Today is brought to you by the letter B

Andrew kindly brought this home to me the other day....

He brought special attention to this fine print......

Don't get your hopes up, honey.

P.S. Author's note: I really am giving the B-vitamins a try. Heard great things about the energy-giving punch these guys have. I'm also going to be drinking green tea. More of this and less coffee (notice I didn't say NO coffee...just less coffee. *wink*) Lord knows, this momma could use all the energy she can get. I'll keep you posted.

October Memories

4:30 a.m.

So, it turns out the 2-year old molars are as brutal as their reputation makes them out to be. At least I think that's what Luke's issue is these days. Restless nights, refusal to eat, stuffy nose, intense puppy-like chewing and biting on anything he can sink those teeth into. It's gotta be teething right? Poor guy. And the beloved teething tablets we used to use at night have been recalled. Bummer.

It's been months since I've rocked my babies in the middle of the night. But, I was just in Luke's room doing just that. And while I am somewhat on the exhausted side, I so enjoyed holding my sweet baby. Feeling his little nose on my neck. Hearing his little breaths in my ear.

Rocking and humming and giggling and thinking......and thanking..

For the past two years October has been downright awful for us.

One year ago today, we traveled to St. Louis to hear a team of doctors diagnose Luke with Infantile Spasms. "This is rare. This is catastrophic. His prognosis is very, very, very, very poor. The seizures have to be stopped, although we should warn you, they aren't easily controlled. In fact, sometimes never controlled." We'll never forget that day.

Two years ago today, we were sitting in the NICU. The emotions and hour by hour stress of those days are almost too much to even think about. Luke's perforated intestines had been raging with infection. We watched his belly swell and the skin redden. Nurses would leave his bedside in tears. Doctors would order kangaroo care, not because Luke was healthy enough to be out of his incubator to be held, but because it was likely this would be our last time to hold him. During that month also, Luke's brain bleed caused hydrocephalus. Fluid was building up in his brain and a surgery was scheduled to put a shunt in to relieve the pressure. It was one thing after another that October. Two babies the hospital, two tired parents, a team of doctors and nurses working like crazy to do the best they could for our 2 pound miracles.

And here we are....it's October again. Caleb is a tall, energetic, feisty 2-year old ready to take over the world. Luke is completing 8 months of seizure freedom. His intestines healed. His shunt surgery never happened. His vision has improved. He's army crawling all over the living room and has the most adorable belly laugh. If you ask him how old he is, he'll tell you "Two" and spats off a handful of other words. We've spent the last month eating birthday cake and going to the pumpkin patch and swinging at the park.

I've been thinking so much this past month about suffering and struggle. About how much it changes us. We want out of it so quickly. But God has something different in mind. The past two years have allowed us a closeness and intimacy with Christ that we've never known before. After all, He is close to the broken-hearted. It's allowed us to see in each other a strength and endurance that we never knew was there. It's offered us a beautiful interaction with the Body of Christ. It's given us a chance to tell others what God has miraculously done. It's given us more compassion. ...a chance to be comforted so that we may comfort others. It's given a great longing for Heaven...where all will be made new and whole and perfect.

Loving this song right now.

Life really isn't a snapshot. If we looked at snapshots from the past two years, some would seem so hopeless, so painful. But, it wasn't the end of the story. God still had so much to accomplish..and still does. Whatever you're going through, just remember, it's not the end. Press on and fight the good fight!!!

Safety First

I decided to keep our boys rear-facing when they turned a year old. I had told Andrew that I did some research and that it was the safest choice. Now the boys are two and they're still rear-facing. The subject came up yesterday and Andrew asked to see some of the research I had read. I said, "Just Google it. You'll find all kinds of stuff." There's lots of convincing evidence out there. What's crazy to me, is that my pediatrician has never mentioned this to me. I've never seen any literature about it or any commercials on TV......nothing to educate parents on what to me seems like very important information to have. Maybe others of you have and I just haven't been paying attention....?

Anyway, here's just one of several videos we watched yesterday as we were looking through stuff online about this topic. Everyone has to make the choice for themselves. But, I think everyone should at least be told what the research shows.

**You'll see clips from the dummy crash test in this video. That's what convinced me!! Luke and Caleb will be rear-facing until they weigh 35 pounds. (unless I can find a car seat with a higher rear-facing weight limit!

Pay It Forward

I just got back from the grocery store. At the checkout counter, the customer behind me came and stood at my side and said, "Could I have the honor of paying for your groceries today?"

I smile and say, "You don't need to do that."

"But I want to," she says.

I agree and my eyes start to tear up. My cashier is a sweet middle-aged lady from Eastern Europe. Overhearing our conversation, she looks at me over her reading glasses and says, "Let me tell you something. This is why I came to this country."

I'm standing there looking at the items being scanned...diapers and meat...one of the more expensive grocery visits of the month.

The lady behind me comes over again and puts her hand on my shoulder and says, "I've had two miracles in the past two days. My husband has been declared cancer free and so has my friend. I just want to pay this forward."

I'm just reminded again how aware God is of our needs. There is no end to His faithfulness!!!

Thoughts

To Everyone who follows this blog, my apologies.

Initially, this seemed like a wonderful idea. This blog writing stuff I mean.

Initially, as in.....before mommyhood got CrAzY busy.

It's always been busy I guess. I mean there are TWO of them and only ONE of me. I'm not sure what exactly happened except that nap time isn't what it used to be. And nap time used to be mommy time. {grin}

The thought has crossed my mind that most of you who read this blog are probably my friend on Facebook and so perhaps this isn't necessary. Why have a blog if you're not going to post?

But, I can't do it. Can't NOT have this blog.

It's for family. It's for friends far away and friends close by too. It's for me. There are no baby books started. :( Just a day planner that's jammed packed with therapy sessions and doctors appointments and play dates...and somehow I've managed to scribble in a few things I'd like to remember....like "Caleb's first tooth" and "Luke said Momma today" Even though it seems like I could never forget, I know I will. And so, these blog entries serve as reminders of those kinds of things. I write also for the strangers who happen upon this blog. In fact, maybe mostly for them. I've been a 'stranger' before......browsing through the intimate details of someone's blog who I'll (probably) never meet. But we shared something in common....twins or the NICU Nightmare or seizures or raising a special needs child or our Christian faith...... And I've found myself hanging on their every word. Finding information. Finding laughter. Finding Hope. I trust my entries will serve the same purpose....for someone, somewhere who might happen upon this blog.

So, I have some writing to do. :) Little by little, I'll get caught up.

For now, Happy Fall!!! It my favorite time of the year....I love it.

Sharing The Journey

I've had the privilege of connecting with some other families in the area who are raising children with special needs, many of them similar to Luke's challenges. When I say "connect" I mean mostly, chat on Facebook or over the phone or on our blog sites. Most of them, I hadn't yet been able to even meet in person.

Tonight I got to hang out with this...may I say...EXCEPTIONAL group of moms. Wow. What a great evening!!

It's always an amazing feeling when you can rest in the company of someone who walks your same journey.

Growing up as a missionary kid, I had some great friends. Some American. Some Italian. Some international friends from just about everywhere! There was nothing quite like hanging out with another missionary kid though. I can remember so clearly how freeing and :::sigh::: just 'burden-lifting' it was to be with another kid who was living my reality. I could relax. Let my guard down. I could finally stop answering stupid questions like "So what language do you guys speak in Italy?" and have a real conversation instead. I could just BE. Be myself and not have to explain this crazy (yet very enjoyable!) life that I was living.

When I entered my teaching career, I realized again how wonderful it is to have friends who just know. There's nothing like a fellow teacher friend. She understands that your work day doesn't end at 3:30. She knows that the stack of papers to grade never goes away. She, more than anyone else, knows that teaching isn't about just passing along information, but figuring out how each child learns and that's NOT an easy task. Fellow colleagues understand the complete exhaustion that comes along with teaching elementary children. The challenges, the frustrations, the inexplicable JOYS of teaching that keep you coming back year after year.

And now, once again, I'm finding myself resting in the presence of moms who just know. That's it....they just get it. There's no need for explanation. What bliss!! I guess I didn't realize how much time you spend e-x-p-l-a-i-n-ing when you're the mother of a special needs child. It's all for good....family and friends want to get inside your world.....doctors and nurses and therapists all need to know nitty-gritty details. Strangers and passer-byers will always have their questions and comments. It's not that any of this is bad. I'm so thankful for such a supportive community who WANTS to be a part. It's just...well, work. Sometimes, it feels like so much work. But not tonight. Tonight was just one special-needs mommy in the presence of another. No need to explain a diagnosis...or therapy regimens, or medications, or progress, or lack of progress. These are moms who understand the fears that come along with raising a child with so many needs.....who understand the work load, the worries, the frustrations. They Just Know. They know what it's like to go to bed feeling guilty that maybe you didn't do enough today. That's the question that always haunts us. Enough. Did I do enough today to help him be all that he can be? Have I researched enough? Are we doing enough therapy? Am I doing this whole thing RIGHT? These moms know that old friend, Grief, that comes around every now and then. Though time (and Jesus!) makes things better, there will always be that grief for what could have been. The grief you feel when you look at your weekly schedule and wish your son could just be a regular 'ol kid doing regular 'ol kid stuff instead of hours of therapy and doctor's visits. They're the moms that know what a miracle is. I'm talking about the everyday miracles. Not walking on water miracles. The other ones that most mommies miss. These are ladies that understand what it's like to be so overwhelmed at times at the task set in front of us. But, like me, they wouldn't trade it for the world. Cause these special kiddos are teaching us more about life, more about love, more about God than we even dreamed possible.

And when you meet another mommy who is on this same sort of journey, there is nothing quite like it.

P.S. If you are a parent of special needs child and have happened upon this post, I encourage you to check out exceptionalfamilytv.com. You will find weekly episodes featuring families around the nation raising kids with special needs and a whole host of resources available to you. I think you'll find it very encouraging to connect with others who walk this same road.

Do You Hear What I Hear?

F-i-n-a-l-l-y got into an ENT about three weeks ago. My suspicion was correct and about 5 seconds after the doc looked in Luke's ears, he said, "Oh, we need some tubes in there!" I was one happy mamma. If he hadn't recommended tubes, I had plans to persuade him in that direction. :))

Luke failed the hearing test in both ears. Actually, both ears have so much fluid that neither ear drum is moving at all. Thankfully, this hearing loss should all be resolved once we drain those suckers TOMORROW. Surgery time is bright and early in the morning, which we are totally fine with since most 21 month olds aren't too keen on pre-surgery fasting. ;)

Will keep you updated on how things go. This is surgery #6 for Luke, so I'm actually feeling pretty calm about this whole process. (Is it terrible that surgery is old hat to us?! Ha!) I'm just thrilled for him to finally get some relief. And with his vision already being limited, having normal hearing again will, I'm sure, be music to his ears. :smile: