I am so excited you guys! Another thing that she is going to do is give my contact information to newly diagnosed parents so I can offer as much support as possible to them! I am so excited for that because it is such a blessing to have people in your life that has gone through what you are going through.
I messaged three medical schools to see if I can do anything to help bring awareness to their schools. So far no answer but I know it can take a little bit to check email. I have messaged two art schools to see if they have some artist that want to help paint helmets. If you personally know any artists at all that want to do this anywhere please put me in contact with them. It doesn't matter which state because craniosynostosis happens everywhere and I am sure I can find a need for them! I also got in contact with a wonderful lady that makes cute dolls for children going into the hospital. They are called Shadow Buddies and she said that she would be more than happy to help me with this. She even has cute helmets that she can put on them or she can bandage up their heads! So so so cute! Here is what they look like:
I am so pumped for this you guys! Helping out others going through this is amazing and if you want to help in any way possible or know of some places where this is needed please shoot me an email to powersmama713@gmail.com. Now to think of some cool names for what I am doing! If you have any ideas please leave me a comment!
That's the update on what I am doing, now its time to write what I originally made this blog post for lol. I wanted to write a post of 8 fun facts about parents whose child has craniosynostosis. With Eli's surgery coming up and meeting some awesome cranio-parents I thought this would be a fun post to write. Ready to read it? Alright here they are:
Number One
We stare at every babies head- I know
this sounds super creepy and no we are not creepers, I promise. Well
most of us aren't creepers anyways. I can only speak for myself. It's
just when we see babies now its completely different and we know how
important it is to find craniosynostosis early. If we are being
honest here, we are staring at your head too.
Number Two
We know more about Craniosynostosis
than anyone else- We are a bit obsessive. We have
researched until we are blue in the face. What are we doing on our
phone? Looking up pictures of the surgery. On the computer? Looking
up more information about craniosynostosis. What does our life
consist of now? Research, research, and you guessed it more research. Haven't heard about craniosynostosis? Well then, sit down for the next hour while I explain to you everything I know. Trust me its a lot.
Number Three
We are very busy- Some months we have a
lot of doctors appointments! We are running around all the time and
some of us have a lot of driving to do to get to the doctors. We are
not meaning to ignore you but if we are being honest, most people are
not at the top of our priorities list right now.
Number Four
We are VERY overprotective and terrified
of getting sick- Especially right before the surgery. Oh you want to
come visit? Cool, well all you need is a change of clothes (please
burn the ones that you wore over here) and please stand there in the
door way while we asses your health and get some cultures to test to
make sure you are not carrying any illness. It can take up to two
hours and no you cannot leave and come back because we will have to
start the process again. Oh and go wash your hand 5 times before
touching anything please and thank you.
Number Five
We covet our child's head and freak out
if even a scratch happens to it- Okay so their head might be harder
than the normal persons because of it being fused together but we
still freak out when they bump it. Do they make football helmets for
babies? Bubble wrapping the whole house is so much work.
Number Six
We are strong- Anybody who has to go
through this must be strong. Do we cry? Yes of course we do but then
we pull ourselves together and get what needs to be done, done. We
have to see our baby get poked and prodded, be held down for x-rays,
be put under for CT scans, and at the end we have to hand over our
precious baby to another person who we don't know very well that will
cut them open and remove pieces of their skull. If that doesn't make
you strong, I don't know what will.
Number Seven
We talk to anyone and everyone about
Craniosynostosis- Okay, so this is not true for us all. My husband
didn't like to share at all. His work just found out about the
surgery and about Eli's condition which we have known about for 8
months. He is more of a private person. As for me I am sitting here
screaming it from our rooftop. No seriously I have my megaphone
(doesn't everyone have a megaphone?) and am on my roof screaming
facts about craniosynostosis. Okay, okay I am kidding but lets be
serious. I tell everyone about it, even complete strangers. Somehow the subject always gets to be about my son and his surgery. My
husband is not impressed with me talking to everyone and their
brother about our sons condition but I have diarrhea of the mouth and
he will just have to forgive me.
Number Eight
We love our kids more than anything-
This is the most true. Eli is my third and last child (hopefully) but
I love all my kids more than anything in this world. I am willing to
do anything for my children. I obsess, and research, and don't sleep
well because of my love for my children. I sit here and try to make
the best decision for my child and when I make that decision I doubt
it constantly. I just want my children to be happy, healthy, and well
rounded people.
There you have it eight fun facts about parents dealing with craniosynostosis. While all of these may not be true for every one of us I think a lot of cranio-parents can relate! Have a blessed day!
Peace and Love,
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