2018 Parenting Motto's + Making peace with our Son's diagnosis
Parenting is tough. Hands down the most difficult task I've faced so far, it is beautiful, chaotic, exhausting and exhilarating. Add a strong willed child or two, and a Chromosome Disorder.... and by the end of one day I'm about ready to throw in the towel. I love my children but I find that my reactions to their behavior, can bring out the worst and best of me. After an especially difficult day, I ran across this beautiful quote and my entire perspective changed.
"God gave those little children to you, mama- YOU. No one can mother them like you can. You may have your work cut out for you, but your'e the one cut out to accomplish it." - Erin Odom
This quote spoke to my soul, it made such an impact on me that I decided it was my 2018 Parenting Motto. I plan on getting a custom calligraphy print of it soon by my beautiful graphic designer, artist and friend, Carly Allred. I've been reading No Drama Discipline: The whole-brain way to calm the chaos and nature your child's developing mind, and it has made a huge impact on how I parent my children and understanding the root of emotional outbursts and improper behaviors. It's been an eye opening read and has given me a fresh perspective on parenting my lovely yet high strung kids. No Drama Discipline is a book I recommend to every single parent out there, you can fully expect to receive one for your Birthday or as Christmas present from me in the near future.
Between my parenting motto and reading several parenting books, you would think I would be all set to rock this whole "Motherhood" thing....but a last, theres one piece missing to my Perfect Parenting Triangle. That is support. I belong to an awesome 20q13.33 Support Group , run by Christina Steckley, a parent of a child with this rare chromosome disorder. It is a simple yet effective online support group for parents and caretakers of children with 20q13.33. I've been apart of it for a couple of years now and love learning about how other children are doing, what medications are helping, and updates on advocating for the overall health and wellness of children with disabilities.
An especially important advocate for disabilities is Collin Farrell. Yep, tall dark and handsome is a parent to a son with Angelmans Syndrome. My support group posted a great article written by Ellen Stumbo from The Mighty, entitled "Colin Farrell Offers Advice to Parents Navigating Their Child's New Diagnosis". It was an inspirational read that gave me so many eye opening revelations. It was such a comfort to know I was not alone. That there are other parents out there who understand the struggles and the triumphs of raising a son or daughter with special needs or other difficulties. One quote in particular made me stop and cry on the spot. Farrell expressed my husband and I's feelings to a T after we got Brody's diagnosis.
“I would humbly say to parents of a child with a recent diagnosis of any disorder that while they may well be experiencing the death of one dream, that dream of having a healthy child, there are a thousand dreams and milestones that are yet to reveal themselves.”
I won't go into the sorrows I felt or the dreams we had for our child that were suddenly shattered. That is an emotional post for another time, but rather I'd like to focus on how I felt after the initial diagnosis and how I coped with it's short and long term affects.
The moment our Geneticist told us our sons diagnosis, I was equal parts relieved and devastated. Months turned into years of slow milestone progression. Everything was so much harder for Brody and it hurt my heart to watch him struggle. Even now, years later when Brody is having a difficult time with a task it's hard for me to stay optimistic in our long term goals for his well being. I'm ashamed of these thoughts, and though I wish I could always look on the bright side, when I am having a particular tough day I tend to live in the sorrow of the moment. I've expressed these feelings to close friends and family and have benefited from their love and advice, but a part of me still feels a slight disconnect with them.
Is it wrong for me to be jealous of the neighbor next door who's daughter, who is the same age as my son, draws stick figure families, suns and rainbows and writes her name with chalk on my driveway? I watch the two friends play together, while one is engaged in imaginary tales of her drawings, I look over at my son happily scribbling in his own little world. His art is different, his creativity is his own, and I wish with all my heart that he would engage in "normal" play with his peers, but thats just not my son. He is different and I'm still learning to embrace what that means for him and our family. Comparing apples to oranges hasn't got me anywhere and certainly won't aid in how I parent now. It's these little moments of disconnect that get me down, but thankfully they are just moments. A fleeting thought of jealousy isn't becoming, but at least it's fleeting. In the Mighty article, Farrell encourages parents to reach out to one another for support and solidarity. It is by doing so that we can bridge the disconnect we feel between ourselves and neurotypical parents and children.
“Only you will ever know truly what it is to feel what you feel, but you will recognize yourself in the struggles and triumphs of others when you hear their stories.”
That connection is what I had been searching for after our 20q13.33 diagnosis, I needed to know I wasn't alone. The support groups I've found online have helped my family tremendously, just knowing that there are parents around the world sharing my struggles, triumphs and pains gave me lasting hope. Little information can be found about my sons diagnosis, but through the use of the advocate groups, our local team of Doctors and medical resources found online, I know we are one step closer to helping my son and others with rare chromosome disorders. Such disorders can't be cured, but they can be understood. My hope is that by sharing my experiences, I can open the conversation about disabilities without any bias or reservations. We are all unique and different, and that is what makes us special. I hope that it will be our differences that set us apart but our commonalities that draw us together.
My overall hope would be for us all to be a little kinder this year. Regardless of whatever personal or family motto you pick for 2018, may you include the goal to be courageous and kind. Kindness goes along way in parenting and even further when taught to our children. Remember, you are not alone. God gave those children to you mama, and only you. Be brave, be true and be kind.
Have courage and be kind
To the Parent, be a little kinder to yourself; you are doing your best, and you must remember that each day brings a new sun and a new opportunity to be your best self.
To the Child, be kind to others. Keep an open mind and an open heart and you'll be sure to go far. Everyone needs a friend and you are just the person to start that friendship.
To the Stranger, we are all fighting our own battles, though some aren't as apparent as others, always show kindness before judgement. Be considerate in your actions.
