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Marta: I thought Miguel’s medical problems were going to tear us apart, but we have actually grown closer. Tomas works, and I’m home with the kids. Our oldest son Sammy is very active, although he tries to be quiet! He is always bouncing around, getting into this and that, and I admit I turn on the TV for him sometimes more than I’d like, so I can concentrate on Miguel. Miguel gets so excited to be in the middle of everything – he doesn’t have any voice with the trach but you can tell by his eyes and how he smiles how excited he gets when we talk to him. Sammy is already learning some sign language and is trying to teach Miguel.

Tomas: We’re definitely both more tired these days. I go to work early in the morning, then I come back and take over for Marta and immediately it’s getting Miguel’s food ready and hooking him up to his feeding pump, suctioning him, changing his diaper and making sure he’s comfortable. Then I’m thinking about playing with him and with Sammy too. By the time I actually am able to be a father and a husband, there’s not much time left over for me at all. Having a sick child can really cause a lot of stress! Marta and I are both so tired all the time that we can snap at each other.

Marta: Mostly we argue about planning, because my husband is not a planner at all! We clash about who’s going stay up all night with Miguel when the nurse calls out or who’s going suction him all night when he’s sick. It’s usually me who ends up doing it because Tomas has to work the next day, but we try to take turns. It can be frustrating, and exhausting, but we have managed to keep our marriage together.

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John: After Ruby came out so sick, well, things just fell apart between us – Ruby’s mom and me. Ruby was a total surprise for us, we weren’t trying to have kids. Ruby’s mom, she has her own health issues with her lupus, she has a hard time getting around and taking care of herself. We were living together before Ruby was born but Ruby’s mom lives with her sister and her kids now.

With all that going on, Ruby’s care was going to fall to me for sure; Ruby would have had to live with me since her mom doesn’t have a place of her own. I have a good job, I make plenty of money so that wasn’t the issue. But I travel all the time for work, I visit companies that use our technology, so I’m gone probably four or five months of the year.

It just wouldn’t work. Who would be there for Ruby? I would have had to quit and try to find a new job, but there aren’t many jobs in this part of the state. Looking at the whole picture, her mom and I were on the same page that a home vent was not right for Ruby.