"be a sunbeam"

i thought minnie was dressing hope up as a wreath for the christmas holiday.  that is, until she started saying, "be a sunbeam.  hopie, be a sunbeam"  hope does light up the room, so it makes sense that minnie would dress her up as a sunbeam to highlight this fact.  minnie's budding imagination never ceases to amazes me.  and, hope's willingness to play along with her sister's shenanigans increasingly impresses me each day.  they are both little rays of sunlight.  sunbeams, if you will.  

sisters

monkey business

she doesn't give up easily when wrestling with a stuffed monkey.  curious george may be on top in this picture, but hope ended up taking him down in the end.  her dad was impressed by her skills.

smiles and giggles

we've been getting lots of these lately...

the gift of hope

holding hope for the first time

in the NICU

happy fourth of july...almost.

daddy getting her ready to go home

it has been important to me to write my thoughts about when hope was born.  time to sit and write has been less frequent these days.  so i've jotted a few notes down here and there over the last five months.  i am finally taking the time to write today as the girls nap.  so, here is a different kind of birth story that focuses on the emotions we've felt and lessons we've been learning.  i kept the enthralling details of my contractions, epdidural, etc. within the confines of my journal. this post is  mostly for me.  don't feel any kind of obligation to read.  i just wanted to make sure and get down some of my memories, thoughts and feelings.

i've read a lot about feelings that new parents of children with down syndrome face.  denial, anger, frustration, depression...there is a whole slew of them.  my reading included a blog posts and short stories from parents who felt like they didn't want their child at first because he/she wasn't the child they had expected.  my heart ached.  i cried as i read one particularly intense post.  i was so impressed by the honesty of the mother who wrote these feelings.  the raw emotion that she shared showed courage.  as i read, i felt really grateful that i haven't felt those same feelings.  when hope was born there was the initial shock that rocked my world as doctor told us that she has characteristics of a child with down syndrome.  there will be no denial of the pure and utter shock that came with those words.  the ache of loneliness and uncertainty that flooded my whole being as the respiratory therapist rushed hope to the NICU is also undeniable.  at the time christian and i were supposed to be celebrating, goo and gaahing over our sweet new baby, i was left in the labor and delivery room with a nurse i'd met only a few hours prior.  i longed to be with them.  my heart was full of uncertainty and my head full of questions.  however, there weren't feelings of anger.  uncertainty was rampant.  but, i didn't feel denial.  i lay in bed with a ham sandwich in one hand and my phone in the other.  reading scriptures, the proclamation to the family and info about down syndrome as i tried to wade through the what ifs.  i wondered what christian was feeling, since we didn't have time to talk before they had to go to the NICU.  after the longest hour of my life, the nurse wheeled me to the NICU.  the moment i saw christian's face, i knew everything would be okay.  practically speaking, i wasn't sure what the translation the feeling that overcame me saying "everything would be okay" meant.  but, i felt it.  there was a stark contrast to the concerned look on christian's face as he followed the respiratory therapist and nurse wheeling our little baby out of the labor and delivery room, to the look of peace and calm i saw on that same face as i was being wheeled into the NICU.  everything was as it should be.  it was visually apparent.

as we spent the usual time that families spend in the hospital with new babies, i felt that we were different than all the other families on the maternity floor.  however, that feeling has changed.  hope has down syndrome, but the syndrome is not who she is.  the syndrome does not define our family.  the syndrome doesn't define hope.  the person she is has helped our family.  the person she is brings out a lot of good in the world.  it brings out the good in people.  my brother-in-law, pete, was talking to christian one day and he said, "i just can't help but smile when i am around her."  hope brings hope.  she brings goodness.  she bring innocence and something so pure everywhere she is.  both christian and i feel we've been given a gift from God.  a gift that allows us to feel peace and understanding about how hope will help us individually, help our family and help the lives of those who allow her to touch them in a way that only a child that has a disability can.  we have felt light and peace.  we've felt the love of God in our home.  we've felt blessed by her little sweet smiles and laughter.  

i'm not going to pretend i don't worry.  i do.  i worried that hope had hirschsprings disease.  i worry that helth problems will come up because they are more common in children with down syndrome.  i worry that if that is the case, that hope will leave this life before we do.  i worry that she will outlive us.  then what?  who will take care of her?  i worry that things won't work financially.  i worry that people will be mean and make fun of her.  i worry that she will struggle.  i worry that i can't fix the struggle for her.  i worry that i won't be enough.  it turns out i worry with minnie too.  but, i am trying to take it all a day at a time.   and i realize that worry doesn't help.  the Lord has given us the gift of hope.  i have no question that He will provide.  He always has.  why would He stop now?  

watching loved ones struggle is a challenge.  i anticipate we'll have some hard times in watching hope struggle and work harder to accomplish things that for most aren't quite as difficult.  my gratitude is great for her willingness to join our family to teach us lessons.  lessons we would not be able to learn were she not in our family.  i can't help but believe that hope made the choice to "take one for the team", knowing full well that there would be struggles.  but, being willing to join us despite her knowledge of the struggles she'd face.  to teach us.  to be patient with us.  to be what we need her to be so that we can become what God knows we can become. it is a beautifully humbling reality to be in this position.  

a vivid memory came to me the other day.  it was of a time before christian and i were married.  we were sitting in an interview with our stake president.  he was discussing with us the importance of the temple.  he said that if we were worthy to attend the temple, then nothing in our lives would ever go wrong permanently.  there was discussion of commitment.  being committed to each other, and God, didn't mean only being committed during the happy times.  he mentioned some challenges that couples may face and should continue to be committed to each other in.  one of the things he listed was having a child with a disability.  i remember thinking, "that would be hard.  i don't know that i'd do so well in that situation."  at that point, i remember being overwhelmed with the idea of having a child with a disability.  i realize now that our child with a disability, is actually perfect in ways that i only dream of being perfect.  she has a perfect spirit that is blessing so many.  i recognize the beauty in hope's disability.  there is an understanding that she is here more for me than i am for her.  minnie, christian and i have been given a beautiful gift.  the gift of hope. 

big accomplishments

today i vacuumed the whole house, clipped all of minnie's fingernails and two of her toenails.  with accomplishments like this, i'd consider it a red letter day.

this happened...

and i loved it. there is a special bond between these two girls already.

"more bacon"

no question.  she is her father's daughter.

the cake says it all...

each year on november 6th christian and i have a good laugh.  we reminisce about declaring our love to a few close friends on a cake.  it was a great day, and i love celebrating our i love you anniversary with him.  it's a great excuse to eat cake.  

cheeks

as of late...

i figured i should post some of the irresistibly cute things the girls have been doing lately.  

as you can see, hope has been looking up to minnie and her shining example.  

minnie has been learning to share.  she got a hold of a phone headset and really felt like hope needed a turn "listening".

hope started smiling.  be still my soul.

minnie got this out and said, "manicure".

clearly, hope loves her halloween costume.

lastly, i think all of minnie's dreams came true today.  princesses, a butterfly costume, george, books and blankies...what more could a girl ask for?

welcome to holland

there is a story, "welcome to holland" that is often shared in the down syndrome community.  it was written by emily perl kingsley in 1987.  our OB shared a revised version of it with us right after she told us that hope had characteristics of a child with down syndrome.   our good friends, tony and kelly smith, gave us a copy of the story right after hope was born.  the president of the utah down syndrome foundation also gave us a copy.  the story goes like this:
i am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the 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 plan 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 awhile and you catch your breath, you look around...and you begin to notice that holland has windmills...and holland has tuilps.  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 many never be free to enjoy the very special, the very lovely things about holland.


and, that is the story.  i love most parts of the story.  i don't love the part that talks about how the pain of not going to italy will never go away because of the significant loss.  i am certain there will be pain as we see hope struggle to do things that many children don't struggle doing.  but, there hasn't been, and i don't foresee there being pain that she isn't another person.  the fact that she is in our family is a huge gain.  she is who she is, and we look forward to watching and helping her become all she can be.

it seems to me that most things in life are like "holland".  we plan and expect that things will turn out a certain way.  most often, things turn our differently than we planned.  it is a blessing that they do turn out differently, because our plan would never do what God's plan can do for us.  His plan is so much more appropriate for our lives and what we need.  so, i am welcoming holland and finding that it is a beautiful place!

hope elaine sabey

there is so much to say about our sweet, little hope.  writing about her birth and the effect she has had on our family is a priority.  i want to be able read about the emotions i felt as she joined our family.  we feel so blessed by her.  for now, a picture and brief intro is going to have to suffice.  

hope joined our family on july 3, 2013.  she weighed 7 lbs. 3 oz. and was 19 inches long.  she had a little trouble breathing when she first joined us, and had to take a trip to the NICU to get help with that.  christian was there with her and she had a wonderful nurse, respiratory therapist and dr. assisting her.  she was in good hands.  we are so grateful that the hospital staff was so attentive to her needs.  we feel so blessed and humbled that the Lord has chosen to bless our family with a daughter with down syndrome.  

happy 3 years...on june 5th

right before our anniversary, christian and i decided not to buy gifts for each other.  we felt like spending time together would be the most enjoyable thing for both of us on our anniversary.  stressing out about finding the right thing and spending money we should be saving sounded less good.  i mentioned in passing that i wished we could eat some of our wedding cake as part of our anniversary celebration.  it was such a delicious cake.  (we didn't freeze the top of our cake for our one year anniversary.  the lady who made our cake told us that she would make an anniversary cake for us for our first anniversary.  however, in that year, she went out of business.  so, we never got to enjoy that tradition.)

for our anniversary, we went to the crepery for dinner.  we sat by the logan river and enjoyed stimulating conversation.  it was so nice.  then, christian told me that he had left something at home.  he didn't mention what that was.  we ran home to get it.  when we went inside, there was a lovely anniversary cake!  i have never been so surprised in my life.  it was the most thoughtful gift.  i've never been more surprised in my life.  we ate cake, then drove to the temple to take a picture of us in front of it, like we did the day we got engaged.  it was such a nice evening.  

i'm grateful that i'm married to such a good man.  he blesses my life every day.  he's the right one for me, and he was worth the wait.  

training season

just drinking green smoothies and lifting weights for training purposes. it takes a lot of preparation to be a big sister.

bookworm

she can't get enough...even at the store she insists on reading.

vinyl letters

"memories are keepsakes always to be treasured". the irony of the vinyl letters on the wall in my hospital room above the bathroom were ridiculously uncanny. especially considering i was losing all fluids possible from both my north and south orifices.

*as a disclaimer...i am just fine.  last week i had a little bout of norovirus so i  had to get an IV for dehydration.  i'm fully hydrated now.  i forget that people actually read my blog.  apologies to anyone i worried.  i just couldn't pass up these awesome vinyl letters.  

happy valentine's

wait a minute...is it may already!?!? oh well, happy valentine's anyway. minnie decided an orange was much more appealing than all the valentine's chocolates. such a little health nut.

reverently, quietly

she just decided to start folding her arms one day.  she also decided to show us what she was eating.  great example of quiet dignity. 

winner, winner, chicken dinner

minnie found some of my old race medals and couldn't get enough of them.

happy birthday little miss minnie mae!

happy happy birthday minnie! 

 

i think we were all much more excited about the cake than she was. 

we were really careful with the candle.  

that tutu and fire would not have been a good pair. 

stripped down for the main event. 

just getting a feel for things.

trying to figure out what to make of all this.

a little coaxing from daddy to help the get things moving. 

all the kiddos were so excited to see what minnie would do with her cakc. 

we moved in to the high chair to see if

we could commit minnie into getting down to business. 

the move to the high chair was successful...

especially if mess measures success.

presents! 

i don't think tate liked minnie's game. 

even though this post is a month late, minnie's first birthday was a blast.  we had family and a couple of friends over for pizza, cake and ice cream.  minnie had her first cake and ice cream.  last, but not least, there were lots of fun presents.  it was also a time of reflection for christian and i.  it is crazy to think that this little person has been in our lives for a year now.  in some ways, it seems like she has always been a part of our lives.  when i think back on the last year, it seems like such a whirlwind.  i started remembering how amazing it was when she was born, and how uncertain we were as first time parents.  i remembered how hard nursing was.  i remembered just staring at her and being amazed that this little beauty was ours.  i remember how much she disliked getting her diaper changed and taking a bath.  then came the memory of the fog of the first few months.  that lack of sleep was a real challenge.  then came the memory of many a blow out and always having spit up all over the clothes i was wearing.  it has been amazing to watch her grown and develop.  it was so exciting when she started rolling from her stomach to her back...and then from her back to her stomach.  or the when we first fed her rice cereal.  we were so excited, and nervous, when she started crawling, then lifting herself up on things, then walking.  these are life changing things people.  all this to say, we've loved having minnie mae in our family and it truly is a celebration that she has been blessing our lives the a year now.