When our daughter Callie was born, she was diagnosed with a chronic heart condition and we would later find out she would need a lower leg amputation. Her disability diagnosis rocked our world and subsequently knocked it on it’s axis.
Quite simply, we were devastated and navigating overwhelming emotions of shock, disbelief, anxiety, grief, anger, fear, and despair.
After battling through the many emotions, I was left wondering “What now?”
And in all honesty, I do have to preface this with–I am STILL navigating through many of these emotions as a parent. I think I will continue to work through these during my lifetime but I’m sharing these ideas for the parent out there that just received the scariest news of their life.
This piece is for that mom, dad, or caregiver who is asking “What now?”
Here are 5 encouraging bits of guidance:
1) Give Yourself Time to Acknowledge & Accept
Allow yourself time to come to terms with the disability. You’ll go through various emotional stages and they’ll likely repeat themselves as there may be “trigger” moments. My trigger moments were pregnancy announcements, baby showers, and birth announcements–I would be gutted by those.
Some days you may be accepting and fine with your child’s disability, the next you’ll be full of rage, anger, and upset. Cursing the universe and lamenting about how unfair this situation is.
Other times it’ll seem like you’re learning to navigate your new “normal”, then you’ll feel like you’ve backslid some. You will have good days and bad days, and the important thing that you should try to remember is that is how our lives are naturally. Everyone experiences ups and downs–absolutely no one’s life is on a continuous upward trajectory.
This is perfectly normal, and the expression “Take it one day at a time” could not be more true.
And if you are overwhelmed with one day at a time, take it one hour at a time.
2) Be In The Now
Often with as a parent with a child who has a new disability diagnosis, you may start regretting things you hadn’t done before the diagnosis or start being scared of the future.
Playing the “if only” game does nothing but stunt your progress. You need to learn to live in the present and be grateful for everything you do have now.
I’m not telling you to be a Positive Polly when things are really hard, but I do truly believe that by keeping your feet firmly rooted in the now, you can strategically focus on things that are positive.
Celebrate the little things happening now. Your child made eye contact? Fantastic. Your child took their first step? Amazing. You get in to see the specialist without having to wait for 6 months? What a miracle. You were able to speak with a social worker who can help you apply for state aid and now you don’t feel so alone? What a gift. Positive thinking will actually help in your progress to improve your life supporting your child with their disability.
3) Seek Support
You may feel like you’re all alone after your child is diagnosed with a disability.
But you’re not alone.
I promise.
There’s a world out there full of other families that are navigating the same diagnosis. Seek them out. Search for agencies, support groups, blog forums, IG accounts, Tik Tok accounts, and dedicated sports leagues for children (and people!) with the same diagnosis and connect with them.
Finding families who are going through the same struggles (and triumphs!) can uplift you and make you feel less alone. They will also serve as a fantastic pool of resources for learning how others cope, navigate, and what tools they use—physically, psychologically and emotionally—for creating a better life for themselves. Plus, you might even find yourself in the same position I’m in now–using your experience to help others!
4) Learn About the Disability
You may not know anything about your child’s new disability, or have misconceptions and stereotyped beliefs of that disability.
Many disabilities are on a spectrum and are so varied in its mildness or severity, so don’t feel as if you have to put a “label” on anything right now. Use this time to learn as much as you possibly can about your child’s disability, diagnosis, prognosis, and treatment plan. If available, find an agency that can teach you and your family new living skills to help improve your child’s independence, mobility, or life at school.
Take time to learn about technology, medication, mobility equipment, therapy options, assistive devices, and treatments to help you support your child live their fullest life.
5) Be An Advocate
Learn to stand up for child and their needs. As a parent, I fully believe this is a natural muscle we parents flex but after a disability diagnosis, you can feel like you’ve lost your footing. If you have worked your way through all the previous stages, you should have a better understanding of what your child will need, physically and emotionally.
You will encounter people —family and friends too—that will be negative, overprotective, dismissive, or even patronizing. You’ll need to be strong for your child (and yourself!) and teach them how they should be treating your child, in the most diplomatic way possible. If that doesn’t work and they still continue to impact your child’s experience, progress or independence, you should feel absolutely zero guilt about letting these toxic people go.
Read: 3 Signs it’s Time to Cut Ties with a Toxic Family Member
I know it’s hard right now. I know you are scared and overwhelmed. Things may never be the same as before, but new adventures, new people and new strengths will emerge.
Trust me, I know.
Sending you love and light,
Jaime
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