Without a Crystal Ball

Our Journey through Chronic Illness

Over the past several years, I have lived a life I never imagined. While pregnant I had no clue my child was sick, and I also had no idea there were serious neurological issues going on. Over the time the illnesses have manifested to multiple organs, and his delays have become more pronounced. In the beginning I spent a lot of time being angry, bitter, jealous, frustrated, and hopeless. I allowed myself to be swallowed whole in grief, and I found that I surrounded myself with others who felt like me. The old saying is “misery loves company”. This could not be more true for my experience in meeting other parents in the special needs community. I have had to filter through so many people trying to find anyone that will get it. All any parent wants is someone to confide in, and someone that understands the day to day challenges of raising a child that is medically fragile and developmentally delayed. Unfortunately the community at large can be incredibly toxic. Especially because most of us, and I admit I was too, are incredibly isolated and wallowing in despair. We log online searching for connections, and we type our anger and grief to anyone that will listen. There are support pages for everything. If your child has an ailment or disease, I can assure you there is a support group online. After 3.5 years of being in this world, I try not to spend much time there. While it can be a very safe place to vent your frustrations or get questions answered, it can also be toxic and you will see in fighting among the members. I admit I use to be one of those angry members. Not anymore! This is what I will  do as a mother of a special needs child:

  1. I will no longer be Angry

I am not spending the time I have here on this amazing earth mad about my place in life. There is absolutely no point being angry at anyone or anything. In fact, most psychologists will tell you anger is a surface emotion that hides the true feeling. Anger is displaced and nasty. I will not be angry, and I will not associate with others who lash out in anger at others.

2. I will not be mad at my friends with healthy children

I use to say to myself that no one would get it. I would lie awake feeling hopelessly alone and sad. Each night I would convince myself that no one else in this world could possibly understand the despair and heart ache I felt as a mother and care giver. The God Honest truth is that it is all a lie. There are a lot of people that may not live the day to day, but can empathize with the pain and despair. It’s selfish to assume as a parent of a special needs child that no one will understand. I have found that my closest friends, who have healthy children, are the biggest cheerleaders for my family. They go out of their way to watch our home and animals when we are in the hospital. When we spend time playing, they take notice of his accomplishments and successes. They might not understand his disease, but they understand who he is as a person. These people have taught me to live outside of his disease, how to enjoy motherhood, and how to be happy with each milestone we hit. I tell them never to apologize to me for having a sick child, and I will never be angry at them for having a healthy child.

3. I will never be without Hope

People tell me I’m stronger than they are, but the truth is I am not. I simply hold on to a four letter word each and every day. I have HOPE that my son will respond to treatment. I have HOPE that he will learn skills in therapy. I have HOPE that medicine will improve as he ages and will improve his quality of life. I have HOPE that he will prosper and thrive despite all the obstacles before him. I have HOPE that no matter how hard we have to fight and no matter the mountains we have to climb we will reach our goals.

4. I will never stop advocating

I’m learning more and more about raising a disabled child how everything about this world is built for able bodied and neuro-typical people. There are children like my son that are on the fringe. They appear normal in shape and size, but have bodies that don’t work the same and brains that process differently. I fight tirelessly with therapists, doctors and schools about what he needs to succeed. The biggest flaw in our system is trying to make these unique children and adults fit in to the “norm” of society. We should be celebrating their differences and accommodating them in a way that they can find success on their own terms without being forced in to a model of what society expects. I will never stop advocating for inclusion and respect for adults and children with disability. Every single person deserves respect and to live with dignity.

5. I will never give up on my child

My child is amazing and he has overcome more than I have in my entire life. It is my job as his mom to make sure that he has all the tools he needs to thrive and survive. I will research every thing available to make sure that he gets the best medicine, doctors, therapists and education. Most parents take for granted that their children will grow up and live independently. This is an unlikely reality in our home, but I will never give up hope that with intervention and therapy we can make him a productive member in society. Hopefully by the time he’s an adult the world is kinder to people like him.

I made a conscious choice to no longer be stuck in the negative and anger. It is not easy, and I have days I feel overwhelmed, exhausted, sad and afraid. However, I remind myself every day these five things and it carries me through my day. What do you do to keep yourself going as a parent of a special needs child?

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2 thoughts on “5 Things I will not do as a Parent to a Child with Special Needs

  1. Kathy says:

    I study God’s word and participate in bible study fellowship. God created us all with a purpose and with digging deep in the bible I wouldn’t know how much God has blessed me with a son. who is disabled. I Havel learned its not about me in this world it’s all about His kingdom and how I can help grow his kingdom serve others.

    Liked by 1 person

  2. kelleyjean48 says:

    My child is eleven. I have felt this way many times off and on over the eleven years. It is very difficult for me to stay in the positive as I fluctuate between all these feelings weekly, even daily. I am grateful for reading this this morning however…as my day is just beginning! Surrounding myself with positive people who listen and acknowledge our breakdowns as well as our progress is imperative.

    Liked by 1 person

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