Story one:
Friday night we went to have ice cream for dinner because it was my last day of work. Ice cream for dinner has been a thing since I was little that has always been reserved for really bad days or for celebrations. I am now allergic to milk so it is rare that I eat ice cream (I get swelling in my ear from it) but sometimes for something really special I eat ice cream for dinner. We are really trying to crack down on our budget to save up to go to Disney World so for us right now going out for ice cream is a huge treat.
It was nice out so Brent and I got our ice cream and went to sit outside. There is one little table and two chairs on the sidewalk in front of the ice cream store. Jilli was in her umbrella stroller and we pulled her up to the table too. Jillian is use to sitting in her high chair or a stroller while Brent and I eat so it is normal for her to either just sit or to play while we eat. We were enjoying a little family time.
Two women walked past us, the first one got about 5 feet behind Jillian's stroller, stopped, turned to the woman next to her and said in that tone "Did you see THAT kid?" It was a Friday night around 7pm, there were not many families outside at this point, I knew what kid we she was talking about. The other lady then said "and those things on her face!" Jillian has two stickers each day that hold on her oxygen. She is very proud of her stickers and even though with her hair band she does not really need the stickers, they make her happy. They continued to stand there... 5 feet from my child and talk about her for the next several minutes. I sat in shock. Brent caught that something was going on and after they left he asked if it was our kid they were talking about. My heart broke between anger, frustrating, and pity for these woman. No, I'm not talking about children, or teenagers, I am talking about woman older then I am. I was blown away by their audacity. I kept trying to convince myself that they could not really have been talking like that about my kid, but I know they were, honestly I am almost glad they were whispering so I could not hear most of their words, but I got enough
I was not going to blog that story, until today happened, and it reminded me why it is so important to share awareness.
Story two:
Today I was looking through Facebook and a baby center post popped up on my news feed. It was titled "What happens when you don't abort a baby with a genetic condition?" I looked at some of the comments, hoping to find people talking about what a gift kiddos with genetic conditions are, because I can sure tell you mine is. We chose not to do any prenatal testing (other then ultrasounds) with Jillian because to us we always said we were happy with any baby we had. After struggling for over a year to get pregnant we were just happy to be pregnant. For Jillian none of that testing would have probably told us anything, and at first everyone thought she was a "normal" healthy baby (I'll rant sometime how I feel when people say "as long as the baby is healthy I'm happy") It took a while for us to realize the big picture, and here I sit two and a half years later with a little girl who gets 100% of her nutrition from a feeding tube and is on oxygen when she is going to be moving around. She has had 9 hospital admissions, 5 surgeries, weekly therapy, and over 100 appointments with medical professions. Not what you imagine from a baby with an APGAR score of 9.
So as I read the comments, some of them pro-life and some of them pro-choice, I stumbled upon a comment (I only read a few comments, probably less then 10) that stated along the lines of "I get being ok if a baby has something like downs or something, but it is different if a child has to be hooked up to stuff to live. If they need a feeding tube to eat and things to help them breath. That is no life." I have NEVER wanted to yell and cry so bad at the same time. No life to live!?
If you have met Jillian, or if you read my blog you will know very differently. She is happy as can be. People stop me and tell me that they have never seen a child so happy just to live life before. She makes random strangers smile. She had all of the cast member at the Disney store grinning today with how excited she was just to be in their store. She is an AMAZING little girl and I don't just say that because I am her mom, I have many other people that would stand behind me in that statement (and many people that join us each year in walking, running or raising money for Team Jilli and literally stand with us) My child has a life. My child has an amazing life. Different, yes, but in NO way less, so please don't discount her for her genetic condition, she is still very much a person with emotions and feelings, and I as her mom have them too!
I don't want to end this on a sad note though...
Story three:
After leaving the ice cream store, we felt raw with emotion and were not sure what to think. We needed to go grocery shopping and sometimes just wondering a store helps calms my emotions (Target has some magical quality about it) Since we needed meat we needed to go to Walmart (our Target does not have a fresh food area) and as we were walking through Walmart a store clerk stopped us to tell us what an amazing child we had and how we were so blessed to have such an awesome little girl. Not that the person at the ice cream store had changed our minds about how awesome Jillian is, but our hearts needed to hear the kind words of this stranger. We had never met her before, she did not know our story, but she was so sweet and so kind. We left Walmart with a very different feeling then when we went in. We left with smiles and our heads held high.
Our little girl is awesome... just like any other child... she is just different!
Please join us in raising awareness that just because someone needs medical help, does not make them less of a person. Jillian's feeding tube and oxygen help her to live to her full potential; they don't make her less of a person. Obviously if someone feels they can post something online for the world to see like that, then we still have some awareness to raise... will you help me?
 |
| Jillian showing off her tiger stickers at the zoo, with her oxygen head band on.... having a ton of fun! |
No comments:
Post a Comment