Friday, April 19, 2013

Turning a new leaf

What a ride we have been on!  To even summarize what this past 4 years has been like is impossible to put into words.  4 years.  Looking back to Carter's birth, I can't believe it's only been 4 feels like so much longer than that.  I can't believe we got through what we did and survived it.  Not only did we survive, but we grew.  The old phrase that "what doesn't kill you, only makes you stronger" never felt so real until I arrived at this day.  If someone were to tell me one year ago today that so many things would change, I wouldn't have believed them.  If they told me that Carter would be scooting, pulling to his knees, eating food and thriving, I would have looked at them with tired eyes and hesitation.  We waited FOUR years to see Carter respond to his name.  We waited FOUR years to feel the warmth of his hugs and the squeeze of his hand as he grabs ours.  4 years.

With big changes comes new trials and tribulations.  Progress doesn't always mean perfection or cures.  It means that he is growing and developing, which are things I was unsure would ever happen.  So as I look at his future now, I have hope stronger than I ever did before.  I also proceed with caution as each day can change in an instant.  I prepare myself for more changes instead of fighting them.  I am more aggressive with each new symptom.  With change, there always comes troubles.  Life can never be perfect, that I will never expect.  With scooting also comes mischief and boo boo's.  Carter's new thing is banging his head.  Not just banging it softly, but aggressively and violently.  He will scoot to the hardest wall, furniture, or floor he can find.  We run to him each time he begins the banging and reroute or redirect him.  This only lasts a few minutes before he moved on to a new place to bang.  We hoped it would just be a quick phase and he would stop.  But 4 months later, he is only getting more creative.  We seen his physical medicine and rehabilitation doctor yesterday and we discussed this issue.  She prescribed a helmet for these difficult days.  Another piece of equipment.  Another change to our lives.  One more abnormal tidbit to our already atypical life.  But I am okay with this.  Would I have been okay with this a year  But I don't get to choose how life works out, nor can I reason with my son.  So instead of hoping things will change because I will them to; I will accept it and do what needs to be done.  Because of this new behavioral change, we need to order a new wheelchair as well.  The one he has now was ordered when he was 2 with no idea what his needs would be when he really needed the wheelchair.  It is in no way safe for him when he rocks or bangs his head.  It also doesn't recline at all to allow more support when he is sick and unable to support his head as well.

I approach this new chapter and turning of a leaf in stride and my head held high.  Not because I am at terms with all of these things, but because I know we will be okay.  I know that Carter will continue to grow and change.  I will always hope for bigger things.  I will never give up or become complacent.  No matter how hard the choices are or become, I will do what I have to for him.  I will hide my tears when the times are tough.  I will be selfless when I feel like being the most selfish.  I will hug him tight when he pushes me away.  I will relish in the smiles and giggles to hold me over for the days when they are lost.  I will take pictures of all the moments, even if they are painful to look at later.  Because no matter what battles we walk into, I am always his mommy and all of those moments are what his precious life is all about.  I am his support and comfort when nothing else works.  There is nothing else to do but be strong.  I believe in the power of positive thinking.  I choose to surround myself with supportive, positive people and have learned to lean on them for support.  I am no stronger than the next person, but I have learned to love and grow with the life I have been given.  We will learn to love his new helmet and wheelchair because they will be important to Carter's quality of life.  He will rock them like the superstar he is!