the race.

so we had our String of Pearls run this past weekend. it went very well and we had a great turn out. friends, family and friends we consider family ;o). it was a super hot day. i will blame my poor attempt to run on that. it was a good time and i feel so supported and loved. 

my biggest concern for this weekend is that no one would come. that our daughter is being forgotten. that we are only 6 months out from her birth and she is all ready becoming less real to people. these may be silly concerns. but i don't get to celebrate first's like every one else for my daughter (like first smile or first laugh)... my firsts are measured by my first holiday without her or like this weekend- our first memorial run in her honor. so it means a lot to me. words can't explain how much this weekend meant to me for that reason. that our immediate family didn't get to be there in person (only in thought).  so thank you so much for coming (to those who came) or those that donated or thought of us on that day.

these kind of events are important to people who lose someone as it validates their existence. it reminds me that my daughter was here and that she was important to others, or that we are important to them to sacrifice their time to join us. i have been having a rough couple weeks emotionally- as i am going through some medical problems (i will go into this more soon) so my emotions have had me couch bound every weekend. not wanting to do anything with anyone. i feel renewed after this weekend. not only did i get some new light shown on my medical issues, but i was reminded that we are cared for immensely by people. that my daughter is also cared for.  i also loved seeing and meeting other families that have gone through what we have. it makes me feel less alone. this fall String of Pearls will be holding an event for us mommies to get together and meet. i can't wait! 

anyway... here are some pics...

the roses i made for us to wear in Sophia Rose's memory

the event...

our rose on my beautiful friend

the signs for the sweet babies

zoe even wore her rose.

yep i was about to pass out from heat stroke and running. mostly the running...

the kids even ran

the team.

we released balloons in her memory.

- a thankful family, zoe and all.

(ps- if you click on a pic it will make it bigger)

6 months

wow. 6 months. i can't believe it has been that long since i first held my sweet little girl in my arms.  since i got to touch her soft hair and smell her baby smell. since i got to put lotion on her cute little toes-ies and tiny little hands. since i got to kiss her soft skin and smother her with hugs. a half a year has gone by. i cannot believe it. i don't actually want to believe it. it's a hard place to be in when you want to move forward but you don't want to get further away from the time i last got to hold her.

i can't help but think how much fun she would have been at this age. she would be laughing and smiling and such a delight. i would have 6 months worth of cuddles and kisses under my belt as a mommy. my arms would ache from carrying her around too much, instead of aching to hold her. i would be getting ready to take her on her first vacation with nana and papa dinkel next month. worried how i was going to handle a baby on a long road trip. instead i will go into vacation a little sad that we are missing someone so special.

anyway. i know i don't mention it every month. but the 26th is always hard for me. as it marks another month without my sweet girl in my arms, but forever in my heart. so i sit and look through pictures with an ache in my heart and tears in my eyes. hoping that God gives her a great big hug and kiss on her chubby cheeks from her mommy and daddy who miss her so much.

well.... there is no nice way to segway from that on to anything else. so i'll just jump in to it. i wanted to mention we have our String of Pearls fundraiser 5k/3k this weekend. i am a little disappointed as it doesn't sound like many people will be able to make it to be on Team Sophia and celebrate her life with us. hopefully enough will come that we don't feel silly with a big banner saying our team name, with no real team. i have made the cutest little rose (since it is her middle name) pins/hair clips for everyone on our team to wear in her memory. i'll put a pic on here of them after this weekend. they really are adorable!

can you imagine how cute she would be now?

-Sophia's proud mommy

big things

life is interesting. that is what i think about it.

so today i stayed late at work, to play (aka- watch cartoons on a portable dvd player) with a patient, while the family was told this patient has gotten some unfortunate genetic tests back and the child has an ugly/bad diagnosis. as i sit there watching him laugh at the show and admiring his long eye lashes, i keep thinking he has such innocence about him right now. he doesn't know the road in front of him. he is just a sweet child. one that has seizures sometimes. one who's mommy and daddy love him so much they asked me to watch him so they didn't make him upset with their crying. one who just wants to live his life.

i often look back at pictures of aaron and i. one's from our friend's- abby and matt's wedding- where we had just found out we were pregnant. one's from our adventures over the years. one's where we look so happy and excited for our future. where we didn't know what was in store for us. that young hopeful look we had in our eyes. where i would never have dream that we would have a child with dwarfism- let alone a lethal type. one where we didn't know what struggles we would face in our marriage. i had this perfect picture of our life and where it was going.

and then God's steps in. and BAM! there goes my plans. i know i should know better.... when will i learn? well i am. slowly and painfully. but i am now. only out of utter defeat and brokeness. i guess that is what it took, unfortunately.

i kept thinking this thought while i sat with this patient. that i am sure they will remember everything about this moment. the room. the chair. the people. the drive home.

while watching the rain pour down the window i let my mind wander. wander all the way back to when i got Sophia's diagnosis. unfortunately i got it on a day i didn't expect it- i was all by myself for just a boring weekly appt. i pictured myself getting a call on the phone in the office. and then i picture myself crying on the floor in a back hallway in the hospital. how pitiful i must have looked, a very pregnant girl on the floor crying all by herself. trying to get ahold of my husband. the fear and sadness that must have been so apparent on my face... after realizing that my daughter now had a fatal diagnosis. that i really probably wasn't going to get to bring my baby home. that this picture i had always had in my head was not going to be.

not only was i thinking about this day. but the fact that God has bigger plans for me. and for this child.

i was reminded of this the other day while reading my devotional- Jesus Calling by Sarah Young.

"You will never be in control of your life circumstances, but you can relax and trust in My control. Instead of striving for predictable, safe lifestyle, seek to know Me in greater depth and breadth. I long to make your life a glorious adventure, but you must stop clinging to old ways. I am always doing something new within My beloved one. Be on the lookout for all that I have prepared for you."

patiently awaiting all that is in store for me. -t.d.

a diagnosis. a big breath.

i feel like i can take a big deep breath. we got our final diagnosis today.

Sophia officially was diagnosed with Hypochondrogenesis Type 2 (also called Achondrogenesis)

while the diagnosis sucks.... aka. it is lethal. it is also something we know we cannot carry genetically on to more kids. it is a dominant gene, so it can only be carried if you have it, and obviously we do not have it as it is fatal. the fact that her throat and mouth were deformed does not fit into this diagnosis, but they said that they don't know alot about what babies with this disorder have going on in their mouths, as alot of them don't have autopsies done. alot of people don't choose to carry the pregnancy after the diagnosis. or people build up the extra amniotic fluid and then just allow labor to come early. so there isn't alot of full body research done on these sweet beautiful babies to know more about them.

what we do know is that they are adorable and short but sweet babies. her limbs may not be what people call normal but they are the most precious arms and legs that i have ever held. they had the cutest little rolls and the sweetest little fingers and toes. gosh i miss those. (i have been around alot of babies lately and didn't realize at the time how small her feet where but gosh they were. here is my example size- a little bigger than a 9V battery)

so the good news in this is that we don't have any higher chance to have this happen again more than anyone else. we can try again when ready and not have the fear of this looming over us. of course people that have gone through the loss of a child will all tell you, that this doesn't really take that fear away. we will be terrified and changed forever more with having children that something bad will happen as it has proven to us it can. but enough about that. i apologize for being a downer but as i said last week i am having a rough time right now. something i didn't expect this far out from her birth but what about grief is something you expect besides being sad?

while on the subject of grief. my new favorite grief book that i highly recommend if you know anyone grieving over anything-- Tear Soup. seriously one of the best books i have read on really describing grief in a way you can relate to- cooking soup. that- sometimes people become rushed and think soup in a can is better, but that it (grief) can't be cooked quickly. that it takes a big pot full of- "not fair, bad news, big disappointment, serious heart ache, profound loss, major tragedy and more than i can bear", that you need to wear an apron because it can get messy. that at first your tear soup is bitter, that you make a lot of your soup alone, that not every friend can handle your tear soup, but some can sit down to a whole bowl of it with you. that sometime your tear soup requires some comfort food in it, along with some happy memories. that you dread the day no more sympathy cards would come. that people get impatient with you while your tear soup cooks. that it is hard when you decide one day to eat something besides tear soup, but you still get it out every now and then to taste it. needless to say- this is some goooooood reading. it is made like a children's book with illustrations and is simply clever. buy it for someone you know grieving over anything or trying to understand someone grieving. you won't regret it.

while i am at it here are the other grieving books i have read/bought:

Letters To Darcy- Tracy Ramos

Ill Hold You In Heaven- Jack Hayford

Holding On To Hope- Nancy Guthrie

Grieving The Child I Never Knew- Kathe Wunnenberg (Journal)

When Hello Means Goodbye

Empty Cradle Broken Heart- Deborah L Davis

I Will Carry You- Angie Smith

Heaven is For Real- Todd Burpo

We were gonna have a baby but we had an angel instead (children's book)

Mommy please don't cry- There Are No Tears In Heaven- Linda Dymaz (children's book)

Someone came before you (children's book for our future children)

Pregnancy after a Loss- Carol Cirulli Lanham

Book of Hope- Nancy Guthrie

Prayers for Those Who Grieve- Jill Kelly

Yep I am a bit of a book nerd. AJ came home to me having went a little crazy on amazon.com after Sophia died. but hey! i read them. and i have re-read some. some are for our future kids- i saw them and couldn't pass them up when i was on my ordering spree. as i was trying to process how this fits in to our future life and how to hold on to your child's memory. any way. i apologize for the long rants in this. i have been meaning to write about grief books. if you want to know if i liked one or not you can send me a message. i'll tell you honestly.

well we are taking a weekend to go to a concert for AJ's first father's day. he is an amazing dad and gave Sophia so much love and affection. he has all ready been such a good dad so i can't wait to see what great years he has ahead of him... for now we are going to celebrate his goodness in Sophia's short life and his continued love for her. the hole he has in his heart that will always have her name on it.

hope all you daddy's have a good father's day. (including our wonderful father's)

-AJ's wife.

ranges of emotions

what a range of emotions the past few days have been. i am going to write honestly about them here. because that is what i should and need to do. grief isn't pretty or nice and doesn't make sense. grief for anything or anyone. it is painful real and continuous. i don't want people to think it doesn't still burden you 4 months later. that it still doesn't rule my life. that i can still function normally. i am a new person. one that cries a lot and easily. that gets my feelings hurt easily. that my heart is tender. that other stresses make me break down a lot easier right now. i won't always be like this but i am for now. i will be a changed person after all this is said and done. i don't know who i'll be but i'll figure it out. i will still be Sophia's mommy. that i do know.

in the wake of literally 4 people i personally know having babies all yesterday, i am a complete mess. i am feeling so many feelings. happiness, anger, jealousy, sadness... i don't even know where to begin. so instead i have just cried. pretty consistently since getting off work yesterday through today.

i am happy...

that William came in this world alive.

that the other 3 babies i know came in the world safely and their mommies are okay.

that someday i may have that chance again.

that I have my God to rely on.

that I have the security of knowing that the babies and people i know that have died are with God.

well that is it for happy. i am mainly sad angry and jealous. stop here if you want to leave happy and feeling good.

i am sad...

that William only got to be here 11 hours before going to heaven.

that babies die.

that my sister in law's husband isn't coming home from deployment on time.

that i had to be honest with a friend about something and she is angry at me about it.

that co sleeping has killed 3 kids that my friend has had to comfort them in the ER.

that those parents are probably blaming themselves. i actually HATE that.

that babies die and that scares others that are pregnant or getting pregnant.

that my daughter isn't here in my arms.

i am jealous...

that all these people i know get to have babies and bring them home.

that they got 11 hours with William to hear his sounds, feed him and see him move.

that i didn't really get to have baby showers or fully decorate a nursery.

that they get to buy baby clothes and feel excited.

that they get to move forward with their lives with watching their kid grow up.

that people get to take vacations or family pictures and not think someone is missing.

i am angry...

that God has other plans than the one's i have.

that some prayers are answered and some are not.

that i have very empty arms and sometimes that ache is so real i think it may kill me from heart ache.

that i only have pictures and a video when i want to be close to my baby. i can't just cuddle her.

that darn squirrels and birds ate my seeds i planted so my Sophia flowers aren't going to grow here.

that i have to be a lesson to others to not take a pregnancy or baby for granted.

that babies/children die. (or for that fact- anyone that dies)

that we still don't have a diagnosis and i feel like a hassle to keep asking for it.

that i am jealous of others when all i want to be is happy for them.

in all this i am glad that God loves me no matter how i feel. that he is just there wanting what is best for me and does have a plan for me. that i can yell out in anger and all he does is hug me. sometimes it is so obvious the child and parent relationship we have with our God. he is MY FATHER. even when i am mad and feel so jacked up in my emotions.

well i congratulate you if you made it here. i know that wasn't pretty. thank you for loving me in my ugly time. (and if you are reading this and just had a baby or are pregnant and are my friend.... know that i adore you and love you and your baby more than anything. i may not always show it or be as supportive as i could be. just know i do. and please be patient with me.)

-t.d.

Team Sophia

so just wanted to get it out there, but we are running a 5k on July 30th as a fundraiser for String of Pearls (the wonderful organization that has helped support us through Sophia's birth).

it isn't necessarily a team event but we would like to have anyone that would like to join us!

We will have a Team Sophia! we plan on all maybe wearing the same color and enjoying a beautiful day in Parker together. (let me know if you will be coming and i will let you know our plans)

if you would like to join us you can register here----> www.parkerfamily5k.com

they have a 5K run, 3K walk or a kid's fun run.

hope you can make it out with us and help raise money for such a wonderful and amazing organization.

hugs- tristen

flowers and Zoe

so this past weekend nana and papa were in town visiting. since none of our family was here when we sprinkled Sophia's remains we coveted the chance to take them up to that mountain. it was the first time we have been up there since we were up there in February. i didn't know what feelings i would feel- but i just felt peace. i feel closer to her at home looking through pictures on my computer or watching the video of her birthday than up on the mountain/cemetery. nana came up with the great idea to sprinkle flower seeds up there as a sweet little marker of the spot. so daddy dug up the ground in that area and we all took turns sprinkling some seeds. i also took some seeds home and we are going

to plant some outside our house too. so we can watch them grow here

above is what we planted...

i don't know if i have mentioned this before, but we sprinkled her remains at Mount Lindo Cemetery (Olinger Chapel Hill Cemetery). it is on the top of a mountain just outside Denver. they have two sides- one facing into the mountains (where her remains are scattered) and then the other side faces Denver. the cross above is on the side of the mountain facing Denver. part of why we sprinkled her there is because you can see this cross that lights up at night that is at Mount Lindo from anywhere on the western side of Denver. we liked that when you look up there you can see the exact location. neat right?

of course after last week when i declared that i couldn't take the doggie search anymore because we wouldn't ever find a doodle mix and i was tired of crying over it. i looked on a whim before leaving work on wed. to my delight i found this cute little girl looking back at me. they thinks she is either a labradoodle or a Bouvier poodle mix, that is around 1 years old. we instantly fell in love with her along with loving that i didn't break out in hives. she is gentle and sweet. she was a stray and has obviously been someone's dog as she will go on run's with me and run right by my side. she is potty trained all ready and doesn't bark. AJ got her toys which she carry's around the house playing with. we are having so much fun with her. AJ just keeps saying how much he loves her and that i picked out a good doggie. her name is Zoe.

yep i put a bow in her hair! she was not a fan.

with her nemo toy.

i showed her a picture and told her about Sophia. i also told her that she cannot eat or destroy anything that is Sophia's or she will be in big trouble. she doesn't look she could do anything like that right ;o)

today i had a surprising sad moment-they sure like to sneak up on you. AJ was leaving for work and was telling Zoe bye, asking for a kiss and told her he loved her. i had a flash to what he would have been like with our daughter when he would leave for work. he would have been such a good daddy on earth to our daughter. he would have missed her and wanted pics through out his day of her. having Zoe has been nice- but it gives a painful reminder of how much joy Sophia would have brought to our daily lives. how there is a hole in our day to day moments where she is not here. that ache is still so fresh and painfully real. i knew getting a doggie wasn't replacing that pain. but it is a nice distraction. something to look forward to coming home to. someone to keep me company on the long hours that AJ works. she is a joyful presence in our home and adores all our affection.

this week marked 4 months since Sophia's birth/death. i wonder if this is kind of what people feel when you have another child after the loss of one. where you want to enjoy something new to love on, but you hold strongly to your child you lost. not wanting that child to be forgotten or over looked because they are not here to demand that attention. i am sure some day i will go through that and see what it is like. for now i find myself looking at more pictures of her for a sweet reminder of who came first and who holds such a big part of our hearts. and just for that you get another cute pic of our girl....

- tristen, aj, sophia and zoe