Things I've Learned from Spina Bifida

As I was putting Rachel down to bed last night, I realized that her AFO's needed some adjustments. The velcro was coming off; the moleskin was wearing thin; the straps needed some trimming. So, I sat down to do the work of refurbishing an AFO, and I realized, this is something I couldn't do "before".

In many ways, my life has been sliced right down the middle, now marked by "before" and "after".

Now, I can refurbish an AFO. I ever KNOW what an AFO is and does.

Now, I can tell you what "Myelomeningocele" means. Heck, I can even spell it without looking it up.

Now, I can insert a cath, at least for a little girl.

Now, I can rearrange my schedule to fit in four therapy sessions week.

Now, I can fully explain Hydrocephelus, a VP shunt and tell you the signs to look for a malfunction.

Now, I do a butt-flap.

Now, I can get in three massages on little toes that don't wiggle.

Now, I think ahead and make sure there will be a cart (store) or take my stroller.

Now, I know that sneakers are really the only shoe option for my little girl. No cute little sandals or little ballet flats.

I know to find shoes that fit well over her AFO's.

Now, I can put on a rhino brace for the hips. (And by the way, wouldn't it make more sense to call it a "hippo brace"?)

Now, I can laugh.

Now, I can be thankful for life.

Now, I can praise God for everyday gifts.

Now, I can find beauty in the malformed.

Now, I know that life is more than feet that work.

Happy 4th Birthday J-MAN!!!!

Dear Joshy,

Today you are four years old! Where has the time gone? Is seems like just yesterday that you were a sleepy little baby, and now, you are a "Star Wars boy", always saying something to make me laugh or smile!! I love you!!!

January Blah's!!!

These are a few of my favorite things (that help me get through this dreary time):

Rachel's Latest Appointment

Yesterday (Monday, January 11), Rachel had a "routine" appointment with Children's Hospital of Pittsburgh. About every 4-6 months, we take her to the Spina Bifida clinic down there. If Rachel needs any testing done, it occurs in the morning, and then all afternoon, we sit in one room and her many doctors visit her to see how she is progressing.

A year ago, Rachel underwent all of her Urology testing. Everything seems to be working well, but we need to check just to be sure. That is not something that we want to miss. So, in the morning, she had a renal sonogram, an X-ray of her bladder/ kidney area, and then some blood work done.

Even though we have no reason to doubt and Rachel has not had any urological problems, I always get a bit nervous. There certainly COULD be a problem. But, thank God, all of her tests came back clear, and we don not need to see Urology until next January.

All of her other appointments went well; Neurosurgery and Physical Medicine do not want to see her for another six months.

And, we got in and out (including the tests in the morning) in about 4 hours. That's NEVER happened! Usually we are there about 8 hours.

Thanks God for a great day!!!

God's Grandeaur

(view from my front door)

It's very easy for me to see the glory of God through nature in the Spring, Summer and Fall, but I struggle with Winter. I HATE snow! I hate to be cold! I hate to go out in it, to be bundled up and rush from one warm enclosure to another.

I know, I know, I know...I live in the SNOW BELT! In fact, I live in the snow belt of the snow belt! We get so much snow, it is sickening! When the national news covers the bad weather areas of the country, it is ALWAYS my neck of the woods here featured. It often starts snowing here in October, and we don't see green ground until May. (This is beside the point I am trying to make, but each year my undiagnosed SAD (Seasonal Affect Disorder) seems to get worse and worse. Right after Christmas (like the day after) I get in a funk and can't shake it until sometime around May, April if I am lucky.)

So, my first point is...I hate snow! My second point is, I am struggling to see God's Glory in it all. I know that creation screams his presence and his praise...but really...through snow?

Those of you not afflicted to live in a "tundra" may think, "It's so pretty. It's so white and pure." Well, you spend some 6 months seeing only "white" and then let's talk! I feel so far from God, lost in this "Narnia"... I really wish we humans could just hibernate like the animals; it might even help my figure!

As I drove home today, I was thinking that I won't have warm weather until probably June. Truly folk, I cannot plant my garden until AFTER Memorial Day...

So, I was driving home, thinking about how long until it's all gone, then I had another thought...FROSTING!!! The snow/ ice looks as if everything is frosted (as in, the kind you can eat). Now, I LOVE my sugar, namely frosting. That is my number one weakness. Ice Cream for my husband, chocolate for my kids, frosting for me...

As I started to look at it all through fresh eyes...God loves his frosting too. And I guess he must REALLY love us here in NW PA, since He's given us an extra portion! Crazy thought, I know, but it keeps me going...Whatever works, right?

New

It's a new year, a new decade, a new day...so many unspoken possibilities...

I think about what my life was like a decade ago. I was a single, lonely girl with no husband-prospects, thinking I was destined to live my life alone when all I really wanted was a husband and children.

Here I am ten years later with my cup so full, it splashes over. This has been the BEST decade of my life. Period. Spina Bifida and all. There have been some things that have knocked the wind out of me, sending me to my knees but nothing that has felled me.

Why? you may ask? You were given some horrible news this past decade, things people never should hear. You are still dealing with the aftermath of that disaster and, unfortunately, will be for the rest of this earthly life...and your daughter will too...

(Here's my response...)

Therefor, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary trouble (yes, even Spina Bifida!) is achieving for us an eternal glory that far outweighs them all. So, we fix our eyes, not on what is seen but on what is unseen. For what is seen is temporary, but what is unseen is eternal. (II Cor 4:16-18)

Life stinks, for all of us...I am not ignorant of that fact.

BUT, I also am very cognizant of the fact that there is a God who passionately loves me.

I find that I get the most depressed about Rachel's condition when I start thinking about it, when I focus on how tired I am, how much works it is for her, how far behind she is, how much my back aches when carrying her...when I focus on all that, I am overwhelmed.

But when I fix my eyes on Jesus, and think that we all CAN endure this for a little while, and I think about all she will be able to do in Heaven, I can go on, and yes, I may even have some joy.

**By the way, I am convinced that God has the biggest and the best playground reserved in Heaven for kids like my daughter, kids who are never going to fully use the playgrounds here on earth. Heaven's playground has the tallest slide, that reaches waaaayyyyy up into the sky, and the longest monkey bars...

My hope is in the fact that *this* is not as good as it gets, that there is a God who walks with us here and gives us hope for tomorrow through the person of Jesus Christ....

See, we forget one of God's specialties...He makes it all new!!!!

Winter!