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Wide White: The path forward

Friday, February 25, 2011

The path forward

Now that we know what we know - that our little girl has Turner syndrome and isn't likely going to survive more than a month or two - what do we do now? What do the next few days or months look like? What does the immediate future look like? Of course, there are still things we don't know for sure, but we have to start to wrap our heads around what the short term will look like.

I've had over 10 times the normal number of visitors to my blog reading the story of our little girl over the last 2 days. We're humbled to say the least. And while this blog has been and will continue to be a tool used for us to communicate what's going on, fundamentally it will still remain what it's always been.

This means that among the updates on Kaylee Hope, there will be occasional stories of Carson and Keira. Tomorrow, as with every Saturday at 6:45 AM, a video will be posted here that I scheduled weeks ago. At 6:45 AM on Sunday there will be another weekly photo. Monday through Friday I'll post on anything from politics to faith to casual or humorous observations.

Of course, updates on Kaylee Hope won't go away. And for those of you who are here only for those updates and aren't interested in the other things I write about, I've assembled and will continue assembling all of my posts on Kaylee Hope in the right sidebar under the heading, "Our Journey with Kaylee Hope." Hopefully this helps those coming to this site for those updates with an easy way to read her entire story without filtering through the other content I post on here in case that doesn't interest them.

Right now, we simply need to respond to all of you. We've had an amazing outpouring of support. We have Facebook messages and posts and chats, tweets, text messages, phone calls, and emails to reread and respond to. I apologize for our delay in responding but we've really had more than we've been able to adequately address. Our hope is to spend a few hours in a coffee shop this afternoon before picking up our children to organize those responses and respond to as many of them as we can.

From there, we have a lot of decisions to make and some settling down to do. We're doing our best to live life vivaciously with our baby girl, but reality is we have to plan for the worst. What's hard is we don't want to think about these things, and yet we don't want to regret the decisions we make. You can't reverse decisions like burial vs. cremation vs. whatever other options exist. I'm having a hard time even wrapping my mind around it right now and accepting that it's a decision I need to make. I just tried entering a Google search for "options for disposing of a"... I couldn't finish the search. Go ahead, try typing it out yourself. Try to actually put those words on the screen. Then try pressing "enter," knowing that search is now saved in your Google search history, knowing that when you start typing "options" the remainder of what you searched for is going to show up. Consider that every web resource you've visited for dealing with this is now in your browsing history, showing up when you start to enter any website that starts with the same letters.

This is just a small part of what's going through our minds. I'm sorry if that depiction seems too real and too personal, but it's a small part of what this looks like.

And there are so many similar decisions. We have to figure out who our care provider will be for our weekly visits going forward. I'm trying to think of how to maintain professional and personal boundaries with my clients at work, who will need to know that I'll be out of the office unexpectedly sometime in the next few months. And of course, some of them already know that we're expecting a baby in July, so I need to figure out how to respond when they ask about her. We need to find a balance between taking people up on offers of child care and meals because we're really in need of it and setting aside family time alone together with normal everyday routine.

The road forward will simply not be the same. Jamie gives me a card every year for our anniversary with reflections on the past year. The card she gave me last night included this:
Part of me feels like this was our last "normal" year and to finish this letter is to acknowledge that moving forward we'll never be the same. I know that it could be a really good thing, but I'm not there yet. Right now I'm just really hurt.
I think more than anything we'll simply find a new normal. This experience leaves a stamp that I don't believe will ever go away. While my posts about Kaylee Hope will be fewer as time goes by, I don't imagine they'll completely go away. She'll stick around in some way, whether it's through future reflections on coping with grief and pain or celebrations of her life on her future birthdays or when we hang her ornament on the Christmas tree.

I don't know that the path forward will be dramatically different from the path we've traveled, but I'm sure there will be new scenery along the way. I was recently reflecting on how easy my life has been and how little turmoil I've really experienced. I can count the number of funerals I've been to on one hand. This is all so very, very new.

Regardless of what the path forward looks like though, it will include Kaylee Hope. She's a permanent part of our lives and I'm so thankful for her.

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8 Comments:

Blogger Keithslady declared,

The path forward...what it makes me think about is how many people reading your posts may have to go down, or have gone down a similar path. They may have the path looming up right now but don't know it. Tomorrow, as much as we think it will be a continuation of today, may be way beyond our wildest expectations. The older I get, the more I expect the unexpected. I recently shared with a young woman that it seems as if change is the only thing I really expect. I used to feel that life held permanence. Now I don't. There really is only one Rock. And it's not earthly.

For me, the path forward is purple. I will be wearing something purple every day as I wait for Kaylee Hope. Right now, purple turtle neck, purple earrings. I love you.

2/25/2011 9:18 AM  
Blogger Kate Gunderson declared,

Another beautiful post about your little beauty. Thank you for sharing the details (even the ones that are hard to read). It gives your family and friends a clearer picture of what you are dealing with and helps us share in the grief and joy of Kaylee Hope. Sending hope, love and prayers from Woodbury.

2/25/2011 9:42 AM  
Anonymous Ashley W. P. declared,

I have read all of the blogs on your little Kaylee Hope. I cried as I read your journey through hell with the most remarkable outlook I have ever experienced. Your little daughter is a well loved little one. She is fortunate to have parents like you and Jamie. I believe that your clear love for each other and your little one will help in the healing process. Though it is impossible for me to truly understand what you and Jamie are going through, I felt the pain in your words. But there was also strength. The strength to see the good in a situation that most could only see the bad. The strength to have faith and hope when those virtues seemed to have been stripped by circumstances. I have never met Jamie and haven't seen or talked to you in many years, but I will hope with you.

2/25/2011 10:12 AM  
Anonymous Aunt Kari declared,

I love you.

2/25/2011 11:30 AM  
Blogger Jodi declared,

I'm so sorry. I'm crying so hard words fail me right now... heartfelt prayers are coming to ya'll.
Jodi in NC

2/25/2011 12:53 PM  
Blogger Carla declared,

Your love makes me want to be a better mom, a better wife, a better friend. Life is short and we do not know how much time we have. You are cherishing your time together! I love you White family. What a blessing you are to be sharing your lives with us.

I'm crying again!!

2/25/2011 3:12 PM  
Blogger Juliacooks declared,

Joey and Jamie, I just wanted you to know that I am praying for you and beautiful Kaylee. I cannot imagine what you two are going through. Here are the words to my favorite verse and song.

Psalm 139:13-14
For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.

CRY OUT TO JESUS
To everyone who's lost someone they love
Long before it was their time
You feel like the days you had were not enough
when you said goodbye

And to all of the people with burdens and pains
Keeping you back from your life
You believe that there's nothing and there is no one
Who can make it right

There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus

For the marriage that's struggling just to hang on
They lost all of their faith and love
They've done all they can to make it right again
Still it's not enough

For the ones who can't break the addictions and chains
You try to give up but you come back again
Just remember that you're not alone in your shame
And your suffering

When your lonely (when you're lonely)
And it feels like the whole world is falling on you
You just reach out, you just cry out to Jesus
Cry to Jesus

To the widow who suffers from being alone
Wiping the tears from her eyes
For the children around the world without a home
Say a prayer tonight

2/25/2011 6:51 PM  
Blogger Our family declared,

so sorry for all that yo are going through, so glad you are finding ways to enjoy Kaylee Hope. Please get a copy of this book:


I will carry you
by Angie Smith

http://www.christianbook.com/will-carry-sacred-dance-grief-joy/angie-smith/9780805464283/pd/464283?item_code=WW&netp_id=753461&event=ESRCN&view=details

2/26/2011 4:41 PM  

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