Generally, we move through life knowing that bad things happen to good people. Children get cancer, total accidents take beautiful lives, and tragedy touches the most innocent places. We understand this reality, for the most part. I don't believe anything can truly prepare you, though, for when tragedy becomes something synonymous with our own child.
When the beautiful life comes with the frightening diagnosis, tacked on like an inescapable anchor.
For me, it's been over two years since I gave birth to my son, and the moment of change was delivered to me by a frail, short haired women the hospital called from the Chaplain. I've never been good at remembering faces, but hers is one that I will never forget.
My son was born with half of his heart missing, in an unequipped hospital. He was sent nearly two hours away from me via helicopter, where his tiny and fresh life was still, not promised.
Again, it's been over two years. I am one of the lucky ones that can say that my little boy is still here, kicking the world behind and taking every name down like a trophy. I don't take this for granted, because as a "heart mom" I know this is not a signal of safe ground, and I know others have not been as fortunate. Charlie runs now, laughs, and roars like a dragon. I think about the beginning days of it all, and I think about them often. What do I wish I would have known? Along with many things I found, that I hope every parent in my position gets to find as well.
1.Facebook groups. As off as this sounds, these support groups absolutely pulled me through. Each time I felt myself sinking beneath the medical waters, and stress. Every time Charlie had a mystery symptom and I needed fast support from a group of people who had kids like mine, they were there. These people are here when you think your hospital has not done all they can for your child, they are here to answer anything from the hardest questions of all to insurance questions. Support is out there. If you need help finding it, please message me and I will point you in the right direction.
2. I wish I wouldn't have been afraid to step in and 100% be my child's advocate. It's a scary world, the medical one. I'm not saying doctors don't know what they are doing because they are saving our children, but please do not ever underestimate your role as a parent, and how well you know your child. My son has prolonged feeding issues, and it's taken a very long time to find out that I needed to take matters into my own hands, and not use a blind trust. Also, don't be afraid to talk to other parents. They are the ones caring for these children daily.
3. Don't be afraid to ask for help!!!! Make the fund-raiser, take the break. BREATHE. This journey is so, so hard. You cannot do this alone, and I promise, you don't have to. Do what you need to do to get through it. There are many forms of help available. You can utilize a Ronald McDonald House. You can contact Gracie's Gowns for a personalized hospital gown. Sisters by Heart sends care packages to parents of children with HLHS like my son has. Leave a comment below if you have any more links or organizations others can use.
4. These children, are FIGHTERS and are worth it. You are going to cry, you are going to scream, get angry, and if you have any, your faith with certainly waver at times. But I need you to know, that these children will surprise you, and make you feel so much pride. They will teach you more than you could have fathomed. You will be irreversibly changed and forever different. This journey is also yours, so hold on. Find your tribe, and do not give up hope.
1.Facebook groups. As off as this sounds, these support groups absolutely pulled me through. Each time I felt myself sinking beneath the medical waters, and stress. Every time Charlie had a mystery symptom and I needed fast support from a group of people who had kids like mine, they were there. These people are here when you think your hospital has not done all they can for your child, they are here to answer anything from the hardest questions of all to insurance questions. Support is out there. If you need help finding it, please message me and I will point you in the right direction.
2. I wish I wouldn't have been afraid to step in and 100% be my child's advocate. It's a scary world, the medical one. I'm not saying doctors don't know what they are doing because they are saving our children, but please do not ever underestimate your role as a parent, and how well you know your child. My son has prolonged feeding issues, and it's taken a very long time to find out that I needed to take matters into my own hands, and not use a blind trust. Also, don't be afraid to talk to other parents. They are the ones caring for these children daily.
3. Don't be afraid to ask for help!!!! Make the fund-raiser, take the break. BREATHE. This journey is so, so hard. You cannot do this alone, and I promise, you don't have to. Do what you need to do to get through it. There are many forms of help available. You can utilize a Ronald McDonald House. You can contact Gracie's Gowns for a personalized hospital gown. Sisters by Heart sends care packages to parents of children with HLHS like my son has. Leave a comment below if you have any more links or organizations others can use.
4. These children, are FIGHTERS and are worth it. You are going to cry, you are going to scream, get angry, and if you have any, your faith with certainly waver at times. But I need you to know, that these children will surprise you, and make you feel so much pride. They will teach you more than you could have fathomed. You will be irreversibly changed and forever different. This journey is also yours, so hold on. Find your tribe, and do not give up hope.
If anyone wants to add to this list, feel free in the comment sections, and don't forget to share to anyone you know who has a newly diagnosed child.
-Abby
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