We're still here

Sunday, February 8, 2009

Sometimes I get really excited about blogging, and other times, like the last couple weeks, I really haven't wanted to.  This latest "break" has been extra long, I know.

I have a post that I've been thinking about doing and know needs to be done, but I've procrastinated writing it.  

In the last month, we've had a few friends tell us about how their friend/family member just found out that their baby is not "normal" - that they have Downs Syndrome or Trisomy 13 or another rare genetic disorder like Caroline, that their child will be different, possibly even not be with them at all.  We get told about these circumstances a lot, because we are expected to be able to relate better than most can.  People ask if they can give our number/email/or blog info to their friend in case they want to talk with someone about their story.

When I hear that someone else has received similar news that we did, my heart gets so soft.  I want to be next to that mother and hug her and just listen as she shares what she's going through.  I want to tell her so many things.  I want them to call us or email us, etc.  But I also know that many people offered that to us when we first had Caroline, when we were told she had Trisomy 18 and wouldn't live, when we were told she would live with a 1 in 4 million rare chromosomal disorder, when she was in and out of the hospital, when she needed a trach, etc.

And most of the time, with a few very important exceptions, we didn't have the emotional energy to reach out.  Our feeling at the time was that our situation was so rare that no one could really get it (this isn't what I think anymore - few people really get our situation, but many can empathize w/our emotions), so what was the point.  We especially felt like this when we thought Caro wouldn't make it to her 1 month bday.  

But, I did have the energy to search for and read websites/blogs made by parents of kids w/special needs. So I've been wanting to write some words to that mother, and, as you might imagine, it's something that requires a bit more emotional will than, say, a post about my latest recipe find...thus the procrastination.  

And w/o meaning to, I've kind of summed up what I wanted to say to that mother in the title of my post - we're still here.  We're still here, we've found happiness again, we still have so much joy in our life.    I've learned the value of letting the future take care of itself when it comes to Caroline.  However she turns out, however long she lives, whatever developmental milestone she reaches or doesn't reach, I will love her and she will always be my beautiful girl.  

I would tell that mother:

What you've been asked to do is so hard.
Hopefully, you have a patient, loving, tactful, sensitive and courageous family around you.  (If not, tell them to get on board asap: ).
Try to ignore some of the stupid stuff people say.
Tell your story to those you can trust; it really does help to talk it through.
Ask for help, and be specific - people want to know what's going on and they want to help but they may not know what you need.
It's ok to ask "Why?" 
Some friends, for whatever reason - usually because they just don't know what to say - will distance themselves from you, but you will form other precious friendships that you never expected to find.
You'll get a lot of information about special programs, support groups, financial help, etc; don't worry if you can't absorb it all in the first few weeks and months - it will work out.
Keep a journal; just something simple.  You'll want to have a record - you'll look back and see the Lord's hand guiding you.
It helped me to record every stat of Caroline's and every move the medical team made (weight, height, O2 sat, new medicine given, latest news from the doctor) - writing that down helped me keep track of what was happening and it helped me stay busy.
Cling to your spouse; he or she is the only person on earth who knows exactly what you're going through.
You are stronger than you think you are. Seriously.

It's hard to quantify the lessons I learned/am learning. 

There will always be an ache in my heart - grief for the loss of a dream and the denial of great expectations, grief that we won't see Caroline reach typical milestones, that she has to live life in such a fragile body and that we can't hear what she's thinking or feeling. But, the intense sadness and, let's be honest, despair that I used to feel has dissipated.  

What is left in its place is love and gratitude.  I'm so thankful that the Lord considered us worthy enough to have been blessed w/an exceptional spirit like Caroline's.  I'm so thankful for the lessons she has taught me, for the character I've built, for the person I'm becoming because of her.  I'm so thankful for the deepened love and bond that Caroline has brought to our marriage.  The Lord has given us countless tender mercies along with the hardships.  My testimony of the Savior, of the Plan of Salvation, of the gospel has grown so much stronger and deeper. 

While I wish Caroline could be "normal" now, I know that, someday, she'll be whole and perfect.  Bryce and I will get to be with her and raise her and see the exceptional person she is after this life.  Because I know that, I wouldn't change what we've been given. Caroline is a true blessing.


  1. thank you. that is beautiful. we love you all and think of you often. you are amazing. love, mindy

  2. Wow. I'm so glad you wrote that. It's going to reach more people than you know and help them understand that God is really in charge. You guys are the type of parents I strive to be. Thanks for sharing.

    Daniel and Hanna

  3. Thank you for being so inspirational and so positive. It shows what a great person you are for facing this with a positive attitude.

  4. Erika - you just get it. I love your perspective, always. Your beautiful and inspiring words touched my heart. Thank you.

  5. Thank You for sharing..You truly amaze me.

  6. This post was beautiful...and I agree 100%. Thank you for verbalizing it...I was thinking it but you brought it to life.

  7. Erika, I'm just now reading this post and loved it. I agree with all the other comments, but what SUZ said comes closest to my thoughts and feelings. You do get it!!! You have an amazing eternal perspective (and I know you're worked at it along the way--but you're there--really there!) Your words are beautiful--articulate even--and very inspiring! And they always touch my heart!

  8. You are seriously one of the most amazing women I know. You inspire me to be better and remind me of all I have to be grateful for. Thank you for sharing. I miss, love, and think about you often.

  9. I just found your blog, my cousin had a baby this past weekend. He was born with brain damage, I am going to share your words with him and his wife.

    Thank you


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