"Your Child Could Die," and Other Hospital Mom Truths

Your child could die.

Its very serious.

We will do the best we can.

Your the parent of a chronically/critically ill child. I myself, am the parent of a heart baby. My son has hypoplastic left heart syndrome, which means his left ventricle is underdeveloped, and non-functioning.

You spend many days and nights in a hospital room, reminding nurses of what your child likes/dislikes, trying to make small talk, feeling completely separate from the rest of the world.

     

Life is forever changed

Whenever I did leave the hospital, it was strange. Anytime someone looked at me, I just wanted to scream.

Do you know what i've been through!? My baby is sick! He could die, and your just looking at me, your just continuing life, taking your healthy children for granted, and here I am. Don't you see me?? Cant you see I'm hurting?

I can't even tolerate people complaining, because it all seems so minor to me now. Nothing in my life is the way it was before Charlie.

Milestones are different for your baby, they are bigger, and they are something to celebrate. In the back of your mind, it means they are here to smile for the first time, laugh, crawl, eat by mouth, etc. Your baby made it this far, and even though your happy about how far they've come, and how far you've come, there is still so much... so much.

Daily Life

Nights are filled with anxiety, hooking up machines, checking vital signs, examining their body for any changes, whispering in their ear about how much you love them, how badly you want them to stay with you forever, and watching that little chest go up and down. I know I cant sleep for hell. Charlies vocal chords were scratched from the breathing tube... so his breathing is always scratchy.. and my mommy instincts just don't allow me to fall asleep with all that going on. So, you spend your nights awake, thinking about the worst scenarios possible, researching to the ends of the internet, and reaching out to people like yourself.

You follow other parents like you on Facebook, you connect with other families, you follow their child's story, their battles, them overcoming so much, them beginning to decline, and you watch as they lose their children. You see parents break down at the hospital, you hear that unmistakable cry of a mother losing her child, and it hits the pit of your stomach like nothing else ever has.

When will that be me. When will I have to see my baby, so full of life......fade away? When will I be forced to notify everybody that the worst has happened. How could I ever possibly say goodbye to him? 

Sometimes, you go home,

In fact, some of us are lucky enough to go home for a good amount of time. Some of us get to remove the oxygen, and simply give a cocktail of medicines a few times a day. Some of us get to watch our children progress, and change, and turn into little people. Some of us go back to the hospital, some of us simply go to doctor visits, but one thing is certain: Each of us lives with the constant truth that hospital days can show up at our door, uninvited. Maybe while we are cooking dinner, maybe while we are fast asleep; perhaps days before special events such as birthdays or Christmas; always un-welcomed. Some are lucky enough to escape the hospital life, but none of us are lucky enough to leave that worry behind. Its always going to be there, as long as we get to keep our child. 

How do you deal with knowing they could die?

Thinking that Charlie might die, most of the time to me is pointless. I usually feel like, if he is going to die, and if my time with him is short, I do not want to waste it thinking about something that is out of my control. I want to give him a life full of love and happiness the best I can, for however long it may be. On days that I do think about it, I mostly imagine what was going on before he would pass. What I mean by that is how sick is he? Is he in pain? If Charlie ever looked up at me, after a long fight, with those big beautiful green eyes, and I just knew, I knew he was too tired, and he was ready to go, I would hold him close to my heart until he slipped away from me. I would be there for that milestone, because my baby boy would be free. Although I would be left behind to carry the unimaginable heartache with me for an eternity, I would also have the memories, the love, and everything this little boy has taught me in my life. I want him here with me, but I do imagine that with the heartbreak of death there is also a feeling of happiness knowing your sweet child is free to run like he deserves, be pain free like he deserves, no more wires, no more pokes, tests, drugs. Just heaven. Something about it is beautiful, and frightening all at once. Having a sick child will do that to you.