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Coping with the Diagnosis: Two of my three children have a disability

GUEST POST BY NANCY E.:

My good friend Mary asked me to write about what it was like to be the parent of two special needs children for her blog. She asked a LONG time ago. I had much trepidation about committing something to words and for those who know me; they would probably be very surprised, especially because I am not one to keep quiet about most things. When it comes to certain topics, however, I tend to be a steel trap. The more I thought about writing about my experiences, the more I felt nervous and anxious, but at the same time felt perhaps others may benefit by seeing, if for any other reason than to know, they weren’t alone. But then I thought, maybe they don’t give a rat’s ass about that either. Then I came to the conclusion, what the hell. Some people find comfort in validation of their feelings at times, especially their deepest and most vulnerable feelings. With much thought, I decided I would write a ditty for the blog and if I never got invited to write again, I would at least know I am not as entertaining as I thought I was.

I have three beautiful, vivacious, trying, and very individual girls. My oldest is mature beyond her years and has been since the day she was born. My middle child is a spit fire through and through, but her smile will melt your heart. My youngest is a princess to the core and has never met a sparkly, pink, frilly, lacey dress she didn’t like. Now, onto the reason for this post: my middle daughter has Down syndrome and my youngest is autistic.

There are many caveats I would like to clarify prior to continuing, but only one is really important and that is: if you don’t like raw and honest narration, stop reading right now and go find yourself a feel good, happy ending article that tells you everything is unicorns and rainbows instead.

When my second child was born, my oldest was 17-months old and more responsible than some adults I know. Pregnancy was tolerable and her birth was a dream. It wasn’t until 3 hours later, were we told by an uncouth nurse they thought our daughter had trisomy 21. Our world was rocked to the very center of what holds any parent grounded. We didn’t know what to think, what to do, who to talk to. My very first thought after the shock lowered to a simmer was, “who would take care of her after we were dead? And why the hell did this happen? Where the hell is God? What does this really mean? Why us? Why?” I couldn’t wrap my brain around the news in any shape or form.  People tried to be kind; tried to say the right thing. Quite frankly, there isn’t a ‘right thing’ to say In fact, telling people the news was miserable. To see the pity in their eyes, to hear the “God only gives you what you can handle” (my all-time favorite, insert a facetious tone as you say this).

We certainly appreciated all the support, all the hugs, prayers and condolences we received. Yes, I said condolences. No one actually said “I’m sorry for your loss”.  But in our reality, we lost a baby. No, our child didn’t physically die and I do not at all equalize our experience to physically losing a child, but metaphorically speaking we lost the baby we idealized. The baby we dreamed about for nine months. The baby we had high expectations for and all these amazing plans for her to accomplish with her big sister paving the way. We lost THAT baby and had to accept the one which was delivered. There is so much uncertainty with the birth of any child, but ours has some extra layers and no one can argue that. I’d like to see them try.

She is a happy, full speed ahead, and “I can do anything I want to do because I said so” 9-year old. I wouldn’t trade her in for anything in the world and I thank God every day for the gift he gave us. People look at us with pity, and in reality, they are wrong. The joy and perspective she has given us is immeasurable. Do I have disappointments?…resentments? Of course I do. Every time I see friends with children her age. Every. Time. Every time I see them pass her up developmentally whether it would be playing soccer, or moving up into the next dance level. Every. Time. It stings. How do I cope with these feelings? I drink. A lot. AND, I have an AMAZING husband without whom life would be impossible and there is no way I could do this without him. Do you realize that families of children with disabilities have an 80% divorce rate?! So what do we as a couple do? I yell a lot. At my husband. He nods a lot and yells back. We drink a lot. Did I mention that? Travel a lot and talk a lot: together. Most importantly, we fight for our marriage. We make the effort to carve time AWAY from the chaos and all the emotional and physically draining work we do.  Exercise is a great release and my husband agrees it makes me a much more tolerable wife and all-around person to be around.

There obviously is more to this picture. Our youngest was diagnosed with autism at the age of 22 months. Talk about a sucker punch to the balls. This was a devastating blow and a faith testing moment in our lives as parents. We questioned everything we knew to be true. We questioned our faith and couldn’t comprehend what in the world the good Lord was thinking? All the feelings I mention, while I  may keep them at bay for a while, they always resurface with a vengeance and suffocate me to the point where I question what my purpose in this world really is.

When we became pregnant with our third child, I thought, wow, now my oldest would have a sister like I did. She would have a best friend without whom life would be so empty. I felt I could give her that best friend that would be there no matter what, like my sister has been there for me. Have I mentioned my amazing sister? My Rock? Who next to my husband has carried my broken heart to the road of tolerable repair? Gosh I love that lady.

I remember back during the early times, with our second child, thinking how dark that time was. How much I felt like it was the worst possible thing that could happen. When I had moments of rational thought and clarity, that wasn’t at all the case of course. Especially as time healed our wounds and our love for her grew exponentially. Oh, but, no worries, God showed me. I learned in a split second just how wrong I was. Down syndrome has nothing on autism. Holy cow. This is a beast, and until you live it first hand, you cannot, no matter how hard you try, explain the brevity and the all-consuming nature autism has on your life; ever. When I say it is all-consuming, I mean, all-consuming.

Those feelings of resentment, anger, isolation, insecurity, uncertainty, and a multitude of other feelings I felt before are multiplied beyond any measure. There is never a moment when my husband and I can sit and just sit. I find it hard to hide feelings at times, so isolation is my only solace. If I didn’t, I may have no friends at all or I may commit murder just from the pure anger that boils just below the surface. I may drink a lot, but if I say that much more, everyone may begin to think I have a problem. I don’t. I promise. I am of European decent and we can hold our own when it comes to alcohol consumption I tell you.

What can I say about being a parent with two special needs children along with a ‘normal’ child? It sucks and there are moments where you just want to run away and never look back. I hope to God I don’t screw up the ‘normal’ child. There are moments you want to slap other people so hard you barely have the strength to contain the anger and resentment you feel for their perfect family. This isn’t what I signed up for. But when do you really get to choose? You may think you are choosing your path, but really your path is determined by outside influences you don’t anticipate. All these feelings I am told are normal. I sure hope so because if not, I am one messed up person. Would I go back and change my past? Hmmm. Maybe. Maybe not. That question I will forever ponder as I take care of my children with special needs. Yes. That is what I will be doing while most of you will be enjoying the luxury of retirement and deciding what book to read next when your old. My husband and I have been robbed of the leisure of retirement and the carefree end of life walks on the beach.  While most of you will be enjoying grandchildren and long trips on the rivers of Europe, we will be wondering if we can find suitable caregivers so we CAN get away.  Plan for caregivers for when we no longer can take care of our precious gems.

Bottom line, we love our children to the core and we advocate and raise the bar so high in the hopes that someday they will be independent, vibrant, productive members of society. That is our hope and we pray for the strength and health to continue on this journey with them. Parents of children with special needs are beaten down, exhausted like you have never felt and at the end of the day, and all they hope for is for society to recognize their children as equal peers. They hope someday they can breathe a carefree breath.

I could drone on until the cows come home, and I have many tidbits to share. Hopefully, I will be asked to write again. If not, just know all of you parents out there with those special kids: You are amazing even if you don’t ever hear it or feel it. You are what others strive to be whether you realize it or not. And those dark, sad, unrelenting feelings that melt when you look into your child’s eyes, just know, there are so many others out there who share your trials.

I’m just a mom at the end of the day. I am a mom who makes mistakes in all areas of her life; a mom who doesn’t let just anyone into her circle of comfort because her kids have taught her the triviality of life’s unnecessary garbage…drama, and things like high waist jeans. Really? Those things were awful the first time around!


10997468_10153220978493530_5705375449058996978_nNancy is the very first person I met when we moved to this new community nine years ago; she and her young family moved here at the same time and lived down the street from us. I was instantly drawn to her – she is beautiful, outgoing, hilarious, and the epitome of fun. We have everything in common, and sometimes nothing in common at all. Don’t ask me how that works… over much wine, we’ve come to the conclusion that it just does. I could write about her for hours, but maybe she’ll have to join us again instead. Thank you, Nancy, for peeling back the layers of mothering children with disabilities. You are nothing short of wonder woman. XO – Mary

6 Responses to “Coping with the Diagnosis: Two of my three children have a disability”

  1. Lisa Howell

    Thank you for writing so openly and honestly! I have been playing around with the idea of writing about my son and I’s journey with Tourettes and mental illness and I absolutely ‘get’ what you are talking about! Everytime I hear and read a mothers journey it makes me feel less alone in my thoughts and feelings and fears. Thank you!

    Reply
  2. Anita Breen

    Thank you for sharing your story. I, too was given the gift of raising a child with special needs. I can relate to most of the thoughts and feelings you share in your story. Every time one of her peers did something she would never be able to do, I grieved. Again, one more loss! It’s been almost 4 years since she left us for heaven, and there isn’t a day goes by that I don’t wish to have my “gift” returned! Thanks again for sharing. Your words will reach out to so many people.

    Reply
  3. Mitzi Frieling

    absolutely AMAZING. I’ve always been in awe of Nancy and how she handles the life she and her husband have been handed. She is one of the most amazing moms I have ever met. Her husband too is hands down one fantastic guy. Love them both.

    Reply
    • Amber

      Thanks for writing, Nancy. I appreciate your vulnerability and honest thoughts. Your family is beautiful and you love them well. I hope you’ll share again.

      Reply

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