When my daughter Breanna was diagnosed with Cerebral Palsy, I had to verify with the doctor that she in fact was being diagnosed with Cerebral Palsy. I remember that moment so clearly saying, “so she has Cerebral Palsy?” The doctor nodded “yes.” The only reason that I asked was because the orthopaedic surgeon who sent her for her first MRI communicated to me that she had sustained brain damage that explained her symptoms and then when I relayed the information from the orthopaedic surgeon to her paediatrician, he said, “Oh, she said it was CP hey?” I had to Google what CP was!!! No one used the correct terminology. Then when receiving her formal diagnosis from a Neurodevelopmental Pediatrician, even she didn’t use the words Cerebral Palsy hence the need for my simple “so she has Cerebral Palsy?” question. If this isn’t an indication that when given your child’s diagnosis that you are left to sink or swim I don’t know what is. From the absolute beginning of our journey with Breanna’s Cerebral Palsy, it has been like a physical and mental agility test in how we can respond to every curve ball thrown on the unknown path to life with our family’s journey with Cerebral Palsy. I wouldn’t change her for the world but I would love to help change practices and supports to help make things easier on so many levels for families with whatever their diagnosis may be.
As a parent to a child with a disability, life has never been the way I had pictured it would be but that’s ok and I am learning to embrace our journey. One of the biggest adjustments for me has been my role as a woman in my family. I was raised to be independent and support myself. My parents ensured that they BOTH did traditional “blue/pink” jobs so that my sister and I didn’t see limitations to gender roles. They were equal and I knew no different. Now, I find myself living a more traditional “pink” role and as much as I love my family, I’m having the hardest time accepting it. I have to dig deep to have confidence in our choices for me to be home (I was a junior high teacher before) while my husband is the financial provider. I am 100% certain that we are making the right decisions for the right reasons and I can fully support other families’ choices to do the same, but I feel personally that I’m still not providing and contributing enough. I’m not providing enough in the ways that I was raised to and I’m not showing my own children gender equality and independence…after all, as society views a stay-at-home mom, I’m just a mom right? If only there was more guidance and support because I know that I’m not the only mom of a child with a disability feeling like this.
Once a parent, goals and dreams, whether personal or as a family, have to shift. As a family dealing with a child with a disability, that shift becomes it’s own set of agility tests and it’s a wild ride let me tell you! There are a lot of topics that are easily overlooked and more support and strategies relating to…well…adulting…should be offered along the way. Respite for mental and physical health, marriage, financial management, retirement, sibling support, and goal reorganization are examples of issues that have left me feel lost on our journey with Cerebral Palsy. I find it is easy to alienate myself from life and friends because I often can’t relate to conversations and what is happening in their lives. This doesn’t mean though that I don’t want to hear about everything or that I’m not truly happy for them. I don’t know the latest fashions and trends, but I can tell you the latest therapies for CP. Renovations, dream homes, vacations, the best restaurants, newest gadgets, the future, and the list goes on… I wish I could talk it all, but finding our happiness individually and as a couple comes with different priorities now. Worlds with my closest friends often feel so far apart that it’s lonely. If only there was more guidance and support because I know that I’m not the only mom of a child with a disability feeling like this.
All frustrations and unknowns aside, what has this all taught me?
Priorities shift. Whether it be vacations, food, time management, conversations, sports, friends, toys, etc…priorities shift and that’s ok! It is also ok to let go of things and people who take too much away from what should be a priority.
What is a need and what is a want. With disposable income prior to having kids, I was able to purchase a lot of wants. It has been an amazing transition for me to discover what wasn’t really contributing to my happiness, what I can live without, never miss, and what I don’t have the energy to focus on. This is a continual learning process, but I find it is a very rewarding one and one that sets a great example to our children.
To trust in my gut. There have been so many occasions where I have second guessed myself whether it be at medical appointments, in relationships, or career choices but that feeling in my gut is one that I have learned to not ignore as it is a guiding light throughout our journey.
Respite is important. Respite is a term that sounds so easy to incorporate, but it is something that I find so hard to make time for. Slowly I am making time for myself again and ways to make smaller goals to live healthy. This being said, I had to. I need to be present in my family’s life and what was happening to me physically and mentally wasn’t allowing me to be. I’ve had to force myself to make time for doctor’s appointments, exercise, time alone, and time with my husband and friends.
To talk about things. It took me about 8 months after Breanna was born to really come into the role of being her mom after all of the trauma and one of the turning points for me was a group conversation one day at our first Mommy Connections class. The talking and sharing was therapeutic for me. This type of group conversation and support has continued and I am now friends with an incredible group of local and virtual moms who interestingly enough, we all basically met on Instagram. How lucky am I to be part of this group who advocates so fiercely for their own children while cheering on each other’s. Who cries, laughs, and consults together. Who just get it. It’s ok to have multiple tribes, but the tribe who gets it is a super important one to hold on to.
The people who love you will always be there. I have been so fortunate to build connections with so many amazing people who make me a better person and to let go of the ones who weren’t a part of my journey for the right reasons. The truest friends will always invite you to things, even if they know you can’t go and they will always be there, accepting your circumstances even if they don’t completely understand them.
And finally how much kindness matters. When you have a child with a disability, whether it be a busy day of appointments, how someone treated you or your child, your child suffering and there’s nothing you can do, or just the weight of the world being too much, you wish for kindness and grace from others. You just never know what another person is going through and what they require at any given time. So offer them grace. It might be just what they need in that moment.
Awareness is increasing for parental mental health under a variety of circumstances; unfortunately it’s not enough. I have a long way to go in discovering balance and harmony on our journey, but I think I’m on my way and am advocating for what it missing. I feel that I have to choose my words carefully because I don’t ever want Breanna to feel like a burden to our family. It’s not her that is broken: she never needed fixing. It is the life re-routed and the lack of support from our broken systems that creates the roadblocks. If there is anything that I hope she learns from my experience as “just” a stay-at-home mom, it is that a woman is defined by many different roles and those roles can change, that it is ok to ask for help, that it is possible to reach for whatever goals that she sets for herself and her family, that it is ok to feel lost and want more, that it is ok to have priorities and be selfish in organizing them, that there is a tribe out there who will “get” and support her without question, and finally kindness and true love because we all know that our world can use more of them.
– Mercedes Bender
Follow along with Mercedes and her journey on Instagram live_it_all_in
My name is Rachelle and I am the owner and founder of Momentum Health & Wellness . I am devoted to inspire and promote health and wellness to individuals and families. I want to create a community where people feel motivated to share their wellness journey and to encourage one another to be positive role models in their home, at work and in the community. I offer prenatal fitness classes, postnatal fitness classes, fitcamp, personal training, injury rehabilitation, and corporate wellness.
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