I guess I should have made this post a while ago, but with the rash of ‘fake’ pages on Facebook, as well as pages for kids that have conditions that are being exaggerated for monetary gain and sympathy, I thought I would spell it out and be clear about who we are, what this blog/facebook page is for and why we are doing it. By we, I mean me mostly. My husband knows about it, he reads it, and sometimes I ask him if he is ok with me posting certain pictures on Facebook and I will show him videos and he will tell me he doesn’t want me to post it. And that’s his right, we are a 50/50 partnership in this parenting gig.
First off, I want to assure you we are VERY REAL people. But being VERY REAL people, also means we have a VERY REAL life outside the cyberworld, and have to take steps to protect our privacy and safety as well. ESPECIALLY our children.
I will never use my husband’s name on the blog and he doesn’t typically comment on the facebook page. He reads it (I think) but being as most professional research is done online, I wouldn’t want anything that is written about our family (the good, bad or ugly) to sway any decision to offer him a job, promotion, or anything professionally.
As far as my daughter goes, you all know Superman has an older sister. She is 5 at the time of this writing, and her nickname on the blog is ‘Diva’. No, that is not her real name 🙂 – its one I made up based on her personality. Its not even a nickname we use for her in real life. However, I have almost called her it several times after she roams the house modeling her latest invisible fashion. I do not, and will not use her name for privacy issues. A) she is 5 years old. That is a HUGE safety flag for me as a mother. B) she will one day be a grown woman and like her Dad, be going off into the professional world and I would not want her family life to sway any decision for the name that she decides to make for herself. She will choose to share what she wants to when she is old enough to make that decision. I will protect her privacy fiercely. And I know those of you who know her in real life will respect that decision and not use her name anywhere online. If someone slips up I will simply remove the comment and remind them.
Also, any of our professionals pictured or discussed, I will NEVER post their names, most of the time I don’t even picture their faces. It’s not because they aren’t real – they are very real, but they also deserve the same respect of privacy. They go home to families and other lives outside of their professional ones and they deserve the same since they are not the ones posting the information.
Superman’s name has been used off and on during the course of our online world, and its in videos as well as fundraising sites. I prefer people to just refer to him as Superman, but it can’t always be avoided since things are said in the moment of sheer progress or Diva yells his name as he’s trying to crawl, or the fundraising sites ask for the beneficiaries name. I do not want to promote an air of deception thinking that our family is pocketing any donations made to Superman. It’s not the case at all.
And yes, we are doing fundraisers, to raise money for treatments that are not covered by insurance. I am in no way attempting to pocket money, and it would NEVER be used to pay our rent, buy clothes, and etc etc the other things. I will NEVER ask someone to buy my children toys, and some of the other crazy things I have read. I am a mom, my son was planned – I didn’t plan for this but who does right? We are capable of providing the things that our kids need. I would NEVER ask someone online to send my children gifts. I have posted our PO BOX on our blog and Facebook page – if someone wanted to send them cards or draw them pictures, if you have a child that is a sibling that wants to write Diva a letter – awesome – she loves mail! But I think sending toys is a bit extreme, especially since Superman doesn’t really play with a whole lot of toys and TRUST ME Diva doesn’t need anymore toys! I am still trying to get her to remember to clean up the ones she has! (see we are very real people!)
What we do: I started this blog as a reach out to other parents who are searching for something to hold on to, who have just received a diagnosis, who just had a baby born much too early, who fight the same fight we do. I do A LOT of research about our various conditions and I thought why hoard all of that information for myself. I have found great support and ideas from other parents online so I should share what I know as well. Plus I will take any chance I get to brag about my little man who wasn’t supposed to live more than a week! Look at him now!!
Conditions I have/plan to talk about on the blog and offer resources for:
Cerebral Palsy – we have hypotonic CP and when his tone does kick in it have triplegia tendencies.
IVH – Intraventricular Hemmorhage is a fancy term for babies that is pretty similar to what someone who has a massive stroke goes through – the bleeding in the brain.
HIE – Hypoxic Ischemic Encephalopathy – caused by a lack of O2
Addison’s Disease – something we have had for a while that I didn’t know had a name – we just called it Adrenal Crisis – treated with Cortisol Replacement Therapy
Temperature control issues
CVI – Cortical Vision Impairment
Infantile Spasms – Epilepsy
There are more but that’s just a preview – I need more time in my day.
I am a writer, researcher, and mom. My house is a disaster area, my desk is stacked with medical paperwork, my floor is covered with Barbies and therapy toys, I have laundry and a laundry list that goes on for miles. I sit around waiting in doctor’s offices writing blog posts in my head. I assure you I am very real. My family is very real. Having a baby at 27 weeks is very real, and traumatic, and having a special needs kiddo while miraculous is not something I take lightly. I appreciate the love and support we have gotten from our page, but even if not a single person read what I wrote but a mom that was struggling with her new reality, that would be enough for me. If someone can take with them something from my writings that makes their outlook a little brighter, their day a little easier or a technique that just makes things click then that would be enough. Of course I want the whole world to love my son as much as we do because he is truly special. I believe that God has a plan for him to touch someone’s life and I don’t know if it will be in the tangible world or here in cyberworld but I believe he is going to move mountains!
So please feel free to ask me anything! His medical information will not change, it might evolve as he does but there will not be drastic changes (like with some exaggerated pages) and we really have nothing to hide – within reason – I am not passing out my home address. You know there are crazy people out there, right?