It’s so difficult …
>To look into your child’s tear-filled eyes and pain-filled face as he silently pleads with you to make it all better and you don’t know what’s wrong. You know his bones are the size of pencil lead and it seems like when you move him a certain way, he cries. Yet, he also struggles to breathe because his lungs are filled with secretions. Is it his bones, the hardware in his back, or the pain of breathing that makes him cry? You just don’t know.
>The aching back you have after an entire day of leaning over your child’s bed suctioning nonstop, changing diapers, adjusting his position, putting DAFOs on, taking DAFOs off, giving pedialyte and one medication or another every few hours, giving breathing treatments, the Vest, the cough assist, stroking his head, holding his hand, and just trying to make him comfortable.
>When your 6 year old tells you he doesn't like you because the only person you pay attention to is Jack when he doesn’t understand that if you don’t pay attention to Jack, he will end up in the hospital or worse.
>Deciding at what point the vent settings are too high, the supplemental oxygen is too high and your inability to make Jack comfortable requires that you seek medical help. Knowing that if you decide to walk into an ER with Jack you’ll have to fight to keep him from being admitted. Knowing that you hate hospitals and the way the people in them treat you. Knowing that you have to be careful not to jeopardize Jack’s life because of how you feel about hospitals and medical professionals.
>Being so tired that you can hardly keep your eyes open, but knowing as soon as you start to drift off, the pulse ox will alarm and Jack will need suctioning, or it will be time for another breathing treatment. Knowing that the only day of the week you have to catch a few extra hours of sleep is Saturday and that opportunity is now lost and you will feel the consequences dearly come the middle of the week when you can barely drag yourself out of bed in the morning.
>Just wanting to crawl in a hole and cry because you are so tired, so sad, so scared and just so damn sick of living this way of life.
Sometimes this is just so difficult ………