Thursday, August 15, 2013

How many kids do you have?

I am proud to be a daddy -- and I am a proud of my kids. So, when there's an opportunity to reveal that I have kids, I usually take it: 
  • "You have kids?! I thought you were like 20!" 
    • I pretend to understand that they think I look young - but I'm man enough to admit they they're really judging my maturity. No biggie. 
  • "How old are they?"
-- In a meeting it's like this --

  • Them: So Nate, what's your analysis of the situation?
  • Me: (chuckle)
  • Them: What's so funny? 
  • Me: You said Urinalysis. LOLz. I shouldn't laugh - it's a bad example to my kids.
  • Them: Ha! You have kids?! How many
  • Me: I sure do - 4 actually.
  • Them: How old are you? 
This brings me to the purpose of the post -- as most of you know, today is Linnea's B'day. She would have been 10 - years - old. Whether because my brain preserves itself through selective memory, or am I just "getting old," it now seems a lifetime away when we last held her in our arms. A life without a script to lean on, but has largely defined who I am today... for better or for worse. 

Diana and I were only 24 and 25 years old when Linnea passed away. At that age we were faced with many decisions before and after Linnea's death that I will never understand how we made - but I remember making one defiant decision that I am happy to have honored consistently -- I will always include Linnea in the number of kids I have. Numerous are the conversations I've had about my kids, Linnea's death, other people kids, and the death of other children. Endless will the conversations be about coping with the loss of a child. And you know what, that's ok -- in fact, it's more than ok because it gives a grieving parent a purpose that nobody else has a right to fulfill. 

To a parent asking how to deal with the loss of her child - asking if the pain will go away -- here was my response:
The pain becomes less intense, but it doesn't go away. I would say that it is different now -- before Linnea passed my life was not defined by the tremendous struggle of my child dying. Now my life is defined by that pain - what I do with that pain is a different story. 
For instance, I WILL ALWAYS say I have 4 kids. This inevitably leads to questions like "how old are they" - to which I answer and mention that Linnea passed away at 13mos in 2004. I struggled with this for a while b/c it felt like I was forcing sympathy on myself - but the reality is, I was worried about social comfort - I should not be ashamed that a child of mine has died - it is a fact... as much as the number of living children I have is.  
For me - this is a way to "cope," but also is a constant reminder of how proud I am of the life Linnea had - and I continue to talk about what she was like.  She is still a part of our family. :)

Happy Birthday, Linnea!!

Friday, December 21, 2012

2012: Another year when the world didn't end

So - the Mayans predicted we'd all be dead today - but we're still alive. That is good. :)

It's been a busy/busy/busy year in the Lee household. If you haven't kept track on Facebook (I realize we're not all glued to it) - we have moved, had a new baby boy, had some birthdays, had some golf tournaments for Emily, took a vacation to Quebec! ... it's been epic.

I want to specifically direct your attention to the 2012 Annual Lynn Wheeler Gold Tournament for Emily. This is the 3rd year in a row the Wheelers have gifted us with this tremendous blessing. Suffice to say, we are completely humbled by the pouring out of time and money to help Emily's life be even better that it already is. We have been able to purchase medical equipment, upgrade our van, and pay off medical debt from the results of these tournaments. Lynn, Doug,
JoJo, and EVERYBODY else who make this happen every year -- God bless you and yours. Really, you are examples of selflessness and we are overwhelmed with love for our family. Thank you so much!

On Aug 19 our precious little Zachariah Trust Lee entered the world at 9lbs 7oz / 21.75".  Yeah - I know (or, Diana knows), that's >2lbs heavier than any of the other 3!!! Zach is amazing. It's been ~9 years since we had an able-bodied infant - it's nearly like being new parents again, except our stress level doesn't rise as fast - probably b/c we're to exhausted from everything else - but also b/c we're amazing parents. ;) Zach is growing fast and at only 4mos he is ~18lbs and 27" long. He is our happy-go-lucky baby, as long as he's being held. Ok he likes his jumper too, but who doesn't, right?  I know I like mine.

Emily and Annabelle continue to be amazing:
From school, to Cello, Piano, Theater, Pioneer Girls, friends - Annabelle stays pretty busy -- and without a skip takes over some of the responsibility caring for Zach, and even taking some responsibility to keep Emily safe. I don't think when I was "almost 11" I was anywhere near mature enough to handle as much as she does.
Emily has remained quite healthy with only a few issues this year. She is making good progress with her teachers, and loving loving loving Zach... and life. Emily's always such a joy to be around and take care of. She has a nearly permanent smile and giggles... always giggles. We've had some nursing woes to get through, but all is well -- :)

Diana: What a wonder. I don't know how she keeps this up. From nursing (like the mammary kind, not care-taking), to Emily's 24/7 care, pumping, feeding the fam, keeping everybody on schedule, running errands, making sure homework gets done - and music practice... :/ ... I can't think about this very long or I start getting grumpily overwhelmed ... I think she's a super-hero. I don't know what else to say about that. Diana, you are amazing.

So that's all I have from the home-front. We hope you all have an insanely MERRY CHRISTMAS and an equally festive New Year!!

Sunday, August 19, 2012

Zachariah Trust Lee

Zachariah Trust Lee
8/19/2012 @ 1451
9lbs 7oz - 21.75"

Wednesday, April 11, 2012


Monday, February 13, 2012

A Tribute to Good Home Care Nurses

As we have encountered dozens of nurses through Linnea's life as well as Emily's, and through our SMA community, we have heard endless stories of horrible home care nurses, the tendency is to conclude that they are a horrible batch of so called professionals that can come into our lives and make our children's already fragile lives worse. This conclusion is often defeating and beyond frustrating for us parents who need to be able to count on someone besides ourselves and our spouses to take care of our medically fragile children. These "horrible" nurses bring with them laziness, attitude, constant cell phone chitter chatter, deceit and act as if we should be thankful that they have bestowed upon us their un- "knowledgeable" selves. Often times, we parents just can't take it anymore and give up searching for good nurses, to take care of our most precious little angels. With that being said, Emily is now 6 and a half and she has had some incredible nurses come into our lives, some who have stayed, and some who have moved on. I want to share this because so many parents we know have given up looking, and they desperately need some relief, so maybe hearing some good experiences will help alleviate all the bad.
Amidst all the no-go's, we have been blessed with Palvine- dedicate and trustworthy, who has been with us for almost four years now. She is one of the few who knows my precious girl's history. I don't have to explain everything to her. She's been around and has seen it herself. Krissy-super fun PICU nurse who took care of Em for two years, is no longer our nurse but is an incredible personal friend now. She is also our emergency contact for Emily because we know she will know what to do if we ever needed her. Dettra- loving and on top of her game, who despite living several states away, makes herself available if I need her for a special occasion, just for her Emi-boo! Tandy- dedicated and hard working- who has made a huge effort to get to know Emily in her own way and is one of our current nurses. Taboko- has a really sweet and kind disposition and loves our Emily and is one of our current nurses. Connie-sassy and smart, she takes care of Emily on an as needed basis.
With the little description that I shared of each nurse, one of the biggest blessings that these nurses have been is more than being a nurse to Emily. They have all become my friends! As isolating as it can be to be a mother of a young child, it's even more so when you have a special needs child. You don't fit in anywhere, and no one really knows how to relate to you. There isn't much time to invest in friendships, and for this season in our lives, often times, it is more take than give coming from our side. With that being said, not many friendships are even made, much less that last.
So in my prayers a few years ago, I asked God for friendships, not many, just a few, and as our Emily has grown bigger and stronger, God has lined my friends up one at a time. One day I realized his creativity, and I was amazed. So this is a tribute to all the amazing women called nurses, who have a big enough heart and integrity to not only take care of my Emily well, but to share their hearts, minds and lives with me, so that I have friendship and personal growth when I least expect it. Thank you Palvine, Krissy, Dettra, Tandy, Taboko, and Connie, most importantly for honoring the profession of nursing, but also for being my friends, walking buddies, sounding boards, shopping partners, cooking critics, and most of all, for being you.