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Getting Through The Tough Stuff

Special needs parenting is tough stuff. There are few breaks. There are so many challenges. And yes.... there are so many rewards.

  Some days feel very tough.  There are the days when everything is not ok.  There are days when I feel sorry for myself.  There are days when the progress feels so incredibly slow.  There are days when the "I wishes" and "What ifs" seem to take over.  There are days when our "stuff" seems so tough.  Yes, I know, everyone has challenges, especially parents, and everyone has their own "stuff", but special needs parenting is definitely tough stuff.

 We have lots of challenging weeks being a family of four, that includes a very special little boy with an extremely rare chromosome duplication.  Brady's daily challenges of developmental disabilities, hypotonia, ADHD and a bevy of other "issues" can make our world turn upside down a few times a week.  This, however, has not been a particularly challenging week.  Brady has been making steady little steps forward in school, therapy and even at home.  But, for the last few weeks, despite of, or even because of, the small victories, our life with Brady has seemed so tough for my husband and I.  There is not one thing.  I wish I could pinpoint one thing.  Instead, it is many little things.  It is those darn developmental milestones that just don't seem to come, that cover my heart with sadness time and time again. 

 I know there are different things that trigger the frustration and even sadness for my husband and I.  Lately, for me, it is diapers.  Specifically, the fact that we are still using them.  Still buying them, still using them, and still needing them four and half years after my youngest and lat child was born.  Four and a half years and Brady is not even close to packing away the diapers.  It is frustrating.  It is scary.  Scary... when I let my mind wander and think about my son's future.  I know, in the big picture moments, potty training is not a milestone I should focus on.  I know there are challenges so much greater that many, many families face.  I know I should focus on all the "I can't believe he is doing this" moments that Brady has already accomplished.  I know all this.  But as I look around us, and see all these little ones mastering another routine task that my Brady struggles to even grasp, I am reminded how far behind we still are.

Potty training is a symbolic milestone for me. To me, and so many moms, it is a graduation from being a baby to being a big kid.  I wish I had enjoyed the transition more when my now eight year old daughter Molly became a big girl.  She was about 27 months, trying to follow in her big cousins' footsteps who were all potty training about the same time.  She was such a quick learn.  I don't even remember potty training.  One day she was wearing diapers, the next day she was wearing princess undies.  Like everything else with Molly, the transition was quick.  I wish I had enjoyed those moments more with her.  I wish I had appreciated how beautiful those simple steps were with my only daughter.  I wish I had stopped and enjoyed her first word, instead of wondering when the second, third and fourth would come. I wish I had enjoyed how precious and simple and beautiful parenting Molly was and is.  These are the "I wish" moments. 

Brady has been a baby in so many ways developmentally for so many years.  It is challenging when you look at your little boy and you see an incredibly handsome child staring back at you, but when I step back my view is clouded by the knowledge that he is still just a little boy so completely and utterly dependent on us for everything.  Brady needs help getting out of his crib.  Brady needs help to eat.  Brady needs help with stairs, getting in the car, getting dressed and yes, having his diaper changed.  He falls often, he is unsteady on his feet and he still has no words.  Brady has very little independence.  As a parent, the transition from baby to toddler to big boy has not happened.  It is a challenge.  It is exhausting.  It often feels like we are no moving forward. Special needs parenting is tough stuff.

As tough as some days are, I am blessed in many ways.  I have had the beautiful experience of watching a young girl grow day by day, step by step from a sweet active baby to a precocious toddler, to a "big girl" so curious about life and so open with her heart.  I know what parenting is.  I know parenting is suppose to be and what the true definition of parenting is.  Parenting is everything and anything.  It is unpredictable and so very precious.  I also know that parenting is learning that it is ok to struggle with every milestone, from the first few breaths to those first shaky steps, even if they come so much later.  I have an appreciation for beautiful little moments that I am not sure I would, if not for special needs parenting.  Even with the frustration and worry Brady has brought me as a mother, I have been given the experience of a different kind of beauty and appreciation for the gift of parenting  

Potty training hasn't come yet.  Potty training may not come.    I must remember milestones don't define my son, my daughter or my parenting. Brady is not quite the big boy I had imagined he would be at four years old. He is much more.  As a parent, I am much more than I ever believed I could be.  Yes, special needs parenting is tough stuff, but when the rewards come, they are just that much greater. 

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Amy Ronayne Krause November 02, 2012 at 04:13 PM
Erin, You are a thoughtful and amazing mom. You are right. Milestones are not the way to grade what is going on for you and your family. You all have A+++ in our book. We love you. Love, Kurt and Amy

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