Tuesday, February 24, 2015

The Waiting ~ WAGR Wednesday

Handsraised for #rdd2015 #rarediseaseday on Lake Tahoe

There is a lot of "waiting" that comes along with having a rare disease.  First, my husband and I waited at the hospital for the doctors to figure out where to refer us when my daughter was three days old.  They drew blood and sent it off to Texas for a special FISH analysis and we waited for weeks for the confirmation that she had WAGR Syndrome.

We waited in the ERs and Urgent Cares for doctors to come in and ask the same ridiculous questions which had nothing to do with our visit. 
  • Was she full term?
  • Any complications during pregnancy?
  • Was it a  normal delivery?
This was not necessary questioning when we knew it was pneumonia or a UTI, but, as the "3 Ring Circus" that drew observers from all over the hospital, apparently we needed to be patient and wait for them to satisfy their curiosity.

We waited while our daughter would be under sedation for eye exams and ultra sounds; we waited through eye surgeries, chemotherapy appointments, surgeries, and recoveries.  We wait for blood tests to figure out how her hormone levels are, and how her kidneys are functioning.

Waiting for medicaid approval and acceptance into the county programs was and is hard, because financial concerns heaped on emotional duress only multiplies exponentially one's fear of the future. 

Life with a rare disease can be lonely as we wait.  Waiting for the next diagnosis, the next medication, the next referral to a the next specialist.  We wait for researchers to show interest, for pharma to release the "affordable" generic, for the FDA to "approve" it for children.
We wait, and wait, and wait some more.
On Saturday, February 28, 2015, if you would, please take a photo of you with your hands raised as a sign of solidarity with those living with one of the 7,000 rare diseases~let us know that we don't wait alone.  Post your photo to Facebook, Twitter or even on the official Rare Disease Day website with the hashtag #rdd2015 and #rarediseaseday to join hands around the world and make our rarest voices heard.

Wednesday, February 18, 2015

New Angels, New Feelings ~ WAGR Wednesday

As a Mom:  I mourn for my friends who lost their babies on Valentine’s Day.  Two moms with two children no longer on earth but risen to Heaven far too soon.  Fear reverberates in my heart; please, God, never mine, never mine.  And then I feel selfish, and try to focus on their loss rather than my fear.

As a WAGR Mom:  This is the worst.  This is my fear.  The cancer comes back and eats away more and more of the kidneys.  It was looking okay and then it went terribly wrong.  The lifespan is unknown.  The research isn’t there to convince our doctors to scan more frequently even though they are older and “out of danger.”  Is this just one instance?  Is this “odd”?  Yes, Doctor, it is.  But:  Isn’t WAGR odd?  Isn’t my kid one of the “only” cases of WAGR that you have seen?  

As a Friend:  I’m sorry Amy.  I’m sorry I didn’t get to see you before it was too late.  I’m so glad I got to spend time with you at Cedar Point last summer, and I’m glad we talked about your cancer camp, and Law and Order: Special Victims Unit.  I’m so glad you liked your pillowcase.  I’m so glad to know that you’re out of pain.  I’m glad you didn’t have to lose your hair again…you had such beautiful hair.   WAGR Weekend will never be the same without you.
To "S", I'm sorry you had to go through this and you lost your baby girl.  I wish I could be stronger for you and not cry when we talk.  But, that's me, the crier.
And to my friends “T,””H” and “Ms. A” I’ll cherish the fact that we had your Lil’ “A” in MN at WAGR Weekend.  I can’t imagine what you’re going through; but I’ve seen your strength, and I know you’re a WAGR family, so I know you will persevere and thrive.  

As a Leader:  I wish I had answers for all of you.  This was a shock for me too.  This was a shock for all of us.  But I am overwhelmed by the strength and love you are all showing our WAGR Family.  I’m so blessed to be a part of this group.   

What gives us the strength that people see in the Heftys?  Our faith in God and our families:  our family by birth and our family by WAGR.   

I have to laugh when people say, “You’re the president.”  I don’t feel like a president.  I feel like someone who is on-line A LOT, and studied public speaking and argumentation; so, I guess I have that going for me.  I feel like someone who was inspired by her grandparents and parents who took leadership roles in advocating for people with disabilities; so I followed a similar path.  But president?  I feel just as “fish out of water” as all of you do today.

As a Griever:  I can’t lay in grief for long.  On the day my dad died, I took my girl to the waterpark.  Why?  Because I know that if I mourn for TOO long, I can’t pull out of it.  I’m sorry if I look calloused.  I’m sorry if I look “back to business as usual.”  But I know my own weaknesses, and depression is one.

As a Christian:  From the moment we are born, we are dying.  This world is dying.  This world is getting worse by the day until the ultimate end which will be terror beyond our wildest imagination.  We will see sorrow, we will feel pain, we will think “What kind of a God???”  But the same God who wrote these stories of untimely death, also brought his own son an untimely death which is why I CAN move on each day…knowing that my sins are covered, knowing that I will live for eternity, knowing that death is not the end, but a beautiful beginning.  

This WAGR Wednesday was more for me than anyone else.  For me to process the various emotions that I’m feeling.  For me to stop worrying about what others think of my response.  For me to encourage others to do the same.  

Write what you are feeling.   

  • What are the feelings that you aren’t ashamed of?   
  • What are the feelings that you ARE ashamed of?   
  • Why do you think you’re feeling this way?   
  • Are the feelings different based on the different roles you play in life?   
  • Is it a regret of something in the past; you can’t change it, so will worrying about it help?  No.  
  •  Is it a fear of the future; is it something you can control?  If you can’t control it, you can’t change it, so worrying won’t help, it will just rob you have joy. 

For me, when the fear becomes gripping, I start to list my blessings.  Do that now too.   

  • What went RIGHT today?   
  • What made you giggle?  
  • When have you felt safe in the past?  What MADE you feel safe?   
  • Do you have friends who rally around you?   
  • Do you have family that you can always count on?   
  • Do you have an employer that is supportive of you and your family?   

Not EVERYONE can answer “yes” to all of these questions.  These are blessings.  Fill you mind with your blessings and the fears will scatter and hide.  

This IS when it hurts like thunder…but the clouds WILL part and the sun WILL shine again.

Sunday, February 15, 2015

What Did I Do to Deserve This? ~ Guest Blogging Day

Photo "Tomb" courtesy of  Tiverylucky/freedigitalphotos.net

 Near the cross of Jesus stood his mother... John 19:25 NIV

It's amazing to study the life of Jesus and to see how he fulfills the Law and becomes our High Priest who has walked the earth and knows what we go through while living here.  But, lately, I've had to come to terms with another piece that God, in all His wisdom, included in the Gospel.
The fact that Jesus's mother watched him die.
Being parents of children with special needs, many times, we have to face the fact that we could out live our children.  Yes, all parents have to face this; but as parents of children born with certain genetic conditions or medical conditions; we have to live with the fact that our children are more medically fragile. 

Continue reading on Comfort in the Midst of Chaos...

Tuesday, February 10, 2015

Not Even Nakedness... Guest Blogging Day

Image "Two Affectionate Babies" Courtesy of Victor Habbick/freedigitalphotos.net

Who shall separate us from the love of Christ?  
Shall trouble or hardship or persecution or famine or nakedness or danger or sword?  
Romans 8:35 NIV

The last time MOST of us want to see a picture of ourselves naked is when we're around the age of those two babies above.  There are many of us who don't even like wearing a swimming suit in public, and who can't stand going to the doctor to be poked and prodded while wearing a thin cotton (or paper) gown.  I personally find that some of my most terrifying nightmares are the ones where SOMEHOW I wind up naked.  (Don't leave me hanging...please, tell me I'm not alone.)

So, one of the things I fear most for my daughter is her loss of modesty or dignity.  She has honestly had to be naked in front of her doctors for a decade.  We have a hard time teaching her that there are now times when it is NOT OKAY to just whip your shirt up, or walk out of the bathroom with your pants down to your ankles.  As adorable as she may be, she will be a young lady very, very soon, and her naivete about nudity terrifies me.

Our daughter rarely has slept over at a friend's house; part of that is HER anxiety, and, admittedly, part of that is MINE.  She has rarely dressed herself successfully .  She has trouble with hygiene in the bathroom.  When she has dressed herself, usually something is backwards or inside out.  How do I send her to someone else's house and hope for her to maintain her dignity?

Monday, February 9, 2015

I Would Need the Nails...

"World in Fire Image" Courtesy of Danilo Rizzuti/freedigitalphotos.net

"...fixing our eyes on Jesus, the pioneer and perfecter of faith. 
For the joy set before him he endured the cross, 
scorning its shame, and sat down at the right hand of the throne of God." 
Hebrews 12:2 NIV

I'm having one of those days...one of those stretches of days.  The days that many people believe I don't have because of how happy I usually am.  But I most certainly do have those days.  I have the days that I want to flee from my responsibilities as a mom of a child with special needs; the days when I know that I am NOT strong enough for this job and that God has made an undeniable mistake in giving me this responsibility. 
If I waiver and grow weak from a battle for supplemental insurance...If I am too tired to even want to log in to ANOTHER "my chart" account to try and track down MORE appointment notes for my daughter's medical history...If I can't think of something I want to do LESS than send another e-mail to the state...If the smell of my computer when it roars to life makes me nauseous...If I cried for 3 hours today and only stopped to take my daughter to an appointment...
If all of this is the REAL me...
Then I am not strong enough.
Polycarp, a bold and brave Christian martyr, who refused to proclaim, "Caesar is Lord" was set to be burned at the stake.  The fact that he stood firm in his faith is one thing. 
Instead he proclaimed:
"Eighty-six years I have served Christ, and He never did me any wrong. How can I blaspheme my King who saved me?" 
But wait, here's the real kicker: 
Soldiers then grabbed him to nail him to a stake, but Polycarp stopped them: "Leave me as I am. For he who grants me to endure the fire will enable me also to remain on the pyre unmoved, without the security you desire from nails." He prayed aloud, the fire was lit, and his flesh was consumed. The chronicler of this martyrdom said it was "not as burning flesh but as bread baking or as gold and silver refined in a furnace."
No nails...

He knew that God would give him the strength to stand there as his flesh burned, as the smoke sucked the air from his lungs, as the flames consumed his living body.  He requested that they leave him there to freely and willing be sacrificed for the cause of Christ. 

I don't know about you, but I think I would have needed those nails. 
I'm not strong enough.
Polycarp stood in the fire as his flesh burned; he stood there by the power of his God, by the power of his faith.  Do I have that kind of faith?  

I don't have the answers to these questions.  And the funny thing is...I actually started writing this LAST Monday!  I didn't even have the strength to finish!  But here I am, a week later, still in love with the God who loves me; the God who loves you.  I've had a week of laughter, a week of tears, a week of joy, a week of fear...Because we were born into a dying world, and we are all on a journey toward the ultimate choice; the choice to accept the love of our Creator, or the choice to turn away.  And, although God is both the "hurt and the healer," I trust Him. 

God hasn't asked me today to burn on the stake for Him...but He HAS asked me to trust Him in the midst of some pretty trying times.  

I can do this, God...with your strength, I can do this...


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