Archive for the 'Creepy Genetic Conditions' Category

22
Mar
16

Peace

I have always loved Holy Week. I grew up in a liturgical church that revolved around the seasons of the church calendar. I had dreams of these things for my new baby, but we all know the NICU brings changes and how I approach religion changed a lot.

I couldn’t be the “bring my kid to all the things” parent I thought I would be from the get go. I had anxiety about taking him around a bunch of people once we were allowed to. Things just didn’t work out. Now that we have been in the habit of watching online and not being part of a community. It is hard to go. It doesn’t help that the Mr. and I have conflicting viewpoints on the style of worship we prefer.

I have a long way to go in teaching my son to know that kind of peace you have when you know there is always someone there watching out for you and loving you no matter what. Someone who is stronger than you who and who knows your weaknesses and knows your needs before you can think them or even put them down on paper. I want to remember what it felt like when I believed I could turn all of my problems over like blowing dandelion fluff into the wind.

I use this blog to vent worry and frustration so that I can come to terms with things and feel more at peace. When I am comfortable in my own skin and with what’s going on around me, I can create that safe haven for my family that church always was for me growing up. Right now, I am just so consumed with worry. I have just an instinctive bad feeling that something is wrong, and it scares me that either I am projecting my anxiety or a mom just knows.

May you have a reflective Holy Week and a Happy Easter.

 

15
Mar
16

Don’t Tell Me It’s “FINE”

He’ll be fine.

It’ll be fine.

My daughter only weighs 5 pounds more than him and she’s FINE.

I knew someone with clubfoot and he’s fine.

My preemie was never in isolation and she’s fine.

FINE. FINE. FINE.

Yeah, he’s mostly fine. I am not fine. This may turn out to be nothing. I hope to God and all the other powers that be that it turns out to be nothing. But if it is something? What then?

Someday, I will learn that when an acquaintance asks me how I am the truth is almost never a good idea.

“How are you today?”

“Ok.”

“Aw, it’s a pretty spring day. Why are you just OK?”

Because I’m waiting to hear if my child has a serious condition and the specialist appointment is still 3 weeks away. Because, I just don’t feel fine today.

I need to let it go. I need to stop the negative cycle so I don’t beat myself up when (hopefully) everything is fine.

The difference between me and some other moms out there? There have been 4 (5 if you count the scary pregnancy) years of moments when a ton of crap wasn’t FINE.

Because I actually like and respect this person, I went with a bit of truth. (mistake)

“Because we have to add a specialist from Children’s to Drake’s care team…again.”

Then, I had to give more of the story than I really feel like telling. I really want to be that optimistic mom, the one who is unshakable and believes the best until the worst is confirmed. Unfortunately, being positive is something I suck at.

To top it off, he only ate about 300 calories yesterday. GRRR.

Poor blog, I only feel like journal-ing when I’m “sad mad.”

 




Drake’s 3rd Birthday

February 20th, 2015

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