Practice Makes...

...well, not PERFECT, but definitely better! We're still working on the dexterity needed to self-feed with utensils, but as you can see, Miss Ellie is definitely getting the hang of it. I don't know if we're ready for tomato (ie: RED and stainy)-based spaghetti yet, but it's comin'!

Fun With Southern Grandma

When Grandma comes to visit, there is much spoiling! Just the way it should be!

Give Peace A Chance

Climb, Climb Up Sunshine Mountain

Did you sing that song in Sunday School? It's cute.

As the title conveys, I am still climbing, and I even have a bit of sunshine in my spurred boots these days. Perhaps it’s a result of REAL sunshine and nicer weather (which is apparently supposed to change tonight, as they’re forecasting stupid SNOW later today!). I always feel a bit doom-and-gloom-ish during the early spring, when winter lingers and the sun sits behind the clouds. Add to that some emotional thunderstorms and it’s a bad combo.

I don’t have the time or energy to write a heart-wrenching novel today, so, I will stick to a few 411 bullet points, as a bit of a life update:

*No news from St. Louis yet. I DID see that our package arrived and was signed for on Monday, so now we wait...

*I’m feeling pretty hopeful about Dr. Park’s assessment. Cautious hopefulness, but hope nonetheless. My latest worry (because I have to have at least ONE) is about the finances. I think that this surgery is offered in Canada (BC), by someone much less experienced than Dr. Park (who also performs a more invasive type of SDR, requiring more recovery time and a larger incision). I don’t want to go to BC, I want to go to St. Louis, to a surgeon who’s performed over 2000 of these surgeries! The problem is, unless we can convince one of Ellie’s doctors to plead our case to our insurance company (the government), and maintain that this exact surgery is not being performed in Canada, we won’t receive any funding from them. If they deem this surgery unavailable in Canada, our insurance will pay for 75%, which could amount to $30,000. A HUGE chunk o’ change. We’d still have to come up with close to $20,000 out of pocket, but that seems so much more reasonable than the entire $50,000. Oh my word. Fifty grand. Here come the heart palpitations…

*I’m going away for the weekend. Yay me!

*Ellie was hilarious this morning and it did my mama-heart good to see her giggling all the way to daycare. I don’t know what was in her morning milk, but the girl laughed all the way to the sitter’s, and was excited to see her friends and her precious childcare provider. Sweet, sweet Ellie.

*I love my job. I really do. I love my hours, I love the people I work with. I could not be more career-blessed right now.

*Most of all, I feel REALLY REALLY blessed by the amazing people in my life. Richie is freakin’ fantastic. I have exceptionally wonderful family (minus one or two weirdos). I cannot find adequate words to tell my precious girlfriends how much I love them and their listening ears. I am surrounded by angels in human form. It’s a whole lotta goodness.

Signed, Sealed, Delivered

The package of medical records and video tapes has officially made its way to Missouri for Dr. Park and his team to use in their evaluation of Ellie's candidacy for SDR surgery.

Hi yi yi, am I nervous.

When Richard and I were church-shopping in Dallas, we happened upon a, well, more charismatic church than either of us were used to. The congregation was doing a door-to-door witnessing campaign, and the "How to become a Christian" pamphlet was stuck in each of the bulletins. That Sunday morning, the pastor asked each person in the pews to lift up their bulletins towards heaven and pray on that piece of paper. It felt extremely weird and awkward to Richie and me, needless to say. We are more conservative in our worship, and I had never even thought to pray over a piece of paper.

Well, y'all, let me tell you that I prayed over that paper envelope yesterday at the post office. I'm not sure if I'm ready to give up my conservative worship stripes yet, but I felt compelled to pray yesterday. I've never mailed such important papers before. I want angels to cover that package and speed its safe delivery. I want God to be present when Dr. Park and his team go through each disc and each piece of paper.

So, that prayed-over Express Mail envelope is somewhere between Lancaster, Minnesota and St. Louis, Missouri right now. I am convinced that angels are surrounding it! How fortunate for the postal truck driver!

You can join us in prayer if you so desire. Pray that the medical team will be wise in deciding whether or not this surgery would be beneficial for Ellie. Pray that the sacred envelope won't sit on Dr. Park's desk for *too* long. Pray that I'll have the strength to accept whatever decision he makes. Pray that we're doing the right thing.

It's Spring, It's Spring!

Richard's mom came to visit this week, and thankfully, the weather was welcoming. While I was working, Southern Grandma and Richie took Little Miss Ellie to the neighborhood park for the first time this year. She LURVED it!

Ball-Therapy in PJ's with Bedhead

(Hmm, is the title referring to Richie or to Ellie?!)

Truth Be Told

Ok, confession time. I'm having a hard time dealing lately. Just plain DEALING. I'm struggling. Struggling to stay positive. Struggling to reconcile hope with reality. Struggling to see the future with optimism.

Dr. C's report came in the mail today. He's the physiatrist we saw last month; the one who said that Ellie would never walk (well, it was his therapist who said those exact words, but obviously he was in some sort of agreement). I know that he is ONE doctor, and that he hasn't seen Ellie at her best--when she's relaxed and exuberant. I read the first page of the report stoically, but my heart stopped when I turned to page two, and saw this opening sentence:

"We have discussed different options with family. These included dorsal rhizotomy, which I don't think is appropriate at all."

Gulp.

Dorsal rhizotomy, of course, is the surgery that we are desperately pursing with Dr. Park in St. Louis. The surgery that, although covered with transparent nonchalance, I am holding out an incredible amount of hope for. And here it is, in writing, and on its way to each of Ellie's doctors, the fact that her physiatrist thinks it's a terrible option.

I am so pickin' sick of these bubbles bursting. Every time I think there's hope, it's quickly dashed by the slice of a letter opener. Every time I think Ellie's improving leaps and bounds, I'm run into by a "typical" 3-year old, talking in 10-word sentences. Every time I think I've come to terms with my life as a mom to a special needs kid, I hit the brick wall of acceptance, and realize that I'm actually miles away from the door.

I throw my hands up to heaven and ask, "WHEN WILL I BE OKAY?"

WHEN WILL I BE OKAY with Ellie in a wheelchair?

WHEN WILL I BE OKAY with Ellie being in special ed?

WHEN WILL I BE OKAY with Ellie moving into an ACL (assisted living) house when she's 20?

WHEN WILL I BE OKAY with giving up the dream of being mother of the bride?

WHEN WILL I BE OKAY with not needing a college savings account?

WHEN WILL I BE OKAY with the possibility of spending so much on therapy and out-of-country surgery that we'll have nothing left to buy a sibling for Ellie?

WHEN WILL I BE OKAY with buying a mini van because it's the only vehicle that easily stores a wheelchair?

WHEN WILL I BE OKAY with giving up the fight, and honestly revising the dream?

Because, truthfully, I'm NOT okay right now. And, I'm not quite ready to give up fighting. I'm just really tired today. My spirit is weak, and my psyche is bruised, but deep down, I know that Richard and I need to keep fighting. Fighting for this surgery. Fighting for more therapy. Fighting Ellie for just "one more step" in her walker, one more painful stretch, or one more word.

Sometimes, selfishly, I wish I WAS okay. I wish I was able to accept life as God's given it to me. Spend time cuddling instead of pushing. Hugging instead of forcing. Relish the moment, instead of anticipating the future.

I'm just tired.

Because We Need a Funny Picture To Lighten The Mood...

Calling All Faithful Readers!

Well, okay, maybe only select readers; not because I don't love ALL OF YOU like stink, but because only some of you will be able to answer this question for me.

I know there is an "underground blog world" of those parents whose kids are special needs, and it's YOUR advice I need right now.

For those whose children are in wheelchairs or using walkers, what type of flooring do you have and are you satisfied with the durability?

We have decided to go ahead with the installation of either hardwood or laminate flooring this summer (we currently have carpet throughout, AND a sunken living room; both of these are non-wheelchair/walker friendly). I think that hardwood *looks* much nicer, but I'm afraid that it will be easily scratched by a wheelchair or walker. Laminate doesn't seem to scratch as easy, but any sort of liquid spill could cause it to 'bubble' (with the amount of snow Ellie's wheelchair or walker will see, I'm sure there'll be some residue left to melt on our floor).

Apparently the average Home Depot employee doesn't have a disabled person living with them, and has not a hot clue as to which of these flooring materials are more durable.

So, help me out here, people! Mucho thank you in advance!

So Close, Yet So Far Away

You know that my heart is YEARNING to hop in the car, say hi to our trusty border patrols, and zip on down to Grand Forks this afternoon. Why? Because both Barack AND Hillary will be speaking to the masses this evening!

As the headline reads:

It's Presidents Day In Grand Forks

How great would it be to see and hear the future President of the United States in good ole Nodak? Oh, my eyes would sparkle and my heart would burst.

BUT (there's ALWAYS a but...). I'm sick. Ellie's sick. It's a 2 hour drive, with a who-knows-how-long-of-a-wait-at-the-freakin'-border, and there's not a hotel room to be found in the the sprawling metropolis because it's the opening day of the World Curling Championships (how amazing would it be to hear Obama and Hills AND THEN watch some world class curling? It would be like a banquet AND a dance! Too much happiness!).

So, today, I will keep drugged up on Dayquil and antibiotics, consoling myself with the fact that my Democratic hopefuls are a mere 130 miles away. Then, I will turn on the TV, flip to the ever-so-amazing and well-funded Grand Forks channel and listen to the speeches via that medium. If I close my eyes tight enough, drag the most uncomfortable chair in the house to the living room and sit on it, I may even pretend that I'm in the Alerus Center Arena, live with the candidates.

And then, I will turn to the sports station and fall asleep to some curling.