Monday, May 28, 2012

May 27th 2012 (a bit of a soap box...)

I'm reading the book Totally Desperate Mom right now.  A woman from church gave it to me on Sunday.  Her friend, Wendy Hagen wrote the book.  She Wendy's first child had Trisomy 13. When Traci heard our story she brought us a copy of the book.

It's not a sad book.  It's a realistic book about motherhood.  So far I'm loving it (I'm only 25 pages in).  Early in the book she tells about Faith, her first child (who died from T13).  She also touches on the difficulties some couples have in conceiving, and adoption.  She has so many poignant thoughts to share, and plenty of humor to go along. (no I'm not getting paid for this advertisement :) ).

Wendy writes about how motherhood is permanent. "No give backs. No do-overs."  She also mentions how the permanency of parenting is actually part of what makes it so incredible.  And that God "has chosen you to be the mom for your child."

I'm sure if I read back I will find a post where I've written that I don't think God gave us this situation, but that He walks with us and allows us to find growth in pain.  I'm finding myself a bit more confused with this idea.  I know that little Abby is a gift from God.  I think in this situation specifically it is our culture that makes Abby's life more difficult.  That we have a belief in what is supposed to happen, what a healthy child looks like. I truly believe that she is a gift, that she is perfect in her own way (just as I am perfect in who I am... right?  okay, maybe that's a bit of a stretch).  And it's such a beautiful idea that God picked our family to love and embrace Abby.  To show that she is important, that her life although different from my other children is precious and she deserves a chance to live it.

It would be easy for me to just say that God is in charge of everything, that He only gives us what we can handle, that He gives us challenges as opportunities for growth.  I do believe that we are only given what we can handle... when was the last time you saw someone actually die from a difficult situation (well other than Padme from a broken heart at the end of Star Wars III)?  And I believe that if we look to our faith we can find meaning and growth in the moments of both pain and joy.  But I'm still not sold on the idea that God is completely in charge of everything.  There are two hiccups in that for me.  (1) Free Will, ya that's kind of a big one for me.  (2) Satan's influence on our world.

When someone is brutally beat to death, did God really do that??? Or does He help us through our pain, does He help us to start taking baby steps towards healing?  Here is my thing... if we believe that God is in charge of everything then he is surely responsible for all the evil in the world.  Maybe I'm just too young in my faith, but I can't connect those dots yet.

I'm not certain why this is important to me right now... but I want to have this written out for my kids.  I want them to learn and decide for themselves.  I hope they find strength through the Lord, that they don't give up when life gets tough.  That they allow themselves to grieve and then work to find meaning in the difficulties of life.  I think finding a lesson, a meaning, a purpose can make moving forward possible.  Which doesn't mean that the situation itself ever makes sense, or feels less painful.

I just really want my kids to believe they can make it through anything.  And that the greatest rewards come from working hard, facing hardships and not selling out when life gets tough.  So often it is the anticipation of an event or a change that is harder than the reality.  (in my mind I know there are plenty of realities that are harder than I could even try to imagine).

I'm so thankful for little Abby.  For her strength and our chance to love her.  And I'm so thankful for all the people who offer us support and love, who stay in touch and reach out.  I'm so thankful that Abby is able to leave her footprints in this world, even though she may never take steps.

Friday, May 25, 2012

May 25th, 2012

I can't believe we have only 2 months until we meet Abigail.  Crazy.  By July 25th she will be here (most likely a bit earlier).  I know I'll be sad to be done with pregnancy.  I love being pregnant, I love my belly growing (I don't love the left overs and the rolls when the baby is gone), I love to feel the wiggling.  Actually, this is the first pregnancy that it hasn't weirded (yes, I know that isn't a word) me out to feel the wiggling.  I always cherish it, but it's also a bit strange to know that something is living and moving inside of me.  I think I'm weird.

I'm haunted by a question from Trever.  Recently he asked me if I understood that Abigails life is as important as our other kids.  Although she is so important to me and I cherish every bit of the life we've shared with her, I don't necessarily connect her to my other kids.  I don't have long term dreams of her.  In that way I'm not as connected to her.  As I look at the pictures on my wall of my three kiddos last Christmas (just as we found out we were expecting another miracle) I don't see her sitting there with them.

It's hard not to question myself as a mom.  If you've talked with me you've probably heard me say how blessed I am that Trever and I are naturally on the same page with most aspects of this pregnancy (with most aspects of life).  But this is one area where I am so different than Trever.  I plan, he experiences.  I anticipate, he just takes it as it comes.  I question, he accepts.  I have so much to learn from him.  I hope in the next couple months I will be able to let go a bit, stop protecting myself and give myself the freedom to hope.  To hope for hours, days, weeks, months.  To not wake each day wondering if this will be her last.  To instead wake each day and smile because she is in my life.  And I hope that we can do wonderful things with Abby, make memories with her.

As much as I want these next 8 weeks to go slowly, I know they won't.  Life moves so fast.  I'm scared and excited for the weeks to pass.  I can't believe we are getting so close to the next stage of Abigail's life.  We've know this diagnosis for just over 9 weeks, we have just under 9 weeks left.  Crazy.  Exciting.

As I dropped Nathan off at school this morning I thought about this pregnancy.  At first the words in my mind were that I wouldn't change a thing.  It took me a moment to realize that is a complete lie.  I would love more than anything to have Abigail be as healthy and strong as my other children.  But as that is not her story, I wouldn't change the experience we were given.  I'm so thankful that we have walked this path.  That we have been given the chance to stretch ourselves and our understanding of what a life is, what a life can be.  I'm so thankful that I was given an opportunity to grow my mind, my heart and my faith.

There are two quotes that come to mind:

"There is no passion to be found playing small - in settling for a life that is less than what you are capable of living" Nelson Mandel

When I grow old, I hope 'tis never said...
"She traveled always where her pleasures led".
But rather may they say, 
"Wherever she went, She found some happiness....and was content".
~Clara B. Salzman 1897-2004

Thank you my dear Abigail for giving me a chance to live within these philosophies.

Tuesday, May 22, 2012


I was asked a month or so ago if we were bonding with Abby more quickly than our other children.  I did feel like that was the case.

We've only found out one other time what the gender of our baby was.  And we didn't name her until she was born.

This is the first time we've named a baby.  And knowing that her life will be different, shorter than the others, I quickly had a deeper compassion for her.  Every movement held a deeper (or just different?) meaning for me.

Recently I've realized that although I feel so strongly for Abby, I am also less bonded.  I have a deep tenderness for her, and an eagerness to meet her, but I don't have dreams/hopes/visions of her future.

I watch Andrew with an understanding that he will be my last toddler.  I may have a baby in the home, but I will most likely not have a toddler.  And although I've come to terms with that (I think), it's the part of this process that makes me the most sad.  That we won't watch her learning to walk or run.  That we won't get to be amazed at how quickly a baby turns into a little person with ideas and desires.

I love each of my children so much.  They are such a light in my life.  I'm sad that I don't have the same joyful anticipation for Abby.

A conversation with Trever and Natalie

I can hear Trever and Natalie talking in the kitchen.

Natalie: "... when Abby is as big as me"
Trever "Well, Abby won't get as big as you"
N: "Why?"
T: "Because she'll go to heaven before she gets as big as you"
N: "Oh, why?"
T: "We don't know how long Abby will be with us but she probably won't get as big as you before she goes to Heaven.  Her heart has a problem."
N: "Will I go to Heaven?"
T: "Not for a long time, because you have a strong heart beat"
N: "Oh.  And we don't know how big she'll be, or what she'll look like." (not a question, but a statement)

The conversation kept going.  I wish I had captured more of it.  So precious and so sad at the same time.  Natalie wants to call her "Blue eyes" if she has blue eyes, or we won't call her blue eyes if she doesn't have blue eyes.

Love that girl.

May 22st, 2012

I've been feeling like I was normal again lately.  I guess if I read back over this blog I'd have a better idea of how long I've been feeling this way.  Anyway... yesterday I started to realize that what I'm describing as normal is really just surviving.  I feel a bit void, a bit detached not so much that I don't function well, but enough that I don't seem to feel much.  I haven't felt much sadness, and although I think that was a nice reprieve for awhile it also distracted me from the fact that I haven't felt much happiness either.

I have a friend who took either anti-anxiety or anti-depression meds for awhile.  I remember her saying that although it helped with the downside of her emotions it also took away her vibrant happy side.  I can relate to that on a small scale right now.

What started as recognizing as a feeling of detachment turned into recognizing that I'm also a bit depressed.  (shocker, I know).  There are so many thoughts in my head lately, it's been hard to even think of capturing them here.

I think I've also missed my husband.  He worked a lot last week and wasn't feeling well so we didn't get much time on the phone in the evenings.  Then he came home and we went to a BBQ with some new friends before packing the kids up the next morning and heading to Seattle.  While he was in Seattle he came down with the Flu.  No fun for him.  Last night he was feeling well enough to talk.  It made me realize how much I missed him.  I'm a quality time person (for anyone who knows/follows the 5 Love Languages).  We haven't had much quality time lately.  He's my best friend, last night was so wonderful.

He helped me to work through so many of my thoughts.  He was able to use his male "fixing" powers, and also his oh-so-wonderful empathetic listening skills.  From our talk I was able to realize that my current need to find control are stemming from my anxiety/depression.  I have a drive to get some projects done (not necessarily the ones that I'm responsible for... convenient, I know).  In the past I have felt an excitement at the end of a project.  There is something so satisfying about completing a project, accomplishing a goal, and especially getting to utilize said project.

The truth that we discovered is that most of these projects aren't super important.  And that accomplishing them would keep us from spending time together as a family.  Trever would be working on all of his off days.  We started out by creating a list of all of the unfinished projects around the house, since they weigh on Trever I wanted to support getting them done.  But now just isn't the best time.  Just giving ourselves the freedom to let go is great... but it's also (secretly) given me the clarity to figure out how we might do more than we think we can.

So today we woke feeling more energized to cross some things off of our list so I could relax a bit.  I called a funeral home, Funeral Alternatives.  They came recommended by two different people.  I'm thankful I made the call.  It was both easier and tougher than I had anticipated.  The process will be simple, we have a few forms to fill out and I now know the order/timeline for the process.  I found myself tearing up while stammering through my explanation of Abby.  Really??? It was like I didn't know what to say, how to clarify what we are going through.  That's what happens when I feel less detached.  And talking to a funeral home was a reality check... this is really happening to us.

We've also figured out how to move forward with a quilt that we want to make for Abby.  I knew I wanted to make her something, and Trever (completely on his own) came up with the idea of making her a Friendship Quilt.  I'll be honest, it stresses me out a bit to open up a request to other people to contribute... and not for any of the reasons that people might assume. But my husband gives me strength and clarity when I start to get weird, so we're moving forward.  And now I'm excited about it.

I've also found some areas to help plan her service.  Some blueprints of sorts.  I just want to have a brief outline of what we want, something we can work with when the time comes.  If anyone has song/reading suggestions please feel free to comment or send them to me.  It's super hard to plan a celebration for something that is ultimately so sad.  We know we want a thankful/happy vibe.  But I also can't pretend that "Celebrate" is the most appropriate theme song.

Trever also helped me to see the benefit in having a social time after the service.  I was totally against the idea of a BBQ at our house as her service.  But I do think that opening our home for anyone who wants to come by after the service will be nice.  As Trever said it allows a time for people to debrief, and for us to hold memories of friends within the context of the day.

Saturday, May 19, 2012

May 19th, 2012

I've just had such a wonderful time with girlfriends.  There are some people who just easily touch my heart.  Even though I don't see this group often I love them dearly.

It was so nice to have each of them meet Abby.  We had lunch, shopped, lots of talking, dinner and more talking.  We took a picture with each of their hands on my growing belly.  (I need to get a copy to post).  I felt "normal pregnant".  Just enjoying time with ladies who were joyful about my baby.

There were a few conversations about Abby (and a long one late at night).  When each friend asked me "how I was really doing?" I gave my most honest answer.  That I'm in a really good place.  That life feels normal again, although I have reminders of how unusual that normal is.  And that is exactly how I was feeling.

I feel her little kicks and a smile crosses my face.  I hold my hand on my belly and feel love and comfort by her presence.  I love being pregnant, I love growing a new life.

I think this is such a beautiful picture (thanks so much Annie!!).  We always get excited when our friends are growing a new life... but there is something special about Abby.  And it's so wonderful to see the tender love that my friends have for her.

Wednesday, May 16, 2012

May 16th, 2012 part 2

Our appointment went well.  Abigail's heart was beating strong, I'm gaining weight (which I could easily guess!).  Hopefully she is taking on some of that weight gain. ;)  And today we're 29 weeks pregnant.  Less than 10 weeks until we meet our sweet little girl.

When we got home this afternoon Natalie gave me a big hug... whoops my mistake, she gave Abby a big hug. (I secretly love those moments when she corrects me, even though I also enjoyed the moment when I hugged her back without knowing I was making a mistake.)  She gave her little sister lots of hugs and kisses.  And I got to stand there, being the lucky Mamma that is carrying the baby sister and witnessing the love of the big sister.

I just watched a video at my favorite blog (  Her two youngest just started ballet, her oldest was there with her in some of the pictures.  I never even hoped for a sister for my daughter.  I didn't have one myself so it didn't occur to me.  I loved that she had brothers.  By the time we found out she would have a sister I already knew their story would be different.  It made me cry to watch the video and realize that we won't have that moment with our girls.  But I can remember to be thankful for the hugs that my oldest gives to her sister (who is still in my belly).  She has a sister, just not one that she'll share clothes or stories with someday.

May 16th, 2012

Nathan "I wonder when God will put a baby in your belly again?"
Me: "do you mean when will Abby come out?"
N: "No.  I mean after Abby is out."
Me: "Oh honey, I don't think we're going to put another baby in our belly"
N: "But you don't know. Maybe God will put another baby in there to replace Abby."

We talked about how Trever and I had wanted 4 children and Abby is our 4th child.  He knows that she won't be with us for very long, and he likes the idea of having more kids.  I'm sure this is confusing to Nathan.  Sometimes it's confusing to me.  I'm thankful to have had the opportunity to grow this baby.  But it's sad to know I won't have four little ones running underfoot someday.

The moments when I watch Andrew really starting to turn into a toddler make the sadness even more tangible.  We might have a baby around for a bit, but we won't have a toddler again.  I don't like to let my thoughts linger there for too long.  It makes my heart ache.

I'd rather focus on her kicks and wiggles.

I go for a doctors appointment today.  It makes me realize I haven't felt her kicks today, and I don't remember if I felt her as I went to sleep last night.  Hopefully she starts kicking soon so I don't walk into the appointment with nerves.  I'd rather go in confident and excited to hear her darling little heartbeat.

Sunday, May 13, 2012

Going to Holland

I've heard this story before, but not when it applied to me. So thankful that our dear friend in Germany sent this to me today.

Hi Jenny,
thank you so much for the updates. We think that your idea of celebrating a party with Abby each week is great! She'll enjoy your love and will feel so secure in a great family!
I just read a story by Emily Pearl Kingsley. She is a writer for Sesame Street stories and was born with t21. Perhaps you already know her story about Holland but I think it just fits to your situation:


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

It sounds as if you have already found your way to feel home in Holland. And trust me (we live pretty close to Holland) - Holland is so beautiful, colourful, open-minded and nice- just as your little Abby is!


Saturday, May 12, 2012

May 12th, 2012

Some days I just don't know what to write.  There is a great reason for that... some days thoughts of Abigail having T18 and thus a short life expectancy doesn't play a big role in my day.  It's not that thoughts of what that means don't cross my mind, it's just that I'm getting so used to it, so comfortable with the reality.

Not that I have any idea what that reality means.

I need to cross off some items from my planning list.  I feel like I'm in college again, I have a big term paper due in a couple months.  I know it's coming, I have only a slight idea what I want to research.  I know it won't get any easier as the time draws near.  But I just haven't started.  Even though it weighs on my mind daily.  Procrastination doesn't have an upside.  It zaps me of energy and in the end the job still needs to get done.

I need to just put it on my calendar and get started.

So this week (maybe Thursday when Trever is home) I am going to call or visit some funeral homes.  I want to know who we'll be calling when her life is over.  I want to know that all I have to do is sign the line below the decisions we've already made.

And I need to at least get a rough outline of her funeral.  There may be changes based on how long we are blessed to have her stay in our lives.  That's okay.  But I'd like to have an idea of what we want, where it will be, and who will help pull it all together.  It shouldn't be that hard to just sit down and write out an outline, pick flowers (I wouldn't have even thought to have flowers there... maybe we'll do balloons, that seems a bit more common and happy for celebrating a child)., songs, scripture.   I don't want a sermon, but I want to honor that Abigail is with the Lord, and that I am so thankful for the strength that He has given us to walk this path.

Clearly my life is not the "normal" that I used to know.  To think that I these thoughts go along with me having a good day is crazy.  But I guess that is what comes with time, with healing.

I'm so thankful that Abby is strong, that she is moving and kicking and reminding me that we are growing a little love child in our belly.  Babies are such miracles.

Wednesday, May 9, 2012

May 9th, 2012

My sweet little girl has been wiggling around a lot today.  Such beautiful reminders of her strength.  I can't believe we will meet her in less than 11 weeks.  It's going so fast.  I'm so excited.

I learn so much from my other kiddos.  They love little Abby.  They come up and give her hugs (I've mistaken those hugs as being intended for me...I was quickly corrected!!), Natalie tries to poke her or say hello to her through my belly button.  Nathan lays with his hand on my belly at night hoping to feel her, and he talks so kindly about her.  They know she is different than they are, that she will go to heaven before we do.  (Thanks so much to my friend Tiffanie for the "Heaven is for Real for Kids" book).  They aren't aren't burdened with the painful emotions that I sometimes feel, with the unnatural process of planning a funeral while still eagerly anticipating her arrival.  They just love on her.  They teach me so much, and I am so grateful for each of them.

I'm so curious how Andrew will react.  He still gets a bit jealous when I hold other babies... I think he'll want to be on our lap with her all the time.  Our laps will be filled with love.

This new normal has become comfortable for me.  Sometimes I have to remind myself that it's still a shock to most other people.  Sitting and talking with my friend Beth this weekend was funny.  I got to say things that sound "normal" to me but are clearly outrageous statements.  She got to laugh and show shock at my reality.  Ahh, the things I could say on Facebook.  All so inappropriate.  I'm glad that there are people in my life who can handle my humor and the craziness of this journey.  People who also reach out and love me for where I am each day.  And definitely for the people who are open to helping me plan a funeral.  I don't even know where to start with that one, but it's something I want to take care of sooner rather than later.

On the lighter side... Trever thinks we should plan a party each week that Abigail is with us.  So... if you are looking for a reason to celebrate life, please join us!  You may have to let us know you are interested in joining us, we'll be sure to put you on the VIP list so the bouncers will let you by.

Monday, May 7, 2012

May 7th, 2012 Doctors Appointment

Once again we had a great visit with the doctor.  We've invited both sets of parents to join us for an ultrasound.  Trever's parents came today and my parents will come next month.  I think it's nice for them to get the bonding time with Abby.

We did the normal ultrasound as well as some 3D shots.  It's amazing to see the 3D shots, but I still cherish the old school shots.  They are so simple.  It's all great.

We also took some video of her heart.  It's amazing to watch it beat, logic (for the lay person) says that it shouldn't be so strong.  But it is.  She is.  Her heart rate is always strong, and the sound is beautiful.  And she's still a little mover in there, always wiggling.

So her heart is still the same (large hole), her cysts are gone (which is common as the baby grows), and her fists are clenched.  Her growth is continuing at a steady pace, still keeping her tiny but we're definitely seeing growth.  We think she should be around 5 pounds at 39 weeks.  I'm so curious to meet her and see how tiny she is.

It would be so easy to get confused and think that her only anatomical "problem" is her heart.  And that would lead to wanting to do a heart surgery.  But the real anatomical "problem" is the extra chromosome.  And that hasn't/won't change.  And I definitely don't want to go through a heart surgery and have her life defined by the time we spend in the hospital.

So I'm excited to see how strong she is, and I'm super excited to meet her and see how much time we get to spend together.  Although I know we have to take this day by day I am SO excited to meet Abby and choosing to believe that we will have time with her.  

Here are pictures from today.  Isn't she darling??

PS. She has fingers, and her head isn't wavy... she's so sweet.

Friday, May 4, 2012

May 4th, 2012

Wow, I can't believe it's May already.  Crazy.

Trever and I were talking a couple of days ago.  Talking about how we are so thankful to be in a good place right now.  He referenced how at the beginning of this journey he would say that we were dealing with a negative experience in a positive way.  Now he doesn't really view this as a negative experience anymore.  I like that.

I've thought about it more over the past couple of days and I think I agree.  I'm thankful for this experience.  I'm not saying I prefer this over the option of raising a healthy, happy 4th child.  But I'm thankful that we both knew we wanted to embrace this growing life, that we have both experienced a paradigm shift about what a life is "supposed to be".  That we eagerly love Abigail.  I'm not saying that I don't still feel pain, and an anticipation of loss.  But I'm thankful to also feel gratitude about this pregnancy.

I hear so many examples in our culture of trying to avoid pain.  I see it in the way we raise our children.  In the end I really don't think it's possible.  I think trying to avoid pain makes us unprepared when we finally find ourselves surrounded by it.

I'm thankful that we are having a chance to remember that life is full of different emotions.  I am blessed to be living.

A wise friend was talking to me today about sorrow being a choice.  That we all face hard times, but it might be how we face those challenges that encourages our sorrow.  (I'm totally adding to what she said and definitely not articulating well).  I know sorrow will come, pain will last longer than I'd like, joy will feel elusive, but I get to make choices.  I can let myself get stuck, or I can embrace the feelings, appreciate them and grow with them.  (This is absolutely NOT putting a timeline on my own or someone else's right to feel lingering pain). I don't think I've thought through this enough to explain myself.  Oh well.

Abby is moving around a lot in my belly.  I try to sit and enjoy her movements a couple of times each day.  To really focus and treasure her.  We only have about 12 weeks left until we meet her.  I find myself excited for the time to pass quickly... and then wanting it to take twice as long.  For right now we have this beautiful life growing inside me, she is safe.  Even though I don't know if she will be alive when she is born, I am so excited to meet her, to see her and to hold her.

Tuesday, May 1, 2012

May 1st, 2012

I've been moody today, and it's been an unwelcome roller coaster.

But it only took a quick moment for me to smack myself upside the head and remember that I have choices (although I can acknowledge I don't always get to control my mood.  Me?  Not be able to control something???? Crazy, but true!).  I popped over to to see what Avery had done today.

She died yesterday.

So crazy.  Of course I knew that would be the ending of her story, but it's still so sudden.  I'm so glad that the family had embraced the time they had with her, and reminded me to do the same with Abigirl.

I want to remember to bring Abby into our lives and make memories with her instead of stopping our lives and waiting for her life to end.  If you see me forgetting to live this way please invite me to do something fun with Abby.  If she is able to be with us after birth I want memories of her joining our life, not laying around the house.

It's amazing how much a story can impact other lives.  I'm so grateful for Avery and her family, for sharing her story and her triumph.  She didn't let the news of the diagnosis take her life before her body was unable to stop fighting.