Wednesday, June 12, 2013

alotta God and alotta changes! Life can be good even with AS!!

Over the past month or two, so many changes have happened in my life or I've gotten news of what's going to happen the remainder of the summer with my girls.  I've celebrated 2 graduations, one from college and one from high school!

I'm going to start with the high school daughter.  I know, we usually start with the oldest, but this time--it's the youngest, I'd like to chat about.  This "chat" may offend some, and well, let's be honest here, if you've been following my blog, you know I speak/type with exactly how I feel, no sugar coating!  I'm so proud of my sweet Lou!  Graduated with honors!  Headed to college and knows exactly what she wants to do!  All of this while being bullied often, and also struggling educationally at a young age.  As parents we were first advised of her "struggling" in 1st grade.  We helped her along and in 4th grade she had a wonderful teacher, Cathy Falzone, who knew exactly what Lou needed!  She just needed one more explanation and she got it.  Then came 5th grade--a long term sub at the beginning of the year and bullying and health problems kick in.  She had lost hearing in her right ear--total hearing loss.  We're not sure when this had happened, but it was gone.  Ok, we can handle this.  Then we find out she needed glasses--well, we can fix this!   We had been giving suggestions of holding her back, medication, etc.  Those of you that keep up with my posting also know that my faith in God is strong and secure, so with prayer we (my husband and I) knew what the answer was.  She needed to be pulled from public school and put in private.  It is such a "God thing" the way we were given the answer!  Way to long for this long post, but it was clearly put in our hands. 

Pause in that story just to say, we hear from God all the time.  He does answer our prayers.  It can be wait, yes, or no.  Fairly simple, just as we answer our children.  And just as our children, we sometimes don't like the answer.  Sometimes, we pray for an answer and then we close our minds to the answer because, we "think" we know it--in other words,  we don't even really listen and never truly intended too.  I think sometimes, we even hear God's answer and it wasn't what WE wanted to hear so we just do our own way.  Some of you may say, but what about your (my) health.  Haven't I prayed to God to heal me.  Yes, I have.  Then you may say, "why hasn't he"?  Or you may say, "why did God let this happen"?  My thoughts on this are very clear--I have prayed for healing and do so continually.  I do NOT think God gave me this disease or "allowed" me to get it.  I think our bodies are earthly and can get earthly diseases.  And God can heal me, it just may not be now, or even on earth.  I'm ok with all of this.  Now, back to the original post..

Crossroads Christian School is the answer that God placed in our hands.  Now, do we take His answer or not...with leaps of joy!  Even Laney knew God was placing her there!  She was caught up by a wonderful teacher, Mrs. Baker, and then Laney started soaring!  There were no "drugs" and no holding her back.  Finally, an atmosphere that she could learn in.  The school only went to 8th grade and we'd have to again, make a decision, but for now, this was the best place for her.  I question those that have children that are in my shoes and know the answer is clear, but don't take it.  I think, "why?"  I could type/say so much more here! But, I have to first say, have you tried everything before those drugs???  I would say, no.  That's probably gonna get a negative response, maybe make some of you mad and defensive, but it's how I truly feel.  Laney graduated CCS and entered public high school AHEAD of her classmates.  I have to back up, while she was away from the public school the rumors/BULLYING started....comments that she failed 5th grade and among other things.  I can say that middle schoolers are just...well, mean!  Then when heading back to public school, there was a bump, but she handled this perfectly fine!  It really was just folks being mean.  This even happens when you've been there all along.  She got involved, and did great!  Graduated with honors!!!

So, this post, yes, about my youngest.  There's a bit more to her story that I'll share.  When she had that "deaf ear" in 5th grade, on the top of her Christmas list was to get her hearing back.  She prayed for this and guess what folks...it happened!  SHE CAN HEAR IN THAT EAR!  She had other health issues come about in 6th grade.  The fainting spells began.  We learned she has a low-immune system.  We learned her blood pressure was extremely low.  Then came the "random" back ache, wrist pain.  We learned she carries the marker for A.S (my most horrible day--and feeling as a failure as a parent--why did I give this to her).  So, those with A.S are wondering how she is now at 18?  She's doing great!  Yes, still having those pains.  The back is more now.  Yes, this does scare both of us, but let me tell you what she said recently; "mom, we need to stay on top of this.  We need to catch it early."  Don't you worry, WE WILL!  My prayers are that God will protect her and provide the husband that HE has lined up for her.  I've been praying this since the day she was born!!! 

Oh, there are great things in store for sure!  In August, I'll move her 4 hours away to college, and one week before that, I'll move the oldest 6 hours away.  Wait...what...I'm excited to post about both of my WONDERFUL daughters...so this story continues...oldest daughter will be featured next!  But, for now...the changes are hard, but wonderful.  Exciting but sad. 

I will end with this, while I have this terrible disease called ankylosing spondylitis with no cure and daily pain and really not sure what the feature holds with A.S....none of us truly knows what our future holds.  I am certain of one thing, I know who holds it! 

A.S has my body, but NOT me!


                                                     My honor college grad in 3 years!!!

                                                     My honor high school grad!!!


                                              You just graduated, so what's next....DISNEY!
 
 
 
Back row from left to right, ?, ?, Aria (fav ride), Tyler (so crazy eating marshmallows), Laney (scared to death and hates it), Me (holding on tightly as to not hurt my back and neck, but I was determined to ride), and Lang (my soul-mate)!

5 comments:

  1. Melanie, Your writing has really been a blessing and encouragement to me, and I'm sure to many others! Thanks for sharing your story and your faith. I've made a copy of Laney's graduation picture and have it on my dresser - she's always in my heart and her picture reminds me to keep her (and you) in my prayers. You'll never know how blessed I have been to know her, see her grow for four years and then to see, through your writing, how successful her high school years have been. Tears are flowing as I write this - love you all! Susan

    ReplyDelete
    Replies
    1. Thank you sooo much Susan! We LOVE you!!!!

      Delete
  2. I just found your blog and i wasn't very aware of others with a.s. i was diagnosed six years ago and it was never spoken of again. i saw a primary care provider who wanted nothing more than to get rid of me and send me to another doctor. A pain management doctor who would take me asca patient was harder than it sounds. i was 23 when i was diagnosed. i knew something was wrong but i thought i was just working to hard. now that i know i remember in high school how hard my back and shoulders felt. the weight was excruciating. it got to the point where i found myself constantly holding my breath because it hurt to inhale and exhale one right after the other. i have to wait to exhale when i breath. worst of all doctors only focus on my herniated disc, ruptured disc,and torn disc, sending me from rheumatologist to neurologist/pain doc to another rheumatologist then back to my primary care provider again, who couldn't stand me. i was never prescribed any of the medications normally given to people suffering from a.s. they just wanted me gone. I'm almost 30 now and the last doctor i had, another primary just discharged me without the care of another doctor. I'm so afraid of running out of the one bottle of medication i have and starting to walk bent over and facing the floor. every doctor has no clue what a.s is and they just think I'm there seeking drugs. i describe it being difficult to take steps feeling like I'm being dragged down into quick sand while carrying someone on my shoulders. They all look at me like I'm crazy and tell me i need to see this type of specialist. I'm scared because i lost my insurance and my job last year and no doctor will take me without insurance and i can't pay my bill to see any doctor. I'm living in my car and honestly i feel like i want to die. i lost my home last year and i have no one to help me. the pain, discomfort, fatigue, and sleeplessness has caused me to not care anymore. i just wanted one doctor to listen and help me. not judge me because of my age, think I'm there just for drugs and shuffle me out like cattle. what should i do?

    ReplyDelete
    Replies
    1. You need to go to another doctor/rheumy. It took my 3 before I got to the one I'm at now. I'd also say to get involved in a church. Church families are the best place to be when problems arise. Read your Bible daily and pray. Hoping things turn around for you!

      Delete