The Struggle and the The Victory

I have been around the special needs world my entire life.  As a very young child, I remember learning what it meant to have Spina Bifida, and I remember a friend’s dad doing sign language for our church services.  Whether adults or children it has been a part of my life from day one.  I don’t know if the Lord was preparing me so I wouldn’t be surprised or caught off guard by what He had for us to face; I really don’t know.  My connection has ranged from distant acquaintances, to dear friends, to volunteering, and teaching.  My exposure has extended far beyond the realm of what most people know.  I have seen everything from Autism, Downs, Trisomy, Cerebral Palsy, hearts that failed to function leaving the brain deprived of oxygen, friends missing limbs, traumatic brain injuries, etc.  I know most would not consider everything in that list a true “special need.” If you get down to it, at its core, whether it is a physical or a mental disability (or some combination of both), there are going to be specific specialized needs that are required for that individual.  I thought I was prepared.  I thought that I had had an up close and personal encounter and ignorantly that nothing could shock me. 

 

I have struggled to say that Brylee is special needs. In the grand scheme of things, her disabilities are so insignificant compared to what they could be.  She is so incredibly smart, sweet, she loves to engage, has amazing comprehension, and has more “want to” than anyone I know.  I know all this and, as a mom, all of this is a daily blessing to me, but it does not change that she still struggles daily.  I would dare to say that she fights to accomplish every task (however simple it “should be”).  In my efforts to keep from comparing her to other children on either end of the scale, at times I think I have dumbed down what is really going on.  On one side of the fence, I hear people say things like, “Oh my goodness I don’t know how you do it.”  On the other side, we have the conversations about how bad it “could be”.  I do not ever want to dumb down someone else’s struggle, because the reality is that there is always a situation that is harder, more challenging, has greater risks, a slower climb, a more distant goal, more seemingly unachievable results, a closer end, and a further beginning.  However none of that changes what is accomplished during the fight.  I think lately I have missed that.  I have vehemently tried to not complain about how hard it is that I have discounted the struggle that precedes the accomplishment- the faith that is required to make it to the other side of each fight.

 

You know, it never occurred to me that there was something more difficult to dress than a squirming baby.  That is, until I started putting long sleeves on Brylee for the first time.  I realized that she can not extend and stretch her arm out to push it through.  That was a sobering day for me.  I found myself thinking about all the people I have know over the years with CP (cerebral Palsy) and what getting dressed was like for them, what it was like for their parents.  The first few weeks of doing this, Brylee would cry every time.  It hurt.  It didn’t feel good.  She was frustrated!!  Yet now she knows its coming and my sweet, little, one-and-a-half year old will sit there most of the time with a smile on her face and patiently wait for me to slip it on her little arm, past her hand, and smooth out all the wrinkles.  That is a victory ya’ll!!!!  I was not prepared at all for what it looked like when she was able to move where she wanted to go for the first time.  She has fought for a year and a half to be able to be on her stomach without her joints hurting her; somehow she has managed to work past the pain (week in and week out, therapy session after therapy session) to be able to crawl for the first time.  The thing is, it is so hard for me to be willing to say, “Yes, this has been a gut wrenching, tear jerking struggle at times.” However, if I don’t acknowledge that, then I will dumb down the victory that the Lord has given that sweet little girl and our family. 

 

We still have many challenges ahead and a lot of battles left to fight (beyond just the normal-life ones).  Unfortunately we have had to put her back on the feeding tube for the majority of her feedings, but just recently she has actually been able to take about 2 ounces of food on her own some days (this is pretty awesome for Brylee).  That is a huge victory amidst a tremendous battle for her.  We have put her on a new medication to increase the mobility in her joints.  Hopefully, this will help her learn how to walk.  We did not want to put her on the new meds, but since she started them, she is actually opening and trying to use her left hand more than she ever has.  Victory!

 

I know as humans we are not supposed to compare, because God perfectly orchestrated and designed each of our situations and us.  The truth is that I do not know of one person (that in some way or some fashion) that has not done this.  I think what I have grown to understand is that other people’s situations, challenges, and victories are great to help us keep perspective on our own lives.  That does not mean that we should use them to discount our struggles.  That also does not mean we allow ourselves to be victimized by our situations, but instead we can simply acknowledge and admit our struggles knowing that the Lord works all things together for the good of those who love Him, like it says in Romans 8:28.  We then recognize that victory only comes through struggles.  So as I sit here tonight I am trying to find freedom in admitting to you all that things are still a painstaking struggle some days, but that our families’ victories have been made so much sweeter through the challenges that we have been faced with.  After all we know that the refinement process is never simple or easy, but that the grace the Lord gives in sufficient for us.  His mighty power is made perfect in our weakest moments.