Wednesday, February 25, 2015

The Hard Weeks

I have the tendency to want to highlight all the magical and happy moments of our life because, well, there are so many. People on the outside often look upon a situation like ours with pity and pretty much all the time I want to scream it from the rooftops - I really, really love our life. No need for pity here. Both Jon and I are doing things that fulfill us. We are chasing dreams. And we have the most amazing, perfect, living and breathing child who seems to be the icing on the cake of this whole adventure. So, no. Pity or pats on the back or condolences are not needed and I don't go looking for them.

You may wonder why I don't often write about the hard things. There are many reasons, but mostly because I don't naturally gravitate toward the negative in this micro preemie situation. I am well aware that many like Jack do not survive even 24 hours after birth. How could I be anything but grateful for his life and for our existence together? Plus, as the years go by and highlighted by our own experiences, my personal ethic regarding human life is expanding. I have proof right in front of my eyes that all life is precious. It's not cliché or political talking points in our house. There is innate dignity in all human life, no matter ability or deemed worth.

I also fully understand that many need to talk about the hardship. Because, you guys, it is hard. Talking about it and admitting that we need help or support is part of the healing process. It's how we get through. The rare times I have let you in on the hardship, you have been there.

A perfect storm was brewing last week and it took the wind out of my sails. Parenting a child with special needs is draining to the very core. I'm not going to list off all of Jack's medical or neurodevelopmental issues, but let me assure you, it is rough. And amidst this, we have been trying for months to find the right place for our guy to go to kindergarten.

Just so you know - This is not about a mom being emotional about her child going to school for a full day. I get that. I will be that mom. But this is different.

This is about a mom worried for her child's physical safety. This is about a mom worried that someone could take advantage of her non-verbal child. This is about letting go of control and praying to God that someone will be there to make sure our boy doesn't fall down the stairs and break his neck. This is about getting the right people in place so our child can eat while at school, be nourished, and not refuse food or choke to death. This is about a child who has cortical blindness and finding a way for him to learn may be difficult. It will take someone who really cares. This is about finding people who are not just afraid of a diagnosis they see on a page.

Finding this school, this group of people, it is so hard. It is stressful. So I'm feeling all the things this week.

And then I read this. Our state's home for developmentally disabled adults is absolutely failing its residents. These are people like Jack who will never be able to live independent lives. Residents with mothers and fathers, sisters and brothers, human beings who deserve lives of dignity. Horrific abuse is occurring (much more than what I've linked here) and I just sit and read about these kinds of stories taking place so close to home and think about Jack. I told Jon we have to do everything while we are living to make sure Jack doesn't end up at this place.

Sometimes it is too much. Most weeks are full of beauty and life, but other weeks are hard.


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4 comments:

Amber said...

Just wanted to send some love your way.

Marianne said...

Oh I am so sorry it's been one of those weeks. Abuse of special needs people? There must be a special place in hell for those people. Thinking of you.

Carie Edson said...

I love you for your transparency Jess. Praying for you this week and for the weeks to come. There is such beauty in your story...praying it makes the impact on others it should. <3

Kesha E said...

Hang it there -- know that your community of readers is sending loving and supportive vibes your way. This too, as you know, shall pass.