Parents:
Adam and Robyn Frost
Age of parents: 40 and 36
Child’s name: Lucy
Age: 20 Months
Diagnosis of child:
Prem baby - developmental delays, possibly a genetic condition.
We are waiting confirmation.
What are the biggest challenges facing your child on a daily basis?
Things have been hard lately, Lucy has been in a lot of pain, she has been having an extremely hard time swallowing, and has been breaking out in hives. We’re not sure why. Sometimes it feels hopeless, and sometimes I see little glimmers of hope. I’d be lying if I said I don’t have extreme moments of guilt. Moments where I wonder when the crying will stop, and getting frustrated because she can’t communicate with me, or tell me her needs. It’s hard. BUT we are making progress. Things will get better!
What are the happiest moments you have with your child on a daily basis?
Lucy loves the film Raya and The Last Dragon, it keeps her calm and takes her mind off her pain. We all curl up on the couch, holding each other and watch Raya a few times a day....
Are you married?
Married
Has your special needs child had an effect on your marriage?
Our marriage has taken a bit of a back seat, we are just coping. and doing the best we can for our family. It will get better and there will be more time for us. I love my husband but I just cant see the wood from the trees right now.
Are your family and friends supportive?
Yes but same thing - can’t see the wood from the trees right now.
What has your child taught you about yourself, both positively and negatively?
I’m going to be honest. I’ve never thought about myself being a special needs mom. And it sounds terrible. But here I am as a mom to special needs child. And I would be lying if I said I didn’t wish this all wasn’t happening. This last 6 months has been a complete tornado of information, misdiagnosis, and grief. We love this girl more than anything, and we are so proud of the progress she’s making. But it’s hard not to feel sad. I feel like I’m grieving so many different things right now, it’s hard to put it into words. I’m grieving the life I thought we were going to have. This has all just been dropped in our laps, and we are doing our best, but it’s hard to know if we’re making the right calls. We love Lucy so much.
What is your dream for your child?
I wish this was a dream and we could wake up from this nightmare and Lucy would be fine and we could go back to how things were before.
