From Micro-Preemie to Man-Child

Like most parents, today the Big He and I look back at where we were on this day 15 years ago. That’s because today is our son’s birthday. We celebrate every year with gusto because we came so close to not having a happy outcome. Most know the story so I won’t bore you with the details…okay maybe a few. Our boy came into this world 16 weeks early. He weighed 1 pound 13 ounces. He had 2 surgeries within the first 3 days of life and was in the St. David’s NICU, ATX for 104 days. We were told in the early days that he would most likely not make it and if he did there would be deficits due to his early arrival. He made it. He has thrived. When people ask me how can I have so much faith after all the things we have been through, I can’t see how you couldn’t. Our son is here despite all the reasons he should not be here. Not only is he our rainbow baby, he is our miracle baby.

He continues to amaze us. He is growing into a loving, compassionate, empathetic young man. Oh don’t get me wrong, he is still all teenage boy with the hormones and attitude and smart @$$ mouth but deep down under the stink and unsettling amount of hair that grows on his face, he is an amazing kid. The Big He and I are very proud of who he is becoming. He is someone that does not worry about what other’s think about him. He want’s to always help his friends and has a hug waiting for me or his dad if we have had a bad day.  He could care less about social media (we force him to post a few Instagram pictures). He does march to the beat of his own drum, which is usually playing some sort of country music from Kevin Fowler to Johnny Cash.

Happy Birthday Baby Boy, We love you more!

 

 

All my love,

The She

 

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Wife, Caregiver or both?

Several weeks ago, I was having a hard time. Like dealing with the enormity of what this disease is, what it is doing to our family. I was angry, I was very sad. So, I did what I do, I wrote. I put it down on paper. I’ve been sitting on it. Rereading it. Seeing where I was then and where I am now. I have said this terminal illness thing  has your feelings riding the roller coaster of life and it is in high gear. I think I am ready to share it. What I wrote. Probably because there are other wives and caregivers that have similar feelings and if this helps then that makes me happy. These are difficult things to work through, I am lucky enough to have someone I talk with routinely to help me understand and process things. [Note: Everyone should have a Pamela in their life like I do]

Here you go…

I have been a wife for 27 years. I love that title. I love my husband. I don’t mean I love my husband when he is not pissing me off, I mean I love my husband even when he is pissing me off. We have been blessed with our relationship. From the start, I knew we were going to be together, I would have a partner in crime and I would be his wife, forever. We are truly blessed, and I know that.

But then came the diagnosis. A terminal disease. No cure. Progression. Disabled. Help bathing. Help feeding. I became a caregiver. I am still his wife but now I take on the role of caregiver. I don’t want you to think I am complaining. I’m not. I am glad he is here for me to take care.  I’m scared. I’m mad at the disease for taking away my happily ever after, my forever. It sneaks up on you, caregiving. In the beginning, it’s the same as it ever was. Then there are the little things you need to do to help out. You notice you no longer can ask him to get up and shut the door or run to the store real quick to pick something up. Make sure the door is locked or get that glass of water once you are in bed. His strength is decreasing, he walks slower, he gets tired easily, he can’t do the little things I took for granted. I now pick up the slack when before he did. I now make sure he is okay. I watch for choking, I watch for tripping. I watch. I can’t remember what it was like to just take a walk with him and hold his hand, rise up on my tip toes and kiss him. When we go for walks he is in his wheelchair we hold hands and I bend down to kiss him.

He is proud and doesn’t like asking for help. I have become a no nonsense person and I get mad. But I get it. I don’t like asking for help either. Before if we had an argument is was because he put more time into his work then his family. Now the arguments tend to be around stupid things that in the end really don’t seem worth it. But at the time they were probably due more to the frustration we are dealing with then the stupid thing that made him mad or made me mad.

Here is the thing, I am his wife. I have cared for him when he was sick in the past, and never once thought of myself as a caregiver. I was just taking care of my husband. So, why now, do I see it differently? I wish I didn’t. I wish he didn’t.

I think we both have to work at keeping our roles as husband and wife center in our daily lives.

So there you have it. Today, I am thinking of changing the title to Wife, Caregiver, Badass or all the above!

All my love,

The She