It’s been way too long since I posted. Things are actually spectacular lately…and subconsciously maybe I haven’t blogged because I don’t want to jinx anything. But the reason I felt compelled to write today is to spread some hope.
Hope has always been my jam. When we found out I was pregnant with Ben, my mind immediately started hoping. Hoping for a bouncing, adorable baby who I could dress up like all those Cabbage Patch Kids I had when I was young. Hoping for trips to our beloved Ocean City and of holidays to celebrate. Hoping for the family I had always dreamed about for as long as I could remember.
When Ben was born and diagnosed with Menkes, our hope was crushed, but after a couple weeks, it quickly resurfaced. Hope was something that could never be taken away.
Then, before she was born, Kelsey was diagnosed with hydrocephalus caused by a stroke.
My hope and dream of a healthy child was crushed beyond foreseeable repair. Then Kelsey was diagnosed with epilepsy, strabismus, hip displacement, developmental delays and much more. While hope was hard to find, it was always there. Heck I even used hope as part of my blog name. 😉
A lot of people have been very, very sad and have appeared to have lost hope in the past few days because of decisions made by our country. I, too, was disappointed with the election results on Tuesday, and most of my disappointment can be related to feelings of the heart. I have two kids who fit into a couple categories that were not respected by our president-elect. I have best friends who have been disrespected. I have a father who would have been disrespected. I have great sympathy and compassion for the under-privileged and misrepresented.
In our family , we have seen some very dark days. There has been a lot of heartache, depression and a feelings of hopelessness.
But today, my nine year old son who wasn’t supposed to live beyond ten years old got an 82% on his science quiz, ate pork, quinoa and green beans for dinner like it was going out of style, and cleaned his room without being asked.
My daughter who was so sad for over a year and wouldn’t play, engage, talk, or walk, gleefully greeted everyone she saw at Target with a booming and smiling “HI!!!!” She also told me she loved me about 35 times by pointing to the words in her communication book (PODD), took off her own coat (zipper and all) without prompting or help, and ate all her meals without the help of TV to cope.
On Tuesday, Election Day, she adamantly told me (in “our” language) that she wanted to use her walker to walk three houses down the street to her cousin’s house to see their dog. It’s been pure bliss for this mom who takes no small step on the developmental scale lightly.
There’s always hope. It’s always darkest before the dawn. Don’t let Saturday’s forecast affect your happiness on Friday. Embrace the Suck and Move the Eff On.
Now, please don’t misunderstand me. Some of the comments that bother me most of all during hard times with our kids make me feel like I should defend my feelings of sadness. That I should feel guilty for being depressed. And that’s not at all what I’m saying. It’s just as someone who has grieved greatly, hang in there. It’s gonna be alright. Sometimes the most beautiful things come out of the darkest of times when hope seems nonexistent. And LOVE always wins.