A Merry PICU Christmas (#SMA)

So, we decided to bring Em to the hospital. We're praying it will be a Merry Christmas at home, but either way Belly is now on her way to Nashville with my parents to be with the rest of the family.

I'm not going to bother counting all the Holidays we've spent in the hospital, but this will make 4 Christmas's in 6.5 yrs. At least we're keeping tradition! We are super thankful this is only the second PICU visit in just short of 2 years, so we'll knock this out and get back home before Santa has a chance to start hibernating.

We're not sure what's going on, but this season has been tough on kids, even more for kids with Spinal Muscular Atrophy (SMA). With all the RSV going in we didn't want to risk it.

Thanks for your thoughts and prayers. We'll be updating most frequently on Facebook but I will post summaries here.

Linnea: Anniversary # 7 (#SMA)

It's been 2, 557 days since Linnea meet Jesus and we still think about her constantly. She seemed so perfect in many ways, despite her weakness from having Spinal Muscular Atrophy (SMA). I can't believe she'd be 8 right now! :)

Lynn Wheeler Golf Tournament for Emily!! #SMA

We are getting pretty excited here at the Lee home. In less than a month we will be heading down to Georgia, once again, to take part in the Annual Lynn Wheeler Golf Tournament on 10 Oct!!! Doug and Lynn Wheeler, and everyone that participated last year blessed us beyond measure by holding the event for Emily. We are humbled by the fact that Emily has again been chosen as the beneficiary of this year's tournament. The Wheelers are an amazing family, and we were so happy to get to know them a bit last year.  Keeping up with Lynn's updates throughout this year has been quite encouraging in the midst of all that life brings. Thank you so much Lynn and Doug.  You both are an incredible testimony of love and Godliness to us all. 

So, if you have some time - we'd love for you to come and join us this year at Planterra Ridge Golf Club in Peachtree City, GA for the Lynn Wheeler Golf Tournament. Details for the tournament are in the images below, but you can also click on the above link to check out the Facebook page for the event. 

I also want to thank Joseph Starr for his insane planning abilities, and for bringing this entire event together. Jojo - you're amazing. See you in GA!

Linnea - Another year gone by #SMA

It is that time of year again - when we remember what we have lost - Linnea - she would be 8 years old today. The reality is - I'd prefer to not have the experience to blog about, but on the other hand I would not give up the time we had with her. Figure that one out. I attempt to make sense of this daily - like maybe I "know" something I didn't or I look back and say that I have gained something positive or "grown" from it - but unfortunately, feelings of loss are far greater than intangible feelings of growth. This is not doom and gloom - it just is.

Today, we just exist - and move on as if it's any other day - only feeling substantially heavier - like weights are attached to our feet, thoughts, hands, heart, eyes - and any other physical/metaphysical thing that makes us utterly self-aware.

There is one silver lining for me! Thanks to modern technology it is easy for me to look at these pictures and remember her deeply. Thanks for checking in. Down with Spinal Muscular Atrophy (SMA)!

HAPPY 6th B'day, Emily!!!

Emily had a GREAT time sailing for her B'day today. So amazing that she is 6 years old now!! The Baltimore Sailing Center did an incredible service for Emily by taking us out - and to think, they do this regularly for disabled kids. Completely awesome. Thank you so much!!