Howdy! It's Been A While...

Well, hello there! I know it's been a while since I last posted. A long while. I really am lacking in several areas - one of them being updating blogs and websites in a timely manner! I can't believe that two years have gone by since I last posted here. Doesn't seem possible. But alas, it is. Skyler is now SEVEN years-old! We are so incredibly blessed! That's her...over there...to the left :) She's always been amazing, and to us, amazingly ethereal in her beauty. That hasn't changed any. Age has actually enhanced all of her attributes. I believe so much more than the so-called average child. There is a very wise essence that dwells within and around her...and it grows and expands each second, I believe, she is with us.

This year has been a bittersweet one for us. We are beyond thrilled that Skyler celebrated yet another milestone birthday with us - but we are also so incredibly saddened by the fact that she has lost three of her dearest friends this past year, two of them within two weeks of eachother just this past May. I hate to say that we become used to the passing of young, beautiful children...because we don't. But I think sometimes, being parents, loved ones and caregivers to fragile children, we are able to somehow block out the excruciating pain and acute awareness of the fragility of life as a whole while we go about our daily lives. A child passes and we feel it so intensely, we find it almost unbearable to continue on...yet we do. I know that I, personally, have become quite adept at compartmentalizing the different aspects of life. When a child in our community passes, I allow myself to feel it - for just a little while - and then I place that emotion, that pain, the reality of the disease in its special compartment - to be dealt with again on another day. Or not at all. I guess it's a survival mode of sorts. I need to keep going, in order to provide my child with the best possible life. Although I think it's important that she sees that I can emote, I also think it's crucial that she not always be reminded of the fragility (boy, I like this word today!) of her existence. (Remind me to tell you the tale of the Rage-Filled RT [respiratory therapist] someday!) There are some instances, however, where it is extremely difficult to hold back, to place certain feelings in their pre-assigned compartments. This was the case for me - and for many others - during the Month of May...

Miss Lily, we love you and miss you SO much! Not only are you one of Skyler's dearest friends, but your Mommy is one of my bestest friends in the whole world! I ache, not only because you are no longer here with us on Earth, but because your Mom aches. We both know you are okay, running and flying and dancing and eating lots and lots of ice cream - but it doesn't dull the pain any in knowing that your Mommy will never be able to wake up to see your big, beautiful eyes staring back at her. Nor will she ever again experience your bossiness, as you demand that she switch out movie after movie - until she finds one that pleases you ;) You will always, always be an inspiration to us all - as the good-time gals who were always out and about having the biggest blast of a time. Forget education, Miss Lily (we all know you did...lol) - ENJOY life! THAT is one of the many lessons who taught us while you were here!

Miss Skylar E....otherwise known as Big Sky to my Skyler's Lil' Sky :) You, too, have been such an amazing inspiration to us all! You, my dear, on Earth, were the epitome of a true fighter! How many times did you die and come back to us? THREE, I believe?? Whenever the doctors thought you were down and out, you sure showed them! You showed us ALL - that NO ONE, not ANYone, can tell us when we will die. You energy is still so incredibly powerful, Miss Sky, and you continue to touch and inspire us all - and provide is with an enormous amount of strength and stamina to keep battling for those we love! By the way, I betcha you already know where you got that strength from...huh? Your Mommy is one of my closest and dearest friends - and she is also one of the strongest people I know! Like Lily's Mom, Amy, you and your Mom have always been one of THE best SMA Tag Teams in existence! Together, you battled - and you won. I have always been in awe of you - all FOUR of you!

So, as you can see, we have learned and gained volumes of love, inspiration, strength and knowledge from our tiny fighters! What they lack in muscle mass, they make up for in spirit! My Skyler tells me often how her little friends come to visit her (in fact, she knew about the passings of her friends Kalair, Lily and Skylar before I did!)...and I am SO comforted in knowing that these angels, along with her pal Angel Gilly, and her g-tube buddy, Timmy, are watching over her daily. I feel them and their strength of spirit working through my child! Skyler may be one of the tiniest pixies ever to be seen (even in the SMA world!) - but she is one of THE toughest little cookies I have ever encountered!

I'm going to take a moment here to mention my other two lovey-poos, Lucas and Casey :) I don't know what I'd do without them - or my hubby, Jeff! Lucas is 13 now - and Casey is 11, quite the feisty little lady! We are still homeschooling...and the kids are doing really well with their learner-directed studies. Lucas is becoming quite good at stop motion photography/animation. I'm really proud of him and all that he has accomplished! Casey is a a voracious reader - and an incredibly good writer. She just might get published before I do! Oh, and speaking of being published...kudos to my Daddy! His first-ever published book, The Rebel and the Rose, is doing really well in sales - especially down South. In it, he and his partner, Gerald White, solve a Civil War mystery: whatever happened to the confederate gold that disappeared at the end of the war? It's really a well-written piece of work - and my Dad, who has honed his writing skills over the years writing for others - does and excellent job of taking fictional material and working it so that it reads like non-fiction. I am really VERY proud of him!

This year, also, my sister and her husband adopted two little boys from Ghana, Africa: Koku and Mensah. We are just thrilled for them! Both boys are incredibly adorable - and bright - and we were fortunate to spend 10 days with them recently during our annual family vacation in Maine. It really was a joyous celebration - of life and of our beautifully diverse family! The only thing that was missing was my brother and his wife, and our niece, Zoe, whom we haven't been able to see since last July :( Hopefully, we will be able to catch a glimpse of the gorgeous munchkin next month! It's funny, when you are more confined to your quarters, NY and DC seem to be worlds away!

Okay, so it's time to run. Casey's room needs a good cleaning - and since much of my stuff is stored in there, as well, it's up to me to get the bulk of it down. Of course, the old juice boxes and candy wrappers aren't my responsibility, but...hey...you gotta do what you gotta do! I'll just smile (and grimace internally) - and be happy that I'm still blessed enough that those boxes and wrappers are there - because I'm fortunate enough to spend another second (albeit a grimey one!) with my kids!

Blessings to you all!

Kim

Hey There!

Okay, so this is my first blog entry...and even though, as the title of this blog states, it's Time to Muse, I'm not quite sure what I should Muse about at this time :)

My name is Kim...or MommaKim, MommyKim or just plain Mommy. I have three children, one of whom lives with the disease Spinal Muscular Atrophy, Type I (SMA, Type I). SMA is a pretty darn serious disease, and my daughter, Skyler, has the most severe form. Sky was diagnosed at the age of 8 weeks, and was given just months to a year to live. The local docs didn't want to do anything for her...they offered us no options, other than palliative care (which is letting "nature take its course"). For us, that was not an option for our daughter at the time. We combed the internet, reached out to families and eventually found a treatment plan that worked for her. Sky turned 5 years old on Tuesday! So much for diagnoses based on diseases alone. Sky is just cruising down her own path and we're just going along for the ride :)

I just turned 40. A milestone. A BIG milestone. I, along with my fantastic husband, care for Skyler 24/7...we have no nursing. I also homeschool my other two children, which I really enjoy. Honestly, I do. We're literature-happy in this family and we base the majority of our curriculum around the literature we read. It's great. Of course, it can be trying at times, homeschooling three kids (one of whom is basically non-verbal, with little movement...but very, very bright!), but I do enjoy it. I like my kids. I really do. But as 40 rapidly approached...and then zoomed by me, catching me, firmly, in its grip, I realized that I needed to start doing something for me. I don't mean personal vacations, days at the spa or kickboxing courses...just something that allowed my mind to travel...expand...and express itself. Thus...this blog :)

So, here I am. Welcome. If anyone happens to read this...enjoy it as much as you can. I like visits (especially ones via the net, so that I don't have to clean my house!). Email me if you want. The computer is my friend, sort of like a Siamese Twin :) It's also my doorway to the outside world...and it is almost always open!

Peace,
Kim