An Unsettling Feeling Comes Over Me
Today I learned of some unsettling news (nothing to do with my family) but I was immediately disturbed and the hamster in my brain started running on its wheel faster than a pregnant woman after pickles! I generally like to write at night, so I went to take a hot shower and get ready for bed. I truly could not get out of the shower fast enough and then brushing my teeth felt like it took hours because I needed to write THAT BAD!
I have begun to become close to many heart moms, moms that I have never met in person. I already feel like they are family, part of a family that I wish no one was a part of. But here we are. I wish I had all the money in the world to help all of these people, and while we have enough to keep our family above water I just do not have enough to give to everyone.
This is why I have started fundraising. I’m sure many look at my Facebook posts asking for money and roll their eyes, in fact, today someone put the laughing emoji on my recent fundraising post. I was instantly irritated but had to stop and think this poor soul just has no idea the amount of anger and trauma my family has been through. For some reason that also brings me comfort as much as I’d like to be angry at such an ignorant individual, I’m glad they will never know the pain that so many of us heart parents have/ will, or are going through.
1:100. That is the magical number. ONE IN 100 HUNDRED babies will be born each year with some kind of congenital heart disease. I bet if I asked you if you thought your baby would have CHD you would have said what is CHD? What does it consist of?
Not to mention that there are an insane amount of different kinds. Every mom I have come across has had a different diagnosis from another and from my very own child.
If you would have asked me I would have CONFIDENTLY said “I work out, I eat healthily, I do not drink or smoke, there is no chance I will have a sick baby”. I STILL THINK THAT! The picture below was me when I found out I was pregnant.
I HAD A SIX-PACK! I was 29 years old, worked out constantly, ate all the chicken, veggies, some red meat, and very seldomly drank. I did not drink more than 1 cup of coffee a day (till it made me nauseous) I did not drink while pregnant, I thought I did everything right. HOW did my baby get so sick?!
The truth is that no one knows why. We speculate “too much caffeine” “drinking” “smoking” “drugs” Etc. But no one actually knows why any of us had a baby with Congenital Heart Disease.
I find it important to speak out, to be as loud as you want. Be angry, express your feelings because every single one of your feelings is completely valid. Be unapologetic, if you are mad at God, say it. Now I am not religious and many times I am so thankful I’m not because I feel like I would be extra angry. I do not want to make this about religion because I do not care if you think pigs can fly. I want everyone to know that whatever they are feeling is completely valid.
There will be people in your life who leave you during this hard time as well. LET THEM GO! this is not about them. This is about YOU and YOUR baby. People will make it about them “you are so busy now” “you don’t have time for me” “I was shocked when you called”. OHHHHH YES, I heard all of these statements! At the time I tried to justify them and make excuses for them thinking I needed that friend. I couldn’t imagine losing that friend.
Now? Now I say “go fuck yourself”. How dare you be so incredibly insensitive and selfish to make my child’s illness about YOU. Take it from me, because I lived through it. People will test those boundaries that you set, and those people will also leave when you do not allow those boundaries to be crossed.
Friends and family who genuinely care about you will make it easy. They will check in with simple “how are you?” or “what can I do to help YOU?”. They will not make it about them. They will understand if you do not text or call back within a day or at all for that matter. They’ll try again in a few days or a week to see how you are.
For those of you who are friends or a family member reading this here is a list of ways to help your loved one in a scenario like having a child in the hospital:
Help with other children in the family
Help with getting laundry done
Help with cleaning their house
Cook and drop off hot meals
Give gift cards to nearby restaurants and coffee shops
Ask what you can do to help them
Offer to care for family pets
Offer to help grocery shop
Offer to drop lunch off at the hospital (bought or made)
Give gas gift cards
Create a meal train
Offer to help create a caring bridge account
These are just a few things that could make a world of difference in someone going through a traumatic event, life a bit easier!
Here is a list of Christmas Items that would make any heart mom (or mom in general) feel loved:
Skin Care Regimen ( I am almost positive I aged overnight with all the stress!)
Custom baby blanket (We all want one of these for our little one!)
Fuzzy Slippers (this was all I wore when I was in the hospital with my baby)
Warm Bath Robe (Comfort is key!)
Bath bombs (to try and help her relax when she can)
Face Masks (To help relax her)
1 Hour Massage
Water Bottle (she’s either breastfeeding and needs to stay hydrated or will simply forget to drink water period!)
Heart Warrior attire (or whatever type of reason they are in the hospital) Use code heartmom10 for 10% off at my Etsy shop or Leave a comment, or message me personally for 25% off!
Healthy-ish Snacks (her favorite protein bars, trail mix, dark chocolate) RX bars are my personal favorite!
Take care of these families, PLEASE! I cannot single-handedly take care of everyone. Take care of each other, and remember that we are all in this together and that I am always, ALWAYS here to listen ❤
If you missed my last blog post, you can find it here.
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