something.  Someone I know just lost her brother to a motorcycle accident.  I know she is heart broken.  I don't know her well, but I still want to make sure I reach out to her.  That I continue to ask her how she is months from now.  And if I can pull it off, maybe I can even remember in years to come that this time of year will always bring her sadness.

Thank you my dear Abby for giving me an opportunity to grow as a person, a mother and a friend.

April 10th, 2012

Today I feel a bit angry.  Angry at everyone who won't just let me be where I am.  Angry for people fighting to give me hope.  They aren't going through this, and statistics show that more than 75% of them wouldn't choose to even give her the chance I've given her.  So back off, just love me (in the way I want) and leave me alone.

But maybe all this just goes to show that I'm not keeping an open mind, not allowing myself to hope? To love?

Ahhh!  I don't even know.

I love that my belly is growing, I love that I feel her moving inside of me.  I just want to cherish her and love her... to accept that my time with her will be shorter than I would like and probably more painful than I realize.  I'm not sure I want her to live a longer life, I'm afraid of what that means for our whole family.

There are so many stories in the news about Rick Santorum and his daughter Bella. (and so many people want to share those stories with me)  She is 3 years old, she has T18.  I don't know if she has Full, Partial or Mosiac Trisomy.  I don't know what Abby has either (update: we do know that Abby has Full Trisomy 18).  But all people catch is that she is alive, and she is 3.  She has been hospitalized twice this year for pneumonia.  She doesn't look like she can hold her head up well on her own. No one wants to see those details, they only want to say "she has T18, and she is still living... see Abby might live".  And yes, she might.  And if she does I will work so hard to find the joy, find the blessings.

It's just so difficult to live in limbo.  I miss who I was 4 weeks ago.  I miss my joyful anticipation, my stress, my ignorance, my excitement of knowing we were going to be raising 4 kids.

I know that when I tell someone that today is a good day they have no understanding that I mean I'm operating at 70% of what is normal for me.  But that is my new norm.

I'm so thankful for the beautiful kids I have, for the distraction they bring.  For the smiles they give me and my heart.  And I'm thankful for each movement Abby gives, for the reminder of the joy of life... even if it's a life that I can't comprehend at this point.

April 9th, 2012

I went out today.  I took the kids to the gym.  It feels good to get back to my normal routine.

However, at the gym I got to have a lengthy conversation with someone about all the "hope" there is for Abby. Generally I don't mind people wanting to express hope.  But this conversation was difficult for me.  She just wouldn't stop... every problem could be fixed, surgeries performed.  I just wanted to say thank you and walk away, but some how that didn't work out.

The thing is, I don't think I have much hope.  And it's confusing to try to decide if I want to hope.  It leaves me in limbo.  I do hope, it's just that I hope for a smaller miracle.  I don't want to think about all the surgeries that might be available. In all honesty there aren't many surgical options for a child with T18 anyway.  I don't want to risk her only days with us being spent in the NICU with Abby attached to tubes and unable to be held.  I don't want more roller coasters, learning what each procedure would mean and then working through the risks/benefits.

I don't want our lives focused on fixing what is wrong.  I want our lives focused on embracing what is right.

But am I being so selfish????  Should I want to fight for any chance that is given?  To hope that she can stay with us if we just do some surgeries?  Am I just afraid of what her life would look like, what our life would look like?  With a daughter that probably wouldn't learn to sit up or stand, let alone walk. A daughter who would most likely not know how to talk.  But what if she could do those things?

.....

After I left the gym I went to the park with the boys.  As we walked up to the park a sweet old man (in his late 70's or early 80's) said to me "At least you don't have 4, some people have 4 of them".  I just had to smile at him.  He had no way of knowing that we will have 4 children.  And I would have loved to have 4 children who could play at the park.

Psalm 139

A friend sent this to me today:

Ps 139: 13-18

For you created my inmost being; you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place.  When I was woven together in the depths of the earth.  Your eyes saw my unformed body.  All teh days ordained for me were written in your book before one of them came to be.  How precious to me are your thoughts, O God!  How vast the sum of them!  Were I to count them, they would outnumber the grains of sand.  Wen I awake, I am still with you.

"All the days ordained for me were written in your book before one of them came to be."

Although the entire verse is significant, that is my favorite sentence.  There are so many people hoping for a miracle for Abigail.  I know that is what they need to do.  I find myself wanting to embrace her for who she is, for how she was created.  I know I can learn so much from accepting her and her differences.  Recognizing that God does not promise us a long, healthy, easy life, but He does promise to give us strength throughout our trials.

April 6th, 2012

Trever and I decided to wait until April to work on the details of Abigails arrival.  He wanted us to have time to digest the information and adjust to it before we headed into the unwelcome aspects.

Trever shocked me when he told about what he has been doing.  He doesn't bring up his thoughts about Abby very often, other than to enjoy her kicks.

He called the county ME's office.  He registered her.  ???  I would never have thought about doing that.  Now they know we are expecting her, and they will get paperwork from our doctor to confirm that she has T18.  This way when she dies we won't have anyone investigating the situation.  We still have to call 911 to confirm the death, but the process will be "simple" for them at that point.

What a horrible thing to have to think about, plan for and do when you are expecting a child.  I'm so thankful that I have a husband who knows a bit about the death process.  I know it would have been worse to have someone questioning us in our time of sorrow.

We also talked about what we would use to carry her to the cremation site.  What we would put her in afterward.  Really?  This is my child, how can I make those decisions without pain?  I'm sure some people would want a beautiful Urn.  I don't.  I want something simple that can be disposed when she's returned to the earth.  I don't want years of staring at a box thinking of the sadness.  I don't want to move someday and think "what do we want to do with this?".  I don't want our other kids going through our stuff someday and finding such a significant box and feeling conflicted about it.

Trever also mentioned wanting to make her a quilt.  Something that is filled  with pieces of love from the people in our life.  I'm excited about that.  And so touched that he started planning out the idea.  That will be a keepsake that will honor the love that surrounds her life, our life.

I have the most wonderful husband.  I am so blessed.

April 4th, 2012

End of week 2... this week went so much quicker than last week.  It feels like a ray of light.  I went on a 3 day trip for work, was able to spend very valuable time with some friends in each city... very cathartic.

I've also found my way of losing focus on the present (in a good way).  Reading is my thing.  I can loose myself in the book, keeping my mind silent.  My husband has dirt biking, I'm so thankful I picked up a book to find my avenue.  Sometimes you just need to escape.

As I spend these days feeling so much better I also realize that I almost fall into a state of denial.  Abby was kicking around in my belly while I lay next to my daughter.  I wanted to day dream about Natalie and her little sister.  About them snuggling and playing together.  About Abby wearing Natalie's old PJ's.  And although some of that may come true, it won't be in the way that I would like to imagine it.

I'm thankful today that those thoughts didn't created intense sadness, just a manageable longing.

We have one more week until we see the doctor again.  We'll have another ultrasound to see how Abigail is doing.  Every time I feel her I am so thankful for the sign of life.  I'm sure I'll be anxious as we head in for our visit.  It's been so long since we've gotten "good news".  I feel like I started growing REALLY fast, which makes up for lost time but leaves me worried that she is not swallowing the amniotic fluid.  I would usually (in past pregnancies) have worries like this (not this specifically) but I have always been able to tell myself that I'm just worrying... what are the odds that I could be right?  Now it's different.  Now my worries might all be true.

For now...
I am thankful for Abby's movements.
I'm thankful for time with my friends.
I'm SO thankful for the friends that reach out.
I'm thankful for my beautiful children, who seem to be at "perfect" stages in life, SO MUCH FUN.
I'm thankful for a loving and supportive husband.  My life would be incomplete without him.
I'm thankful for family and the support they offer (I would not have gone on such a great trip without them.)
I am thankful for the blessings that fill my life, for the health and the happiness that fills my body.
I am especially thankful for a relationship with my God that gives me strength and teaches me to find contentment, if not joy, in my circumstances.