Wednesday, July 02, 2014

I'm Tired

Disclaimer:  This post is a selfish pity party.  I will complain, I will gripe, I will vent.  I simply need to let this all go so that I don't go crazy on myself.  If you don't like whining, you might want to skip this post.

I am tired.

I don't even know what else to say anymore but that.  I am simply tired.  None of the things that I have to do as a special needs mom is especially hard, but when you add them all up, and throw in the monotony of it all, it just wears a person down after a number of years.

Anything is endurable for a season.  You think to yourself, "I got this, it's only for X amount of time."  But as I look into the future, I don't see relief.  I see it getting harder.  I see Brian and me getting older, and I see Clayton's needs increasing.  And I get tired all over again.

I am tired of something as simple as jumping in the car and running to the store being an ordeal.  Yes, I get jealous of the other 90% of the population who can trust their kids to get themselves into the car, buckle up, and not have to worry about loading and unloading a chair.

I am tired of looking at everything through "wheelchair eyes."  I am tired of seeing stairs, obstacles, and going "around."  I am tired of the separation from the rest of the group that a wheelchair forces in many situations.  (And if I'm tired of it, how annoyed Clayton must be?!)

I am SICK and tired of therapy.  Our entire schedule revolves around therapy, which is imperative to Clayton's well-being.  BUT DANG.  IT. GETS. OLD.  It interrupts our school day, field trips, and a normal "homeschool" routine.  Not to mention the drama that we deal with at the clinic.  UGH.

I am tired of lifting.  My shoulder hurts.  My back hurts.  I am tired of planning my steps and the logistics of things by how many times I'm going to have to lift Clayton.

I am tired of planning the logistics of shielding Clayton's bathroom issues from other people (mainly kids).  The older he gets, the harder it is, and I flat out don't know how we'll be able to do it when he's 20.  And there's only a select number of people who I trust to help me with that issue, and I hate to even ask most of them.

I am tired of watching other couples around us plan things for themselves, since childcare is relatively simple for them.  I am tired of watching the clock if I do drop Clayton off anywhere because I know the person that does keep him can't do the above mentioned lifting and/or bathroom things for very long.

I am tired of feeling guilty for feeling tired!  The moment I start getting on one of these pity parties,  I immediately remind myself that life without these problems would mean life without Clayton.  And I can't even bear that thought!!!  I just wish I could shake this funk that I am in!   I so wish God would show me something that reminds me that He is working it out.  My mind knows He is, but my heart simply isn't feeling it right now.  

Tuesday, June 03, 2014

My Big Five Year Old

I can't even believe that it's been five years since this precious boy came into our lives.  So cliche', but SO TRUE!  He is smart beyond his years and I'm in awe each day at how the Lord created such a special and unique child.  In fact, he "designed" his birthday cake this year and described in detail to the bakery how he wanted it to look.  He was pretty stoked when he saw the final product . . . "IT'S AWESOME!!"
"Momma, do you want to know why I was smiling when everyone was singing to me?  I was saying 'thank you' to everyone for coming to my party."

Sunday, May 11, 2014

Mother's Teachers

Mother's Day is a tough one for me.  And the tears have definitely flowed this week as I've reflected on my years as a mother and the lives of my babies.  However, today the tears seemed to have dried up and I'm considering how blessed I am to have such inspirational little teachers in my life.  
Shawn taught me that I can indeed survive "the worst thing."  He also taught me that life is short, and if his two week lifespan can be a witness to God's love and mercy, then what am I going to do with my many years on this earth?  It's up to me not to waste away in grief and despair, but to push forward in the hope of Heaven.

Clayton is a daily teacher of perseverance and acceptance.  He is truly one of the happiest human beings I know.  We all look and think "how horrible, he can't walk, he can't eat, etc."  But the truth is, he has taken his lot in life and learned to live to the fullest with what the Lord has given him.  We should all become better at that.  

Jackson has taught me that it wasn't my fault.  His life is proof that I can birth a typical child and that I'm not some freak of nature that can't do it right.  And even if that isn't important to anyone else, it's been a major source of healing for me.  Moreover, my daily walk with Jackson is continually teaching me that I need to reach higher and strive for holier living, because without the help of the Holy Spirit, mothering a headstrong four year old can drain and stretch me to my limit.  

I can only hope that I become a faster learner than I've sometimes been in the past.  That little bit of stubbornness I fight in Jackson seems to have come honestly.  I pray that their teaching of me evolves into me becoming better and better at setting a Christ-like example in our home.  

Friday, May 09, 2014

Triggering Event

So I don't know if I've hidden it well or not, but this whole Tornado Event on April 27th has thrown me for an emotional loop.  Which sounds so selfish when I actually say it out loud.  Here I sit in my comfortable home, my babies and husband snoozing the night away; while the victims of the tornados have no home to be in and some will never have their loved ones in the next room again.  
The shear amount of grief overtakes me when something tragic like this happens.  It's as if the scab of my own wound is ripped off once again as I'm filled with empathy for these victims.

No, I've never had all of my material things virtually wiped off the face of the earth.

But I do know the feeling that comes with Life As You've Planned It suddenly going completely off course.

The feeling of standing at the crossroads and having to decide--will this swallow me whole or will I overcome?  
The feeling of having your heart completely emptied so that it can be filled to overflowing with God Himself.  

My heart goes out to these families who have a long journey ahead.  The long journey to a "new normal."  If there even is such a thing.  Because here I am ten years out and I'm still obviously searching for a way to navigate around the pain.

But I just don't think it can be avoided sometimes.

So I find myself hitting it head on and crying the tears.


Eventually cycling back into the routines of life as the wound begins to heal over once more.  

Wednesday, April 23, 2014

A Strange Kind of Comfort Zone

My Grandfather has been hospitalized over the last week and a half.  And tonight as I drove away from a visit, I had one of those epiphanies that has really always been there, but it only then came to the surface of my brain.

I am more comfortable in a hospital setting than I will ever be in a mall shopping for clothes, or even a grand party celebrating some societal milestone.  And to take it even one step further, a funeral home is even more comfortable to me than a Junior League reception would ever be.  [Which is probably why I've never been invited nor inquired about Junior League membership . . .] 

My baptism by fire into the world of hospitals and dying children has given me a strange perspective on the medical world and the reality of death itself.  Hospitals don't scare me in the least.  I walk in and I speak the language.  I know how to get something done if it isn't.  I know how to sit and be until the resolutions come.  It's never easy, that is for sure.  But a learned skill nonetheless . . . one that only comes with plenty of practice and repetition.  

I don't even know what weird category of person this trait puts me into, but I'm pretty positive it falls under the Unique But Awkward classification.  

And that's something I'm getting more and more used to these days.  :)

Thursday, April 17, 2014

Life is Happening

Well, life is happening and that means the blog gets neglected more and more.  It's still my venue for sharing when I finally get around to doing so, and I for sure wanted to share the video of Clayton's latest play.  This play didn't go as well, in that Clayton noticed his Granny sitting on the front row and was so nervous and emotional, that he broke out in a sob!  He then cried for my Grandmother and got fixated on her not being there.  And even though I was bummed that he didn't say his lines, he did get some laughs from the audience when he blurted out his famous "I'M HOT."  Another new famous line I didn't get on tape was his response to Ms. Lynne who was trying to console him and called him "Baby Doll."  He quickly yelled back, "DON'T CALL ME BABY DOLL!"
Major props to his helper Kylie who didn't let the meltdown phase her one bit!  

Thursday, February 20, 2014

Forward Progress

A year ago, we were at our wit's end with Clayton and his lack of PT progress.  He had not made any gains in a few years, and his attitude was less than stellar.  He was being hateful with his therapist and ending up in time out instead of completing therapy.  I spent two meetings at the clinic crying because I was so embarrassed by his behavior, but at a loss as to how to help him with his frustrations.  

In July we started giving him essential oils and in November, I started giving him Young Living's blended juice, Ningxia Red, which contains wolfberries and many essential oils.  We also renewed our prayers as we charted this new course of treatment.  He's been on an uphill climb ever since.  He just keeps doing better and better and most importantly, is MOTIVATED to participate in therapy!  That in itself improves the sessions 100%!  

He has really been working hard on transferring himself to a bench from his chair, and yesterday I was able to see him do it virtually by himself.  Reesha's hand was only there as a spot, and he was doing most of the work.  Granted, this was the fifth or sixth time he had done it, so by the time I arrived, he was pretty pooped.  But I was still impressed with just how far he's come in his attitude and his strength!  What a difference a year makes.  Can't wait to see what the Lord has in store for Clayton over the next year!  

*You should be seeing a video of Clayton in PT here . . . some people are seeing a video from a couple of years ago of my brother and I singing.  Not sure where it's coming from since it is on my SIL's YouTube channel.  ???