Today we were officially told Lucy has global developmental delays. Significant delays in every area of development.
It's not like I can deny how delayed my little girl is. I live this reality every minute of every day. Hearing that is crushing though.
I have four special needs kids. My second, third, fifth, and sixth. I am able to see improvement in each, over time, and I've learned to cling to those small, sometimes almost invisible, improvements. I've learned in the dark times to reflect on the progress, and to rejoice in every single milestone reached.
Tobiah has improved a lot in his social struggles, and with help can have successful social interactions.
Naomi will sometimes talk to people she doesn't know.
Nette can walk and is becoming more confident in climbing.
Lucy can orally manage solids and drink a half full or less bottle without needing to constantly stop.
All of these things might seem small, but for them they are skills that we've fought so hard for.
I work hard to focus on the positive, and to keep the right attitude about their challenges. I want my kids to know that nothing is impossible when they try their best, I want them to know I believe in them, and that I will always be their biggest cheerleader. I want them to know I will never stop fighting for them.
There are times, though, that these things are so hard. What I heard today, despite already knowing it, felt like a punch to the gut. Days like today I find myself crying out for mercy, desperate for improvement, longing for this life to not be my own.
Lately so many special needs parents have blogged about finding a way to just accept things and be happy. While I think being encouraged to keep a positive outlook is so important, because having a positive attitude is a key piece to successfully parenting special needs kids, I think dismissing the negative and refusing to acknowledge it is far from healthy as well.
Sometimes this road is hard, and sometimes it hurts like crazy. Not because you are devaluing your child and having a pity party, but because as a parent you want every good and perfect thing for your child, and facing significant challenges, while perhaps is your child's reality, isn't the good and perfect we desire.
The point I hope to leave with you is that it's ok to have bad days. It's ok to have days you hate the challenges your child(ren) face. Acknowledge your feelings, and do what you must to deal with them (my personal favorite is expensive chocolate), so that tomorrow you can wake up the fighter and advocate your child needs.
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