Marriage and having kids is hard work to begin with but when you throw in a baby with a life threatening disease and developmental delays that is the true test! I’m not going to say our marriage is perfect or horrible because I believe we are somewhere in the middle.
Some days I want to hit him over the head with a frying pan but then other days I adore him but I think that is normal even for couples that do not have the struggles we face. I think the key to marriage, whatever hurdles are faced, requires both parties to work harder than anything else in life.
Rich is a wonderful father and Ethan idolizes him. They often play “cars and trucks” together. When Ethan isn’t feeling well he cries constantly, wants to be held all day and night and we are stuck in the house for days or weeks. So I can go a little stir crazy.
Rich understands that on certain days if I don’t get out of the house by myself that I will turn into a monster! He participates in feeding, bathing and putting Ethan to bed, no questions asked, just so I can be an “adult” sometimes!
Even though he does spend a decent amount of time with Ethan and has been to many doctor visits, physical therapy sessions, etc., Rich is often in denial about his disease and our situation. He can’t seem to grasp the fact that our lives are changed forever. He just expects things to be the way they were before Ethan, 2+ years ago. This is probably the biggest strain on our marriage.
We are very different in the way we handle things which most of the time is advantageous but in Ethan’s case, it can be very tricky. Everyday is a challenge for our whole family. We have had many joys and disappointments. I can honestly say that I wouldn’t want to ride this rollercoaster with anyone else but my husband, Rich. He’s an amazing co-pilot and partner on good days and bad!
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