Why I Had to Get Out from Under My Grief as a Special Needs Mom

Why I Had to Get Out from Under My Grief as a Special Needs Mom August 18, 2018

 

For the past almost six years, I have been raising an amazing little boy. My son has beautiful brown eyes and gorgeous eyelashes. His cheeks are full, and he has two adorable dimples. Dinosaurs, trucks, cars, paw patrol, and transformers are his toys of choice. My son greets all people with a huge smile and a hug. In addition to those beautiful attributes, my son also has numerous medical conditions that disrupt his happiness. Many days he feels too sick to play. A lot of his life has been spent at home or in hospitals. Due to his illnesses, I have felt tremendous grief and sadness watching him suffer in pain. However, as I close in on his sixth birthday, I’ve come to realize that no mother or parent of a child should live their life filled with grief.

Grief is a powerful emotion that consumes us. When I was in the thick of my grief, I found it impossible to connect with anyone. The sadness and anger I experienced took over all aspects of my life. My inability to control my emotions made friendships impossible. Most importantly, my grief interfered with my ability to be a good mother.

In my son’s early days, I spent a lot of my time cataloging his deficiencies. Doctors and therapists tracked his progress on charts. Instead of using the charts as a tool to see his improvement, I saw them as a mark on my parenting skills. I felt responsible for his delays. Anytime he failed an assessment my grief consumed me.

Caregivers and parents of children grieve for several reasons. My grief was a result of my son being born with numerous illnesses. Initially, I felt responsible for his body not developing correctly. Next, I felt guilty for not doing enough to help him grow. Finally, I blamed myself for not being proactive and advocating enough with doctors.

What made my grief worse was that I had very little support. We lived in a community where there weren’t many kids with disabilities. My son struggled to play with other children.  Additionally, I had a tough time related with parents of typical children. My family struggled to understand the magnitude of his diseases. Many of our relatives distanced themselves from his struggles.

The more isolated I became the anger and bitterness began to bubble over into all aspects of my life. I lost interest and focus in my career. My marriage became fractured and incredibly stressed. I pulled away from every person that tried to help.

I put all of my son’s health conditions on my shoulders. Instead of asking for help, I decided to be a martyr and do all of it on my own. For years I managed all of his appointments, therapies, and coordinated with his providers. I was determined to do it all.

Martyrdom isn’t a cute look for any mother. Why I thought I could do all of it myself I will never understand. However, I had to walk that road to realize that I needed help. After a year and half of no in-home help, I found myself completely burned out.

I couldn’t sleep, eat, or think about anything than my son. While I tried to be everything to my son, I lost every part of my identity. Losing my identity caused my grief to consume me to more significant levels.

Initially, I grieved not having a healthy son. The only trait I wanted in a child was good health. When he came to the world full of illness, I grieved that dream very, very hard.

However, when I lost my identity, I started grieving the life I lost. I realized I felt resentful towards my child. When I evaluated my emotions, I forced myself to admit I felt angry. My son could not control his health. However, I was angry his health disrupted our lives.

When I made this realization, I felt terrible and guilty. I had no right to be angry at my son for being sick. The restrictions his health put on our lives were not a burden. I realized that to get over my grief; I had to accept every part of my son.

Sure his health prevented us from going out. We had to go to a lot of appointments. He also had to go through a lot of procedures. I could not change any ANY of those factors. The only thing I could change was my attitude. My attitude had to switch from being angry and resentful to a manner of being grateful for him.

How did I get to this point?

When I realized I was angry at my son’s diseases for obstructing our lives, I realized that I couldn’t live in that place anymore. Being angry is not a good look for any parent. I got tired of feeling mad, unhappy, jealous, and bitter about everything.

My child came into the world with a lot of medical issues. I had to stop being angry that I didn’t get a healthy child. That resentment got in the way of my ability to see my child’s strengths. I lost out on so much time being angry that I missed out on enjoying my son. When I let go of my resentment, I was able to love my son unconditionally.

Finally, I learned an extremely important lesson about parenting. No parent has a child that meets all their dreams and goals. Kids are imperfect creatures with their own minds. I realized even healthy children are demanding and stressful. When I saw that all parents struggle with balancing their grief and hope, I realized that my parenting experience wasn’t that different.

Even though my kid has medical conditions, there are plenty of kids dealing with the adversity of their own. Children are living through abuse, neglect, mental health issues, and poverty. Children can have learning disabilities, physical disabilities, and behavioral difficulties that make parenting challenging.

The best thing any parent can do raising any kid is to accept their child for who they are – not who they want them to be. When I let go of my dreams, I was able to embrace my son and see his strengths. I stopped being angry and upset. My life started filling with smiles, excitement, and happiness.

Yes, my son has medical conditions, but those diseases are a tiny fraction of him. He also loves to learn, give hugs, run, jump, and play. My son is kind, loving and full of life.

Did I get the perfect kid? Nope.

However, I did get a child that is more awesome than I ever could have imagined. When I realized my son’s fantastic personality and abilities, I stopped grieving and started living.

I encourage all parents to start living.

Grief is no place to stay stuck.

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What Are Your Thoughts?leave a comment
  • Lucy

    Given the trauma many autistic people go through as a result of their parents’ nonstop grieving and martyrdom, thank you for this article. It’s important for parents of disabled kids to see how and why, while their grief is understandable, it is important that they find ways to get past it, for the sake of themselves and their children. I personally haven’t suffered at the hands of martyr parents (overprotectiveness to an extreme, yes, and even been physically hurt once by a parent as a result of parental stress, but not martyr parents, and the parent who did do the hurting regretted it and apologized sincerely and made up for it).

    But, a lot of other autistic people suffer directly as a result of parental martyrdom, which, if a parent does not get past it, can damage the parent/child relationship and is yet another potential source of ongoing stress for the child as well as the parent. So yes, other parents need to see this article, which tells them how, and why, martyr parenting is understandable yet hurtful, from a sympathetic perspective. Thanks again for writing it.

  • You are very welcome! I am glad I got out of it.

  • Clancy

    I understand a tiny bit. My daughter was diagnosed with Type 1 diabetes at the age of six. Most T1D kids can lead pretty normal lives as long as they and their caregivers are careful. I was OK when she went away to college, and she lived at home for her first graduate degree. But when she went away for her second graduate degree, halfway across the country, was when it hit me. She was going to live alone for three years. If something went wrong in the middle of the night, there would be no roommate to call an ambulance, and there was no way we could be there. I was frightened for her, not helped by the couple times she had seriously low blood sugar in the middle of the night and she called me to walk her through what she needed to do, because her mentation was affected. I know this is a tiny fraction of what you face, so perhaps I should not have commented, but you have my moral support for the little it is worth.

  • I don’t want anyone to believe they CANNOT share the struggles their kids face. Every child has adversity, it’s not a competition of who is worse off. Heck any of us could die randomly. Either way, I’m am sorry you felt so scared. I know what that feels like. I’m glad she was able to call you and have you help her. That shows you did a good job teaching her!

  • I have had a wonderful group of adults that follow my blog – that have helped me understand HOW important it is for me to be a positive force for my son. I completely view adult autistics as my allies. I am grateful for all of your advocacy and helping parents understand. Please be patient with us as it can take time to realize and get out of the grief. My case was amplified because every year my son got sicker and sicker. With each illness, a new layer of grief was added. I finally realized this year – no matter what happens – this is his life. Time to embrace it and stop being scared and feeling sorry for myself.

  • Please don’t ever feel bad for sharing. I value all feedback and all the stories. Your courage and tenacity to help your child – helped your child make the right choice to call you. My son is hypoglycemic and I understand HOW scary that is. Diabetes 1 is a life-threatening condition, and can absolutely impact life, reduce the quality of life, and impact life expectancy. So these are REAL challenges you and your daughter face. My son’s conditions are all treatable the same way as your daughter. Sure he has a few more – but life-threatening is life-threatening. If you have 1 or 10 – it still sucks. You are welcome to be here, share, and feel empowered to know that your stories matter.

  • Lucy

    I know this is a thing that needs patience, and that it can take time. The important thing is to eventually decide to make the change, because making that change is what ultimately helps the kid(s) and the parent alike. Whenever that change happens (preferably before the child grows up, but since growing up takes a long time, that leaves plenty of time for adults with young children to come to that realization before then)