Thursday, October 23, 2014

Getting From A to C by Way of B

I know.

Not exactly a one step pathway is it?

Does it surprise you, though, that I would have to get from point A to point C by taking a jaunt to B?

It shouldn't.

It shouldn't surprise me either...

but, it still does.

(Flash back clouds and music inserted here.)

Since we moved here 2 1/2 years ago, Sister had been with the same teacher for 2 years. What a blessing. Her teacher, Ms. O, finally was really understanding Sister, Fragile X and all of the combination of the two. It was great. There was no more explaining Fragile X Syndrome to her teacher and explaining how it affects Sister and blah, blah, blah...

That's what it feels like sometimes when I have to tell about Fragile X over and over and over and over again.

Sister was comfortable with Ms. O, I was comfortable with the comfort level of Sister and Ms. O, and it was starting to get a little bit easier knowing that Ms. O just understood Sister. It was so nice not to have to "blah, blah, blah."

Then at the end of May this year Sister's teacher announced that she was quitting!

At the school race this past spring.


"No!!!" I cried in my head... OK, it really was out loud... several times... to my friends, neighbors and family.

I don't want to go through this whole thing again when things were going so swimmingly!


I pouted most of the summer.

Sister pouted on the days she was not in summer school.

That made me pout more. Which made me feel like we had been betrayed by Ms. O. How could she do this to us, couldn't she have chosen another career choice after her prized pupil had graduated from her class?

Then, a few weeks before this school year started, I got a phone call from her new teacher, Dr. H.



I've had to teach a lot of doctors what FXS is and I was ready to explain it all to this one too.

Me: "Hi, Dr. H. This is [Sister's] mom, Rachael. I am returning your call..."

Dr. H: "Yes, I was just wanting to get to know Sister better so that I can be better prepared for this school year."

Me: (in my head) Oh great he's already been informed about Sister and wants to know what tactics to use for each behavior and situation... ugh! I'm not in the mood to explain FXS today... (out loud) "Well, she has what's called Fragile X Syndrome... have you ever heard of that?"

Before he answers I have my response formulated and I am ready to go into my educate mode.


Dr. H: "Yes. I know what Fragile X Syndrome is."

Me: (in my head) Ya, you probably remember the 5 minute blurb you read about in your doctor text book, let me broaden your horizons... "Oh, really. That's something I don't hear very often! How have you heard about Fragile X Syndrome?"

Dr. H: "I worked with Dr. Randi Hagerman for a few years at the M.I.N.D. Institute in Sacramento."

Me: (in my head) What? Is this guy for real? Did he just say what only my dreams could imagine? (out loud) "What?!! For real? You worked with Dr. Randi Hagerman? This is like a dream come true!"

Dr. Randi Hagerman is one of the most known and most knowledgable doctors in the world of Fragile X and is HIGHLY respected as an advocate and clinician for Fragile X Syndrome. I couldn't have thought of a better situation myself!

In talking with Dr. H further I discovered that he and his wife were on the research team that worked a lot in studying the affects of FXS on girls.


Here was this trial at the beginning of the summer that brought on anxiety and a little bit of anger and I couldn't understand why God just couldn't let me have one easy summer with Sister by allowing her to look forward to being with her favorite, Ms. O after summer break.

I just couldn't understand what the purpose of the trial was and got frustrated with God.

I wanted and easy A to C route.

Heavenly Father wanted me to appreciate the journey and the small trial made the little coincidence of Dr. H falling into Sister's life, look more like a miracle.

Now to another situation, where, I pretty much left things in the Lord's hands and said, "Hey, Heavenly Father (we're close like that... I just say "hey" and he's like "wassup?") I want to be in a play. My back is bad, my life is busy, and my kids are needy, but I really need something for myself. I am just going to put this in your hands and if I make it that will give me the faith that it's all going to work out."

I made it into the play, as you know.

Photo by Mark Philbrick, Courtesy of Scera

I thought this would be my miraculous recovery story of how my back was doing so much better and life at home would be nearly perfect.

Two weeks into play rehearsal and my back started experiencing pain that I have never felt before. I was suffering physically, mentally and emotionally because of it.

Again, I complained to the Lord and asked him why he would give me the joy of the play and then make me suffer through it.

I was so mad and frustrated and confused.

But, I found so much joy in the play that I just kept getting through it. I had scheduled surgery to be done after the last night of the play and I had received a post-surgery back brace to help me through the pain.

The pain was getting so bad that I became desperate that I begrudgingly went to a alternative medicine doctor that my cousin recommended.

One "adjustment" (I call him the witch doctor) and some vitamin K for my restless leg and 2 days later I was on the mend. I was able to start doing my yoga and elliptical again.

You know what they say about back surgery? They say, don't do it unless you absolutely have to. It's painful and is a long recovery (6 months for the type of surgery I need). How was I gonna do back surgery and my lifestyle with 3 special needs kids?

But, my pain was horrendous. I saw no other option besides surgery.

I had it scheduled for tomorrow.

I cancelled it last week.

I was so happy and thrilled being in the play that there was no way, unless I was paralyzed, that I was not going to be in it. During the run of the play my back started feeling so much better after the witch doctor adjustment that I was able to do the last 3 shows without my back brace.

Heavenly Father knew how much pain I was going to be in and that I would want surgery ASAP. It must not have been the right time to have surgery, because he got me through the most extreme pain I've ever faced and now I can hopefully not have to have surgery anytime soon.

I just have to have faith in the Lord's timing.

And don't worry I apologized for giving him the "what for" once I started seeing how things were working out.

I'm not saying that I won't ever do the surgery.

I may have to one day.

In fact, I keep joking that he just needs me to wait until we get through this Parade of Pumpkins thing and then the extreme pain can come back...

Anyway, these two little journeys reminded me of a little video clip and I want to share it with you so maybe you can see that we shouldn't just assume that God has forsaken us during our hardest trials but is giving us peace of mind that what happened was what was supposed to happen.

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