Unanswered Prayers

Rejected...

My GRE scores were abysmal, and the University of Minnesota didn't want me to come anywhere near their graduate program.
Should I retake the test?  Fork out more money even though I had a history of choking when it came to standardized tests?

UW Milwaukee had accepted me.  Not only accepted me, but also offered me a teaching assistant-ship which meant free tuition to school!  Why couldn't that have happened with U of M?  I didn't want to move as far away from home as Milwaukee was. 

I had prayed for it all to work out for the best.  Was this really best?

Unanswered prayers...

Had I not moved to Milwaukee I: 
Would not have reconnected with Jeff, fallen in love, and married him.
Would not have lived in the Madison area, let alone the Milwaukee area, where I've met some of my nearest and dearest friends.
Would never have had the perfect DNA make up to knit together Evie Jo.
Would never have heard of WAGR Syndrome, and would not have my amazing WAGR family.

My greatest tests of faith have come from unanswered prayers.

My most amazing blessings have come from unanswered prayers.

My life would not be what it is today without unanswered prayers.

Write Your Story On My Heart My Life
I know it's never really been mine
So do with it whatever You like
I don't know what Your plan is
But I know it's good, yeah...Author of my hope
Maker of the stars
Let me be Your work of art
Won't You write Your story on my heart.

Publishing: © 2014 Word Music, LLC (ASCAP), Francesca Music (ASCAP) (All rights obo itself and Francesca Music adm. by Word Music, LLC) / Universal Music – Brentwood Benson Songs (ASCAP), D Soul Music (ASCAP) (All rights obo D Soul Music Adm. by Universal Music – Brentwood Benson) / 9T One Songs (ASCAP), Ariose Music (ASCAP) (Adm. at CapitolCMGPublishing.com)
Writer(s): Francesca Battistelli / David Arthur Garcia / Ben Glover

What are YOUR unanswered prayers???

 

Evie Can Run~A Reflection on Abilities rather than Disabilities

Have you ever seen a part of your life from an entirely different perspective than you are used to seeing it?  How did it make you feel?  Relieved?  Guilty?  Lucky?

Evie and her therapeutic horseback riding partner; I’ll call her Sarah, have been in the same “lesson” time-slot for about 2 years now.  That means we’ve gotten pretty familiar with Sarah, and she and Evie have a good working relationship together.  Sarah has cerebral palsy; for the most part, in the context in which we spend time with her, we only see the condition affect her walking and gait.  

Earlier in this past fall season at one of the therapy sessions, I was telling Sarah’s father about an incident, and in my narration I said something to the respect of, “Evie was running…”.  Sarah looked at me and said, “Evie can run?”  In her voice, on her face, I recognized an unmistakable sense of shock that could only mean one thing, “All this time I thought we were the equals, but she can run, and I can’t.”

I responded the best way I knew how by saying, “She can, but that doesn’t mean she should.”

Sarah looked at her father and said, “Dad..?” and ran out of the barn, her voice trailing off with no words left to say.

Sarah envied Evie.

In a world where I have to focus on her deficits; what she CAN’T do, in order to gain access to services and therapies for Evie, I had never imagined another child wishing she could do something that Evie could.  While she can’t see, can’t be understood by strangers 70% of the time when she speaks, can’t tie her shoes, can’t dress herself without some assistance, and can’t complete three unrelated activities after being directed to (these are the types of questions we have to answer in order to determine her eligibility for services)…Evie CAN run.

So, in spite of the fact that I cringe when I see Evie running, and I typically need to reach for the bottle of antacid tablets and say a quick prayer for her safety if she breaks her normal speed of 2.6 mph; Evie can do something that another child can’t.  I may have “known” that in my head, but I hadn’t considered it from another child’s unique perspective; from a child who can’t run.  

Every once in a while, I think we all need to look at our own deficits or burdens through the lens of someone who wishes she could do what we can do.  A mom who can stay home with her kids during the day might wish she could have a reason to get out and talk to other adults at a job; while a mom who gets run ragged during the day at her job, might wish she could stay home and enjoy a day with her kids without worrying about meeting deadlines or managing disgruntled employees and clients.  A person who lives in a small house with tight quarters might wish to have a larger home to spread out in, while the person who lives in the larger home is wishing to have a smaller place with less space to have to clean and maintain. 

Could it be that there is always a different way of looking at our circumstances? 

Would this world be a better place if we each would take a moment and consider what we have that others may only wish they had?

What is one blessing in your life that you know you often take for granted? 

When I Just Want to be Normal

WEGO Health's National Health Blog Post Month has gotten me thinking about and writing about things that I haven't give much time to in the past.  Today our assignment is to write about how, when, and what we reveal about the chronic illness that we, or our loved one, suffers from.

Fortunately, I was in a wonderful job as a dental office manager when I gave birth to Evie.  I'm so thankful that the leaders of the dental group knew me, knew my work ethic, and knew my heart; otherwise I don't think it would have been quite as easy to "believe" that I needed as much time off after returning from maternity leave as I did.  Evie's first year of life was filled with eye exams under anesthesia, ultra-sounds, and eye surgeries.  We were blessed with an amazing daycare provider who would allow me to bring Evie back after she had received her post-surgical check-ups; and she would fearlessly deliver the 12 + eye drops required for Evie's full recovery. 

Also, I was blessed to work with doctors who put family first.  There was a day that I had a complete mental breakdown and had to call in to work and say, "I just can't stop crying!  I don't know what to do."  I was told to stay home, rest, and allow myself some time while Evie was at daycare and I could just take care of myself.  The next day I went in to work and one of the doctors, Brad, pulled me into a meeting room and we talked about what had happened the day before.  I told him I started panicking about what our future would be.  Would Evie have autism, would she have cancer, would she have behavior issues; what was our life going to look like and how horrible of a mother was I to look at other children and to think, "Would Evie be able to do THAT if she didn't have WAGR?"

Brad then explained to me that what I was experiencing was normal.  I could actually benefit from treating myself as a person "recovering" from a traumatic experience.  He told me that I needed to recognize something; no matter how much I worried about it, I couldn't control what would happen tomorrow, let alone 5 or 10 years down the road.  Brad recommended I get the daily affirmations from Hazelden so I could remember to stay focused on "today."  The co-workers I had, that God put in my life, were no coincidence.  He surrounded me with just the right people to get me through.

Family Medical Leave Act (FMLA), the law that enables a person to take a set period of time off for a health condition without jeopardizing their job, helped cover my maternity leave.  It takes a year of working for your FMLA to renew.  It was no coincidence, I believe it was a God-incidence, that my FMLA renewed on September 14th of 2005 and Evie was diagnosed with cancer on September 22nd, just days later.  I had the law to protect me, but God to orchestrate it all.  In order to maintain our financial solvency, I had to work while Evie underwent chemo.  I worked Mondays through Wednesdays, 10 hours a day to maintain our health insurance.  My mother in law took off from her job those days so we didn't need to expose Evie to all the germs at daycare.  (Another blessing, another miracle, was that our daycare provider held Evie's spot at daycare even though we couldn't pay her for those 18 weeks.  That is a TRUE sign of God's provision.  Thank you, Doni...you will never know how much you mean to our family.)

Thursday was chemo day, and I'd take Evie to the appointments, and Friday was "the day after."  They were never easy days, and often we would end up back at the clinic because she would spike a fever and need antibiotics to treat pneumonia developing in her lungs. 

Back to the topic at hand though!  I'm so glad I didn't have to "explain" all of this to a new employer.  I think it would have been overwhelming to say the least.  So, for Evie's first 6 years of life, I never worked for anyone but those initial doctors who were with me when Evie was born.  They had faith in me, faith in God and were always so supportive of our family. 

Once Evie started getting "up there" in grades at school, it became evident that she would need more help with homework, as well as more support from her "mommy" who would observe things and try to make them right for her (like if the homework was too overwhelming).  I never really had time to take her to all the appointments she SHOULD have had either while I was working full time!  So, we ended up only do the "MUST-HAVES" like oncology, ophthalmology, and nephrology.  I left my job at the dental office and started to stay home with Evie a few summers ago.  This took some hardcore budgeting, but it was well worth it.  I started to go through all of the "recommendations" for Evie's health.  We were supposed to get her orthotics to help her walk, speech to help with her speech apraxia, and neuro-psych to help with her anxiety.  All of this was too much to handle with my full time job.  I signed on to be a substitute teacher and paraprofessional in our local school district and that became a dream come true. 

The people in the school district knew me and knew Evie.  Again, I didn't have to explain a thing!  AND, what's more, I didn't have to ask for time off as a sub, which always felt mentally draining as a manager.  To me, asking for time off was like saying, "I can't handle my job and these appointments too.  I can't fulfill both roles in my life."  For many years, Jeff took Evie to many of her appointments because at his job there was comp-time he could build up and use.  But I felt out of the loop and like an inadequate mother when I would miss all that time with Evie and her doctors. 

Who wouldn't love more time with this girl?

I'm now a permanent part-timer at the high school in town.  Evie and I are able to walk home from school together (which has diminished her behavioral issues after school that she used to have.)  The time that I have now with Evie has shown me that I CAN be a good mother to her.  I think I struggled for years feeling that I really had no relationship with her~I would be at work before she would even wake up, and would get home in time to feed her and bathe her and get her into bed.  That was no way for me, or for my family to live.  I'm glad I toughed it out at my full time job as long as I did, because I will never take this time I have with her now for granted.  I made a deal with God that if I got lazy and started to just take naps in the morning, or not use the free time for volunteering and giving back, that he could send me back to a full time job like I used to have.   Let me tell just say, I am a staying busy, but it's what works for me and for my family now. 

So, I guess it's clear to see that I haven't really felt the need to explain much to my employers.  I often feel I talk about Evie and WAGR (www.wagr.org)too much, because I think it often connects me to others.  I may meet someone who is blind, or has cancer, or is the parent of a child with sensory issues...I start talking about Evie, because it's common ground, it's a way to feel a sense of community, togetherness, unity.  I have mission to reach out to the hurting and connect with them, so how can I hold back when I know that Evie has taught us so much, and we have so much to offer others.  Educating others on rare diseases is a way to create a more universal understanding of "pain" and "recovery" from it.  Hopefully others can see it that way too, and not feel the need to hide their conditions. 

A Letter From My Grandma Ev

I found a true gem the other day.  A card from my Grandma Ev, dated from 1991.  Based on her response, my guess is that my letter to her was about school, and perhaps some of the "picking on" that I received as a little goody-goody and bookworm.  I love this letter.  It reminds me of how I made it through and where I got faith...and, knowing that she was praying for us every day still makes me feel better today.  Is it any wonder I named my daughter after her?  I typed this out as Grandma wrote~grammar and spelling and all...

My little Sweet heart Tammy, or is it Tammie?  You are Grandma's little Sweet Heart, you know.  And I thank you for thinking of me! 
And you know what I do when I don't fall asleep right away?  I start thanking God for all His goodness to me~like Protection, and I always can find so many times He has been there to guide me and soon I'm asleep!  Always remember to Thank Him, cause without Him we'd have nothing and He likes our love too.
And when we feel the bottom is falling out, and you've no place or person to go to, God will always make a way, and guide you thru it!  And you know what?  Your friends don't know or rely on Jesus or they wouldn't complain all the time, rather count their blessings...If we obey His laws we are happier too! 
Pray for her and Grandma will too.  I pray a prayer cover of salvation and protection over all of you every day!  Ask God to fight your battles, and He will! 
Boy and only one month to go and school will be out and will you have time then to lay in the sun and relax.  And by that time Gram should be thru raking and etc. and you can always visit me!  Right?
Congrats on your rating in Spanish and thank you for the poem.  I have it sitting here and now thanks so much for thinking of me.  I love you all so very, very much and so does Jesus.  Grandma Ev

Thankful For...

We are doing this on our WAGR/11p Deletion listserve and thought I'd share my list of thankful things with you...

I have so much to be thankful for:

I'm thankful that even my mistakes can become blessings

I'm thankful that the Badger Hockey team swept North Dakota and won a game against #1 Gophers

I'm thankful that I have an incredibly wonderful and supportive family and group of friends

I'm thankful for WAGR/11p Deletion Syndrome and all that it has taught me

I'm thankful for incredible doctors, therapists, teachers and staff that work the MH schools

I'm thankful for Facebook, E-mail, and Twitter for making the world a smaller place so the few families of WAGR don't have to feel so alone

I'm thankful for Thin Mints, ice-cream, and pizza

I'm thankful for shirts that have tags on them because Evie always plays with the tags...especially thankful for the ones on the side of shirts and not the back of the neck

I'm thankful for the advancement of medicine and science so we can live longer, healthier lives and make EVEN MORE mistakes to learn from :)

I'm thankful that gas prices are lower (ha, ha, just kidding; wanted to see if you were still paying attention.)


I'm sure I'm forgetting something here...but hoping that I've covered it all :)