Special Needs

It’s been ages since I’ve written and how I’ve missed it. I’ve had so many thoughts, feelings and ideas come and go over the past few years, yet finding the time to write has escaped me. Over the past 3 1/2 years my world has radically changed from acknowledging that I’m a ‘new’ mommy to the additional fact I’m a mother of two (amazing) special needs children. Fundamentally, this doesn’t change anything in regards to my love and gratitude for the awesome privilege of being a mother. It is AWESOME. In. Every. Way. It changes everything in regards to what I thought this picture of having a husband and two kids would or ‘should’ look like. That picture is gone and a new one is being created day-by-day. Old dreams, standards and expectations are being replaced by new realities and hopes. It’s a crazy blend of bizarre, amazing, devastating and mind-blowing.

A little about my boys: family photo 2

Carson was diagnosed at 14 months with “mild” Cerebral Palsy (CP) due to some delayed developmental milestones. Later, as Carson grew he was specifically diagnosed with Spastic Quadriplegia (a form of CP that affects all four limbs). Carson has higher tone through out his body which makes using his arms, fingers, legs and feet more challenging. Some days picking up a cheerio can be nearly impossible because his hands are clenched so tight. Carson practices walking with a walker, sitting on a backless bench to strengthen his core and does countless types of therapy to teach his mind and body to communicate more effectively. Everything is work for him and yet he does most of it with a smile on his face.

My younger son, Chase wasn’t walking at 16 months and while many assured me he was just a late walker, intuitively I knew something was different. His balance was that of someone who’s had to much to drink when he stood up. And, when he crawled (which he still does at almost 2.5 years old), he would hit his head often on the floor or other objects. Today this has improved significantly however, Chase still struggles to know where his body is in space and loses his balance easily. His mind knows what to do yet his body can’t keep up (yet). Chase’s formal diagnosis is Ataxia, which means his body has involuntary movements. Thankfully, Chase is able to feed himself with his hands and utensils (sorta) and use a walker to get around (with some assistance). He too is in various therapies working on gaining more balance with a concentration on intentional movements.

In terms of speaking, neither of my boys have the ability to form many words yet aside from “Hi” or “Yeah”. While they work hard to move their tongues to form the words, the coordination isn’t there (yet). Sometimes, spontaneously a new word will pop out and we throw a party (not really, but we get really excited). In summary, both boys work their ***’s off every day for everything they do. Even watching a movie takes effort. It’s amazing to watch. Truly.

This journey (and we’re just beginning) has been mind-blowing. It really HAS blown my mind. It has put new perspective on: what it REALLY means to be patient …. and I mean slow-the-hell-down patient, loving unconditionally no matter who’s watching or what we look like (and I don’t just mean the kids, this applies to my husband and I as we’re arguing over how one of our boys is ‘performing’ while in a public place, fitting in (or not), spending money (hmmm a new outfit or therapy so my boys can be independent? NO brainer) and last but not least what it really means to be committed in my marriage (having special needs kids makes richer-poorer and sickness –health look like small potatoes).

There just aren’t any good answers for the incessant question of why or why me/us? It just is. It’s our journey and we’re learning not only to accept it, but embrace and enjoy it. This process is all about radical acceptance + next actions + never, ever, ever losing hope. I do know this… I will never, ever look at someone in a wheelchair, someone who stutters, someone who can’t socially interact well or any other type of impairment in the same way. The truth is WE ALL HAVE SPECIAL NEEDS. Some people have CP, but many of us have other, more ‘subtle’ special needs that also deserve to be honored and respected. In the end I pray that I continue to change and grow as a mother and friend to my boys and husband. I hope my tank of patience, determination and acceptance continues to enlarge. Last, I KNOW that God doesn’t make mistakes. So, thank you God for creating Carson and Chase exactly as they are – they are perfect and marvelous little beings. I hope they touch peoples lives throughout their journey – even if just a fraction of how much they’ve touched mine (and my husbands).

Comments

  1. Cecilia says:

    Your journey is and will not be easy, but you and your family are beautiful. God Bless! You are in my prayers. Love, Cecilia

  2. Nikki,
    You are an amazing mom! The journey ahead will be amazing, fulfilling, hard, lonely, teach you a lot and – your children will be ready for this world!

  3. Christine Friel says:

    Nikki, Thank you so much for sharing with us about your journey with parenting Carson and Chase. Your perspective is so important for all of us, in particular those who also have special needs family members. I really appreciate your “radical acceptance” and hope. Your family couldn’t have a better advocate, partner and mom.

    Much Love!
    Christine

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