Tuesday, November 3, 2015

To the parents of an older child with special needs,

I have barely even begun this journey and I am exhausted.  Many days I wish to throw in the towel and give up; instead, I give myself a proverbial smack, wipe away the tears, suck it up, and just keep on going.  More often than not I follow my schedule as if I am an empty shell, simply going through the motions, but not really present.  There have been a couple days where I do not know how I functioned at all.  I feel so guilty because I am sure my other children can tell.  I have conversations in my head about what they will say about me when they are older; that I was always preoccupied or appearing sad or frustrated all of the time.  It is often during these more challenging days and times when I think of you most.

I think of how many times over the years you have had to pick yourself off the floor on days when it just plain sucked.  I think of all the times you must have wanted to say, "I've had enough".  I think of all the challenges you might of endured, and I am sure there are some that I don't even know exist.  It all makes me wonder, how have you done it?  How do you do it?  How do you keep doing it?

People have told me I am strong, that they do not know how I do it, and that I am an inspiration.  You know better than I do, that I am only doing what I have to, what is essentially required of me as a parent, what any parent who was put into my situation would do.  Maybe you can relate when I say being told I am "strong” or that I make someone "proud" is not always enough.  Sure, those sentiments make me smile, and give me a little boost of reassurance, but then looking at my daughter, being "strong" and "inspirational" has done nothing to help her situation.  

I know this journey is going to be an uphill battle and there will be depressing and challenging days.  I also know the journey will be filled with plenty of celebrations that will counter balance the negatives, and of course, in the "end", "it will all be worth it".  No one knows more than you that this road with all the bumps, forks, and unpaved paths just plain stinks!  Tell me, how do I maneuver through it all?  I know like parenthood and life in general, we all experience things differently, and I am sure I will learn along the way, but what advice can you give a rookie that will be referenced for many years to come?

What I am asking you, dear moms and dads who have traveled this road for much longer than I have, what gets you out of the slumps?  What makes you stay sane?  How do you balance your fears alongside reality?  Is there anything that will help heal the feeling in the pit of my stomach or the ache in my heart?  When all you have is hope and faith and you begin to see those fade, how do you get them back?  How do I climb to the top of the mountain and get some fresh air?  If I keep my eye on the prize, what does that look like?  If I am honest with myself about what the future holds, have I given up on my daughter, have I already lost the hope?  If I keep dreaming about what the future might hold, am I just naive if I think those dreams might actually become a reality?

My motto over the past eight and half months is that we will try everything once.  It does not matter if the idea appears ridiculous, or holds no water.  If someone tells me dancing in rain puddles will get my daughter to laugh, you bet I will be placing her outside in the storm.  I will continue to dream and I will continue to take chances, but how do I protect my heart from the extreme pain that follows when those "miracle treatments" just do not work for us?  How do I balance the fact that I feel like a failure, when I know deep down it really will not make much of a difference if I sit that one "potentially life altering experience" out?

If you, my dear veterans, could give some advice for how to best survive this journey with my child with special needs, what would it be?

Sincerely,

A rookie mom to a special baby girl who has special needs




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