Without a Crystal Ball

Our Journey through Chronic Illness

Recently at church, we discussed the topic of pride. The feeling we all have of being proud of ourselves, our accomplishments, and of what we have. I had to stop and think for a moment about how pride was effecting me. I realized that it isn’t necessarily my own pride, but my own insecurity and other’s pride that effects me negativity. This isn’t to say I’m not guilty of being prideful myself, but more over, I am guilty of feelings of self doubt, insecurity, sadness, and longing for what other families have. If I were honest, I would admit that I don’t want to have these feelings. The old saying is that comparison is the thief of joy. There are no more truer words spoken in the context of parenting, and particularly in parenting a child with special needs.

It is difficult not to find myself going to that place where I wonder what would life be like if my child were “normal”, “neurotypical”, or “healthy”. Each and every day I am bombarded with photos, advertisements, social media updates, charts, and graphs that depict how our lives are different than the norm. When I am out with my son, instead of being able to enjoy our time together my time is often spent feeling anxious and afraid. There is no notice of when things can go wrong with him, and I am often reacting quickly to an emergency. When I look to the parents around me, I see them playing, chatting with other parents, and seemingly looking care-free. There is this part of me that desperately screams inside of me and it says, “I WANT THAT.”

I know it’s wrong to feel this way. Trust me I know I should not be thinking these thoughts at all. Unfortunately, these feelings and thoughts often roll over me like a giant wave coming in to shore. I imagine myself sitting on the sand while building a sand castle, and then the wave just hits me and knocks down the castle and takes it back to the ocean. I can feel the tears streaming down my cheeks, and the heart break of what it feels like to lose what you worked so hard on. When I’m crashed with this ocean wave, I am often in the middle of an average day. It will hit me so fast, so hard, and I will feel like I can’t breathe. In my heart, I know it is wrong to want what you cannot have. Over and over, I have heard that the grass is not always greener. Trust me when I say, I know that I should feel grateful and be happy. However, there are days when it’s all just too much to bare.

This frustration then makes me feel bad for even having these feelings period. I know it’s not my friends or strangers fault they have healthy kids. When I watch their lives, I know it is wrong to feel anger and bitterness that we don’t have that same life. When I see the photos of vacations or trips to the beach, it reminds me of how much different things our for our family. I know I should not feel this way. I should feel grateful my child is alive, and I should feel grateful that every day I have the opportunity to be his mom. However, there are days when it’s hard to be grateful looking at feeding bags, venting bags, cabinets of medications, and then my calendar full of appointments for therapy and the doctor. This is not how I expected parenting to be.

I see things on social media of parents talking about sports, activities and the future. Then I look to my own life, and I know my child will never play any sports due to his health. His future is very unknown. While many of my friends are planning and saving for college, I am reading on guardianship and hoping there will be transitional programs to help my son even find a job. At this point in time, we don’t know if he will ever live independent, ever be employed, and we don’t know if he will ever get married or have a family. He is my only child, and for me that means I may never be a grandmother. When I lay my head on my pillow at night, these are the thoughts and feelings that torment me the most.

The worst of it all is these thoughts and feelings are not who I am. Prior to parenting I was the most positive and optimistic person you would have met. My mom always said I wore rose colored glasses, and I always prided myself on seeing the bright side in every situation. There are amazing days, and the days I do have with my son are filled with joy and happiness. Parenting a child with special needs has taught me how to find strength when my tank is empty, and it has taught me that a child will teach you more than you ever thought possible. It is hard not to get stuck in the sadness, the blackness and the despair that is often filling my days. The ability to rise above all the adversity I face takes super human strength. If there were anything I could share with any other parent going through this time, is to say that it’s ok to feel this way.

Too often we have people in our lives that want to tell us it’s going to be all right. I am here to tell you that it may not be all right, but it will be ok. Our lives won’t look like anyone else’s lives, and our children will face and brave more obstacles than most humans go through in a lifetime. It is ok to have moments of doubt, sadness, anger, bitterness, and even jealousy. The only thing I have to remind myself every day is to not get stuck in those emotions. Have the emotions, feel those emotions, and then move on from those emotions. Even though this road is hard, our kids need us to be their advocates, their voices, and their parent that helps them reach their fullest potential. We must not think about the future, but we must take it day by day. It’s ok to feel defeated. I promise you I’ve felt it a million times. However, we have to keep going, and we will keep going. We have no other choice.

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7 thoughts on “The Honest Dark Feelings about Parenting a Child with Special Needs

  1. bethanyk says:

    I am so glad you wrote this. The real ness of it is refreshing. I don’t want to say your pain is refreshing. I don’t quite know how to word this. It is just real. And I appreciate real more than you can imagine! You are human. You want to be out on the soccer field and that doesnt in any way make you a bad person or a prideful person it just makes you a parent who wants for your child that enjoyment that comes from those things. Those things that everyone posts on social media.
    Those things that smack me in the face and make me feel abnormal. Those things on facebook that make me sad when I wasnt even sad before. I am not envious. I am not jealous. I just had dreams for my child and now I have to redefine happiness and joy and dreams based on her illness. And it is so hard. I just appreciate your post so much. I really needed to read it tonight! I feel very isolated and this post of yours made me feel…normal.

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    1. Thank you so much for reading, and I’m glad I could help you feel normal today. Cheers to that!

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      1. bethanyk says:

        Gosh I feel like I didn’t validate you at all though!!!!! I truly validate your feelings!!!!!!

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  2. You did! I hear a lot that I write very raw. Raw is how I feel right now. I feel raw in every part of my being, and writing it just cleanses me. I appreciate your words so much. I hate feeling angry or mad because I don’t have things. I just wasn’t expecting parenting to be this way.

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  3. Leah says:

    I would add, and if you find you can’t pull yourself out of that dark place, it is okay to talk to a professional or if you need to take anxiety or depression medication. I have been there, but when I found that my feelings and anxiety were interfering with my ability to be the mom my children deserved, I sought help from a medical professional.

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    1. Absolutely! I have done the same.

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  4. Brenda says:

    What a refreshingly honest look at parenting a special needs child. Thank you! Thank you for being real! I have a daughter that is 32 who has down syndrome. and you know what, if that is all it was I would be almost okay with it. But…she has some autistic tendencies which professionals refuse to look at, she has a defiant issue that is so difficult. When she was born, I realized that my life, my husbands and my retirement would be so different than anybody else. Then my husband in December 2015 was diagnosed with a terminal cancer. I felt more than devastated retirement is once again derailed to our plans. I love our daughter, she has her challenges that is for sure, but life is very different than what I imagined. Plodding through every day, trying to find the joy in the now, some days as I watch peoples facebook life sharing I feel that pang of a life that is robbed of so much

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