mid-Feb update

Feb 15th -- it's about as mid-Feb as it can get ;)

We're doing well. When typing that I don't know if I'm lying to you and myself, but it's what came out of my head, down my arms, and out of my tapping fingers. Yesterday I was not feeling too hot, but today is another day. I've gained some perspective on life, worked through some pain, regained some strength, and now I'm looking forward to tomorrow. That's pretty good, don't you think?

Emily's been causing the joyous part of life these days. It's always tinged with a bit of grief too, but maybe all joy in this world is tinged with a little feeling of grief... sometimes it's just not as apparent b/c the situation doesn't focus on it -- but with Emily, every moment has at least a tiny amount of awareness of the weakness difficulty that Spinal Muscular Atrophy (SMA) brings. Too much happiness causes coughing and extra secretions... too much sadness does the same. Giggling is the best. :) Giggling is GREAT! and Emily can giggle. Sometimes she just lays there by herself and giggles -- I like to think the Holy Spirit's telling her a funny joke, or just letting her know that He loves her - so she giggles for joy. I love it when she giggles.

Emily's new favorite word is "GO!" "Ready, Set,... 'GO!'" She loves it. It takes some energy to get it out. It's cute and sad in the same instant as I watch her contort her little body as best she can do get that breath deep enough to make a good "GO" sound when she releases. She's learned that we love it to, so when she wants something to change, out of boredom or whatever, she says.... "GO!" You probably wouldn't know she's saying GO b/c it sounds like a lingering "G" - but she's saying it alright. It's not the only thing she says with her mouth, but it's the thing she gets the biggest response out of. :)

Ok -- so the practical "what's been going on" part of the update:
  • Emily - we feel like she experiencing some increased weakness, but unsure of whether or not it is SMA, her new and unusual sleep schedule - or lack thereof, medication starting to not work anymore, PICU recovery. We just don't know. Regardless, she has been a happy-go-lucky girl that keeps putting smiles on people's faces. :)
  • Annabelle - she growing into our little lady - with a continued sassy streak. Annabelle is a very loyal friends and turns out to be quite popular with the boys. :/ Time to get a shotgun!
  • Diana's busy being everything wonderful -- Mom, Wife, Cook, Cleaner, Shopper, Nurse, etc. She's not taking any classes this Spring so she won't be distracted while Emily's recovering from the PICU stay, but we'll try to get her back in class soon.
  • I'm busy trying to finish up this semester's classes and preparing for the next set in addition to everything else. Hopefully I will be done by Aug -- it will be nice to be done!
  • Cindy continues to be a great Aunt, Sister, and sister-in-law with all the help she provides. She's looking around for her next adventure, so we may lose her soon -- but it will be good for her to get on with things. She just loves our kids and it's a blessing!

Thank you for your prayers. I get notes here and there encouraging me to write another update -- thanks for the nudges. We can get so steeped in stuff around here that I forget to blog.... can you believe it?! Me? Forget to blog?? -- Thanks for stoppin by.

Peace <><


Sky said…
Nate I understand everything you put up, but I think you are like me in away where you try to focus on what she can do and what she will be able to do!!! The things our kids do can be so very small to the unknowing eye, but to us... they move mountains. Ill keep you guys in our prayers and Ill pray for renewed strength in Emily :) You guys are doing a wonderful job!!! Great BIG Hugs Sheila and Skylar (and dont you dare forget to blog) ;)
Nate said…
YOU ARE QUICK!! Thanks so much, Sheila! I love Skylar's smile. :)
Sky said…
ok me again now all the pictures are up... they are awesome, oh my gosh that black and white of Annabelle is stunning, your girls look so very happy, you my friend are blessed!
Aiden's mommy said…
Nate, we understand completely. It seems every happy moment is also tinged wtih sadness. Aiden's first birthday was hard because we realized all the things Aiden should be doing but cannot. But then Aiden smiles and I have to remember that if he can smile, I have to as well!
Give Emily and big hug from Aiden and I
Dawn Bundy
Anonymous said…
Love the pictures! Looking foreward to your mom's visit next week. She always has fun things to tell about the girls and makes us more aware of your complex lives. Love from Aunt Mari and Uncle Dan
Tina said…
It's great to see some new pictures of the girls. I hope Emily's strength will come back soon. It is great that she is saying "go." The little things our kids can do means so much and their expressions and look in their eyes makes it all worthwhile. Keep up the wonderful job as parents!!!

From - Tina in Chicago
Anonymous said…
I love hearing about the giggles. Thanks for sharing what is happening in your lives. Your family is a blessing to us.

- Yetta and the Nowak's
Anonymous said…
Thanks for updating Nate. The girls are beautiful. You and Diana are doing an amazing job. Our children give us so much strength, strength that only SMA parents truly know. You guys are in my thoughts and prayers!
Nate said…
Hello and thank you so much for checking in and for your support. :) We pray all is well in your world's!!
CureSMA4Stella said…
Nate and Diana,
You are amazing and we look to you with such admiration! We haven't met you YET but we can't wait to do so! We relate to every word you said. With SMA, it seems that we are so thrilled by a little bit of increased strength or perhaps less secretions, only to find that a week or two down the road, we are back to dealing with what we were before. We too have recently noticed that Stella doesn't move her arms as much ... and it's always so hard to know what is going on in their bodies. Maybe it will return and maybe it won't. They bring such joy, just as much as our healthy children bring us. We try to focus on the things she CAN do but there are ALWAYS days where it's always hard to be positive. We are here for you, thinking of you every day and praying for your beautiful family. Great pics--thanks for updating. Hugs from Sarah, Travis, Treyton, and Stella ;)
Anonymous said…
nate, you are correct, with joy, there is sadness. didn't jesus live his life on earth this way? we all try to be just like Him, yet he was/is the most hated man on earth and yet, we think we should have all happiness and no heartache. we rejoice in trials, because it brings us that much closer to Jesus. I know you and Diana know this, it's not a lecture, just wanted you to know that Mike and I understand. I wait for that glorious day Jesus tells us it's time to go home!
Nate said…
Thanks to everybody (Sheila, Dawn, Dan & Mary, Tina, Yetta, Shana, Sarah, and Jana) for your kind words and support. You all are great and have a special place in our hearts. Thanks for your prayers!

Amen, Jana -- no lecture taken - you are right. We DO have so much to rejoice and be blessed in - and I can hardly wait to "go home!!"