Sunday, July 31, 2011

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)

Tuesday, July 26, 2011

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

Thursday, July 7, 2011

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.