The Emotional Rollercoaster

I was an emotional wreck for a long time after I had Mikey. I went through every emotion and it was exhausting. Just when I would pick myself up again and feel like I was OK, I would fall back into a heap all the while trying to put on a brave face so people weren’t worried about me.

At times I have felt

  • I can’t do this – I’m not strong enough to parent a disabled child
  • This is all my fault, if only I went to the hospital sooner, if only I was more aware
  • How will I ever get over the fact that this dream I had for a perfect little family is gone?
  • Guilty for being upset that my child is disabled
  • Unbelievable grief for the child I never had
  • Traumatized by the birth I had
  • Worried about what his future will be like and what our future as a family will be like
  • Overwhelmed by all the appointments and information
  • Ignorant to his diagnosis and what it actually means
  • Jealousy towards all the people who have it so easy with their perfect children
  • Why me!? What did I do wrong to deserve this?
  • All consuming love for our little angel

It’s actually quite hard writing that all down, admitting all those feelings I’ve had. I guess I want other parents to know that it’s OK to feel this way and you are definitely not alone. Trust me it gets better. I now look at that list and think it was totally reasonable for me to feel these things and I can’t believe how far I’ve come emotionally. Now I am a super mum! I am strong and working hard to do absolutely everything to make Mikey’s life amazing!

I thought it might be helpful to answer some questions that I wanted to ask people over the past 12 months.

Do the feelings go away?
For me yes some have, but I imagine some never will. They have certainly become less consuming, mostly I have become a lot better at dealing with them.

How do you deal with the unknown?
At first many people don’t receive a diagnosis for their children. A diagnosis like CP is often given when a child is 1 or 2 years old. Parents are left worrying constantly about what it all means.
I guess I have arrived at the conclusion that it doesn’t matter. You will love your child unconditionally regardless of what they can and cannot do. My son is 13 months old and we don’t know if he will walk or stand independently, or if he will ever have the fine motor skills to hold a pen and write. We will do everything we can to give him the best chance of being able to do these things, but if or when it happens doesn’t matter. We can’t change the past, and wall that matters is we just love our little man so much.
We have learnt to focus our energy on dealing with today rather than worrying about tomorrow. It took time to get to that point but we are a lot happier when we just enjoy being together.
In Australia a diagnosis can assist with funding and therapy so it is important to receive some form of diagnosis from your pediatrician to access everything your child needs.

What has helped me?
I asked to be recommended to a really good GP instead of the one I had been using for years just to fill my pill script. My GP created a mental health plan for me. I had 10 weeks of counseling that I really just used to vent, I cried a lot during those sessions.

I leaned on my husband a lot. I am lucky to have such a supportive person by my side who has picked me up so many times. He let me mope on the couch while he cooked dinner and took care of me.

I let people help me, something I am not normally good at. I let friends and family come over and watch Mikey while I could have a sleep. I visited friends who let me vent and cry and laugh.

I leave the house quite a lot. Whether it is simply going for a walk or for a picnic in the park I get out so I am not left to sit at home feeling sorry for myself. I believe getting fresh air is good medicine.

I also make sure we have down time between all of the appointments just with our little family. Sometimes I say no to invites just so we can spend time together lazing about the house, we all need to have these days.

When I was ready I let my in-laws look after Mikey without me so I could do some exercise, go to the beach or even just read a book.

I didn’t care about the housework. I put Mikey, our family and my health first. House work can always wait.

Lastly the most important thing I have done is put myself out there to meet people in similar situations. Through our early intervention appointments at the children’s hospital I have met some amazing families and this has been life changing for me. To have a support network of people with children the same age and with similar disabilities is incredible. They just get it. I encourage you to ask your therapists to put you in touch with other families, to join local disability groups or play sessions and to reach out to other parents, it might be as life changing as it has been for me.

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