He Who Writes the Biographies of Strangers

And even the very hairs of your head are all numbered.  So don’t be afraid; you are worth more than many sparrows.  Matthew 10:30-31

In our little “happy” packet of papers that the hospital gave us when our daughter was born was the brochure to mail in for a life insurance plan for a newborn baby.  I innocently thought, “Great, I’m home for three months maternity leave, I have time, I’ll just fill out the paperwork and get three months of free life insurance.” 

I'm Worth It!!!

Four weeks after her birth, we got the “official” diagnosis for Evie; the diagnosis that she had a rare genetic condition called WAGR Syndrome.  A week after that, I got a phone call from the insurance company asking “routine” questions about our baby; how things were going and if she was healthy.  “You noted there was an issue with her eyes.  Is she otherwise healthy?”  I told them about WAGR Syndrome; what I could, and referred them to the www.wagr.org website.  They sent the application into review.

Consequently, it was in December of 2004, that we had the first indication that our daughter’s mortality was much more a threat than others as she was declined coverage for life insurance.  I cringed at the added disclaimer to this denial, as though it would ease the pain:

This by no means reflects on the future success and health of your child…we must ensure low premiums to our families.

(I still find a sense of joy in adding up the now ten-years worth of premiums that they have lost by not covering Evie under their plan.)

Truly, I realize that our little girl’s life came with no more guarantees than anyone else’s.  But, having it written on paper, from a company known for the “baby-face” on its food jars made me feel like the company was saying that our “baby’s face” wasn’t worth the risk. 

However, while one multi-million dollar company may say “not worth the risk,” the King of Kings and Lord of Lords who walked this earth over 2,000 years ago looked into the stars above, counted the hairs on her head; numbered her days in the Book of Life and said, “Her…I’ll die for her.  She’s worth it.”

He who writes the biographies of strangers, he who organizes the universe with his words, he who purposely weaves strands of DNA on a mystical loom of grace…He gives us the ONLY insurance policy that really matters.  It’s underwritten by a carpenter’s son and signed with the blood of a Lamb.

Questions to Ponder:

Have you had to face your child’s mortality in a very real way?

Have you thought about Jesus going to cross just for him or her?

Have you shared this Good News with your child?   

Close Encounters...We are Aliens Here on Earth

Do not oppress an alien; you yourselves know how it feels to be aliens, because you were aliens in Egypt.  Exodus 23:9

Some days I feel like I am living on a totally different planet than many of my other friends.  I'm talking about IEP's, medications, genetic testing results, chromosomal and genetic deletions...am I a scientist or a mother?

When Evie was first born and diagnosed with WAGR Syndrome, I felt like E.T. in a California suburb.  I was just hoping I'd see someone who looked familiar, someone with whom I could communicate.  

My favorite scene from E.T. is where the kids take him trick-or-treating.  E.T. spies another kid dressed up as Yoda and he starts to follow him saying, "Home!  Home!"

Our Annual Photo: My fellow WAGR Mom and Partner in Crime, Julie

After three years of feeling like an alien on foreign land, I met my "alien" family in Manassas, VA for the annual gathering of families of individuals with WAGR Syndrome.

WAGR Weekend...  It rolls off the tongue, and quenches the spirit.  As my husband had said, "We always feel like a minority, but here, in this hotel this weekend, we're the majority."

God never said we would always feel comfortable and welcomed in this world.  Actually, he suggested that if we feel comfortable, we might be on the wrong track.  However, while we may not always feel like we belong, he has not left us alone.  

God has given us families here on earth.  He has given us a chance to support one another, to gather together, to celebrate and belong.  

Our Second time to WAGR Weekend was in 2009

At WAGR Weekend I feel lighter than air.  I don't have to explain my child to anyone.  Literally, there are a handful of parents there who know Evie as well as I do, because they have already raised a child just like her.  Even the siblings feel at home, because they are seeing kids and adults just like their own brothers and sisters.  

If you haven't found a networking group, or a support group that you can join, I encourage you to do so...whatever your unique situation: cutting, depression, chronic pain, addiction, disability...the right support group can work wonders for your spirit.  

Give yourself a chance to fit in.  Give yourself a chance to be at home in this foreign world.

WAGR Wednesday! Nine Inch Nails~Not!

Happy WAGR Wednesday!  I think I’m succumbing to the cold that is going around here in our little town, so I will cut to the quick on this one.  (Pun TOTALLY intended.)

I’ve heard other parents of children with WAGR say the same thing:  I’ve never had to clip her nails.  That holds true for me as well.

Sure, when Evie was a baby, before she cut her teeth, I would clip her baby nails with those teeny-tiny tweezers.  But, when she was starting chemotherapy, the doctors and nurses had instructed us not to clip her nails, because if they were cut too short she would be susceptible to developing an infection through a small cut.  She was 15 months at the time, and I haven’t cut her finger nails since then, in over 8 years.

Evie bites her nails incessantly.  Of course, it’s hard for me to judge because I have nail-biting issues of my own.  However, hers are chewed down to itty-bitty nail nubs.  I’m certain that it’s all a part of her anxiety, but it still makes me so uncomfortable to watch her gnaw away at them.  We’ve gotten her “chewies” and “chewelry”, rubbery items which are intended as occupational therapy for those with sensory-seeking behaviors (part of Sensory Processing Disorder).  But, for Evie, there is nothing as satisfying as the real thing. 

 

On the flip side, Evie’s toe nails grow at a curved-in angle and RAPIDLY.  If I don’t keep on top of their growth, I come to find that she has broken them off jaggedly, or they have grown almost into her skin with the curvature that they have.  This, again, is a similarity which other parents have observed in their children with WAGR.  

That’s what’s crazy and fun about our on-line support group.  We might, without realizing it, mention something about our children, like the nail-biting, and then a chorus of voices chimes in with “Me too!  That’s what so-and-so does!”  I call that the “Me Too” Bird. 

Maybe that’s what I’ll write about next week on WAGR Wednesday; the sighting of the rare “Me-Too” bird which happens every year on WAGR Weekend.  When you are so used to being “the only one,” but then you find yourself in the presence of a whole “rare species” of others; well, it’s magical (and only 6 months away!).

If you have a WAGR topic you’d like me to write about, feel free to post it in the comment box below!

Satan Must Want This Family Pretty Bad...

Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace.  In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.  Take the helmet of salvation and the sword of the Spirit, which is the word of God.  Ephesians 6:14-17

 

I can honestly say that the first time I felt angry with God was when Evie had to have a fourth surgery on her left eye.  She was not even a year old yet, and we were looking at three surgeries over a three and a half month time span.  I felt frustrated and angry. 

I had a mental spat with God.

My Dad; the Protector from Evil

 

“Haven’t I been positive enough, God?”

"Haven’t I learned enough?” 

“Haven’t I been an example of your strength?”

Then my dad emailed me and expressed the same anger and thoughts.  He went on the write, “Satan must want this family pretty bad.”

There it was!  I had completely forgotten about Satan!  I had been living the gloriousness of God’s Will and mercy for a few months, and had forgotten that Satan was a power at work in the universe.  Satan was fighting for my soul…

I had forgotten to put on my armor…

Every day that things went well, I laid my head down and fell asleep with nary a thought as to how I would fend off the Evil One the next day.

We can’t let the Devil get a foot hold in our hearts. Satan is fighting for our souls, and he will go to great lengths to deceive us and distract us.  We must keep our eyes turned toward God.  He has commissioned us to a high calling and we must be obedient servants who put on the armor with which he provides us.  

I’ll leave you with some questions:

When have you felt angry with God?

What has helped you dig out from depression, frustration, or anger?

When have you felt God was at work?  When have you felt Satan was at work?

How do you put on YOUR armor?

 

Sometimes "Choice" is a Dangerous Chance to Take

This week is School Choice Week...

Sounds pretty, doesn't it?

For many people, school choice is a wonderful thing.  It's a good way to drive schools to be "better", to be more competitive, to reach for higher heights.  

But for this mommy of a daughter with special needs, and an Individual Education Plan (IEP); school choice sounds like a fancy way of saying, "We can take your kid, and the money that comes with her, but provide her with little that she actually needs."

In the state of Wisconsin, a battle has been going on FOR YEARS over the continued attempts to create a Special Needs Voucher bill (possibly with wording has changed and the "name" of it from time to time, but still contains many of the same ideas.)  I kid you not, this thing NEVER DIES...I've written letters to leaders, editorials in papers, and sat in on committee hearings...the bill will whither and fade away because of the persistence and passion of hundreds of parents and advocates, but it JUST.KEEPS.COMING.BACK...

 Can you say Freddie Krueger?

Don't believe me?  You can follow some of it's history at the official blog page for the grassroots group Stop Special Needs Voucher!  It's a great account of what's been going on over the past three years, at least. 

So, why, you may be asking, does this idea scare the living daylights out of me? (It has nothing to do with me imagining it as Freddie Krueger).  It frightens me because I know that the IEP we have for my daughter, the IEPs that many of my friends have for their kids, the IEPs that are protecting them, advocating for them, ensuring them the best education possible, are completely at risk once they leave the public schools.
 
Check out this informative site: Understanding Special Education
It says here that the district will still evaluate the child and make recommendations, but that doesn't mean the private school has to follow any of it. 

So, with a Special Needs Voucher; as they continue to propose here in Wisconsin, the money for a child with special needs would get sucked out of the public school and given to the private school, but that private school wouldn't even have to get the student the therapies or accommodations she or he needs.  

Do you know what that would look like in OUR life?  My daughter receives vision services, orientation and mobility services, additional help for math, reading, music, science, social studies...she has a speech therapist, and an occupational therapist on consult...are you going to tell me that a private school is going to hire all of those people for little old her if they aren't REQUIRED to?  

"Tammie, have a little faith..."

Oh, I have faith...don't worry, I have faith.  I also am realistic and wise enough to know how the world works, how our flesh works, how greed works, and how "a little shave here and a little shave there" becomes a whole shaved head eventually. 

"So, Tammie, no one says YOU have to enroll your daughter in a private school..."

No, you're right, I don't have to, and I don't want to. But I also know that there are a lot of parents out there who might not realize the full implications of what rights they would be abandoning at the door if their child with special needs got in on a Special Needs Voucher program to a private school.  

As I said, this sounds very attractive, but I believe it's a wolf in sheep's clothing. 

My daughter would be a cute bubbly nine year old with a white cane and a dollar sign on her head.  That "choice" sounds like a dangerous chance to take. 

Not What I've Been Waiting For...

I started saying this after the "Ninth Grade Dance"...

The anticipation of an event is often greater than the event itself.

I also started saying this:

I should have worn that to the "Ninth Grade Dance."

You see, I was a dancer...or at least, I WANTED to be dancer.  So I thought, "Rather than wear a formal dress like all the other girls, I'll pick out a funky, dancy "Paula Abdul meets MC Hammer" type of thing.  So that's what I did...
Of course, the part that I forgot was that I was a wanna-be dancer with a crush on a boy.  Guess how many boys thought a girl who wore a funky, dancy outfit rather than a pretty dress was awesome?  That's right, not many.  I'm guessing it was zero, actually. 

Now that I'm older and have many more life experiences, I think my "saying" which started at the "Ninth Grade Dance" still holds quite true.
 

The anticipation of an event is often greater than the event itself.

How many times have you built something up in your head, been so excited for it, waited for it with anticipation; like Christmas, or a gift...but once the moment has come, and after the moment is passed you think, "That was it?"
 

I've found a fairly decent solution to this dilemma.  Prior to an event; something like a class reunion, or a trip, set 3-5 goals.  Identify 3-5 things that you want to have happen in order to consider the event "all that you anticipated it could be." 

Here are some examples of possible goals for various events:

1.  Laugh so hard I cry
2.  Eat something I've never eaten before
3.  Talk to someone I had never talked to in High School
4.  Take a nap
5.  Visit a museum
6.  Help a stranger

When you have goals such as these written down for an event, then, no matter what else happens, you can check them off and say, "This was a great - trip, reunion, wedding day, surprise party...-".

Thankfully, I think it only took me a year or so to stop looking a dresses and saying, "I should have worn that to the "Ninth Grade Dance."  

Thankfully, we have so many experiences in life that the ones from high school only pale in comparison.  

But, life can hand you many moments where you think, "This is NOT what I've been waiting for."  It's good to be prepared with a little perspective, and a little bit of reality ahead of time.

Questions to Ponder:
Have you ever had an experience where your anticipation of the event was greater than the event itself?
Has such an experience ever made you a little more cynical, and a little less likely to get "excited" about an upcoming event?
Have you tried the idea of "goal-setting" for trips and other events?  Do you think you will in the future?

(Written in response to Sunday Scribblings 2 writing prompt "Waiting for a Gift")

Yes! Sign Me Up!

Would you subscribe to your faith even if you knew you would suffer in the midst of it? 

 

Many people falsely believe that Christianity will bring happiness.  But, even when we are blessed and in the presence of God, we can still feel darkness; we can still experience depression.  In Genesis, Abraham, the father of our faith, even faced darkness:

Now when the sun was going down, a deep sleep fell upon Abram; and behold, horror and great darkness fell upon him. Genesis 15:12

God was telling Abraham about the future nation that Abraham would be the father of; but that nation did not have a “sunshiny” future.  There would be pain, oppression, persecution, and uncertainty.  Had Abraham signed up for that? 

Today we subscribe to many things that bring us pleasure; weekly or monthly magazines, news feeds on the internet, even the jelly of the month club.  A subscription means we are signing up to receive something over and over, usually because we want it.   A subscription is an official way of saying, “I want what you are offering to me.”

So, will you subscribe to your faith even knowing that it won’t promise you an easy life; rather a life worthy of eternity in Heaven with God?  Will you sign up to receive the blessings that God has to offer you even if you know that you will also suffer pain, persecution, oppression, and uncertainty?  

This morning, and every morning, I need to pull out that little renewal card and say, “Yes, I want another day of ‘Life in Christ’!”  I will “refer a friend” for her trial subscription by inviting her to a great Christian music concert, or to Sunday morning at my church. Lastly, I’ll mark the little check box that says, “Yes, I would like ‘Life in Christ’ to send me e-mail updates about special offers and unique opportunities to experience personal growth and abundant blessings.”

It’s Friday morning…and it’s time to decide; will you subscribe today?

(In response to Sunday Scribblings writing prompt: Subscribe)