The sun was shining, snow melting, a sense of calmness and ease was is in the air.
Fast-forward 1 hour it’s now 8am I’ve been sitting in the McMaster above ground parking lot for 15 mins waiting for a spot to open up, finally you see a sunbeam glimmering down on that one person at the pay station, track their every move to their car ,and signal for that oh so important parking spot.
As the person pulls out, a youngster (early to mid 20’s I’m guessing) flies in to said spot jumps out and as he walks by my large enough to visibly see SUV proceeds to say “uh sorry I didn’t see you there.” Not the end of the world, it’s only a parking spot but when you’re trying to see your baby it was enough for this mamma to begin to tear up.
Needless to say ,shortly after another spot opened up and all was well with the universe again.
Up the stairs, past the nursing station, greeting our fav nurses along the way, I finally arrived to a very content little ladybug. Who might I add was watching treehouse – or staring in the general direction of the light and buzzing of the 1980’s grey t.v. dangling off that squeaky arm.
It was nearly 09:00 and I had about 1.5-2 hours until the team came to our room for rounds.
I had just finished sending off an email to update my company on LB’s status and my attendance or lack there of – when I got a new message.
Now I’ve been writing this blog for nearly 8 months and have always received such warm and positive feedback. However, as in life there is usually one person who won’t agree with things. As they are entitled too. I welcome feedback good or bad but this one actually hit a sour spot with me – I/the things I write are only trying to gain attention and sympathy from others. (Not a direct quote – this one has been rated pg for our sensitive viewers – but you get the gist)
So here I am after finally settling into my day at the hospital, starting to shake and become visibly upset over a comment that a meer acquaintance had made. I get that not everyone agrees with the blogging world or sharing your life online for everyone to read, but, this blog isn’t for them it’s for me. I started this blog as an outlet. An outlet for me to share our journey, and be able to openly talk about what our life is like from day-to-day. All with the hopes of reaching someone who might not know what it’s like spending days on end in the hospital pushing for the best care possible for your chronically ill child.
The attention seeking part I couldn’t agree more with. You’re damn right I want people’s attention! I want the attention because I want people to know about my daughter, and the fact that she has a rare disorder known as Congenital Disorders of Glycosylation – CDG. I want the attention in order to bring awareness to Canadians and the world that Canada is the only developed country without a rare disease policy in place. I want the attention to be able to help other families who are going through the same thing but don’t know what to do or who to turn to. So YES I want your attention!
Now “demanding sympathy” that was the part where I had to retract my claws, and remind myself that this person really doesn’t know me, and has never had to walk a single step in my shoes. Again, I knew that this could happen when I began writing in a public way, not everyone will agree with the things I say or the way in which I say them. BUT, for that one single itty bitty negative comment I have hundreds more that don’t see my writing as a ploy for your sympathy.
Believe me the last thing any mother of a child who is chronically ill, or has a rare disorder/disease wants is someone elses sympathy. Maybe some empathy from time to time, but I don’t want you feeling sorry for me. I don’t feel sorry for myself – sure it’s a tough life but I chose it and I wouldn’t change one single thing.
I love my daughter more than anything else in this universe, and let me tell you one bad seed isn’t going to stop me from continuing to keep your attention, and I truly hope that each and every one of you will be able to take away so many wonderful things from the journey of my little ladybug.
I encourage all of you to please leave a comment below. Whether you have had negative comments directed at you, or on a blog you may have written, I’d really like to open the lines of communication on Little Ladybug Hugs and hear your thoughts. Just scroll down to the bottom of this post and leave your comment.
Little Ladybug Hugs 
Hi All! I’m really looking forward to hearing your feedback on this post and from your personal experiences.
xoxo
Negative feedback is difficult. I think this post is beautiful and a wonderful reaction to the feedback. No one is going to silence you. You are too strong an advocate and too strong a mother. I am humbled by everything I read and honoured to know you and be educated by you.
I know only a little of what you are going through. I know what it is like when someone throws a negative comment your way and my dear you handled it with grace.
So many times people made stupid comments about my daughter and her behaviors ( pre diagnosis- my daughter has Asperger’s)that left me quivering. I have learned over the years when to let them slide and when to take a stand. As for blogging for attention, dang right do I want people to know what it is, etc like you do about your daughter’s so in a small way I can relate.
and by the way I think the company you work for is pretty great too.
Hi Hollie, thank you so much for saying that I handled this with grace. Believe me when I first received the comment there were a few other choice words I used, but in the end I wanted to be true to my real self.
I was an ABA/IBI therapist for years and have heard many stories from mothers in tears from comments people have made about their children. So I too can somewhat understand where you’re coming from.
Julie, You couldn’t be more right – I love that I am able to share our journey and be an advocate for my daughter and other children through social media. You’ve unleashed a new blogging monster and no one will silence me. Thank you for the kind words, and ongoing support.
Ugh, that makes me so mad Melissa! I cannot believe some people have enough guts to actually write something like that to a mother with a chronically ill child! As if you want your child sick, really now!
I was told so many times that other people needed to read Katelyn’s webpage so they could understand, some really wanted to know so they could understand how they could help the rest of our family that was back home dealing with the pain of not being able to see us and felt so useless, some were curious and that was ok too because like you, we wanted people to know about CDG. Our family had a hard time explaining the situation and the disease so they could send anyone the link to the webpage so they could read for themselves. A blog is a wonderful thing for so many people. Don’t let one negative comment hurt you in any way. Everyone has the option to read or not to read the blog and if they really feel that way, they should chose NOT to read it then.
I think another thing they don’t realize is whatever a mother of a chronically ill child feels, its usually felt for their own child, not for themselves.
Hope things are looking up for you 🙂 xoxo
Hi Dee, things are looking up. 🙂 The amazing feedback from everyone has beyond outweighed the crazy little comment.
Don’t let them get to you. Some people just can’t get through their day without trying their damndest to bring someone else down. Hugs to you and your ladybug.
Thank you Jen, I truly appreciate your support.
Bravo on a classy reply to a difficult situation. I can’t even begin to imagine what you and your bug go through daily and as such should keep my judgments to myself or better yet non-existent.
Sadly, I am not surprised. I have 3 young boys who are always sick with this or that. Nothing dangerous, just inconvenient and hard to witness. I have had people comment that we (our family) attracts illness and pain in to our lives, somehow placing blame for the strep throats and wicked coughs my boys get. I passed this off as insensitive since this person clearly had no idea how hard we work to keep ourselves healthy.
Your case is different though considering the magnitude of illness. No one asks for their child to be ill, especially chronically. No one wants to surrender their precious gem to the sterile environments of hospitals instead of a cozy room down the hall.
I admire your restraint. 🙂 Keep writing. We need to read it.
Ginger, thank you for the encouragement and kind words. Although our situations may slightly differ – when it comes to the love we have for our children we can all relate.
Liss….there are some very small-minded people in the world and unfortunately some of them choose to open their mouths. You are an inspiration to so many people, myself included, and that comment was wholly undeserved and NOT true. Keep your chin up and please don’t worry about what they said. I, for one, look forward to your updates and feel privileged to be allowed a small glimpse into your world.
I love you and am so proud of you. Keep writing Girl!
Love,
Krista xoxoxoxoxo
Kris, thank you so much a million times and more. Believe me I will keep writing. You and I have big dreams to follow, each post gets me one step closer to one of mine. xoxo
Take comfort in the fact that you will be able to gaze upon the image of your detractor on that wonderful site know as peopleofwalmart.com. She will be the one wearing mens y front waffle print longjohns and an “I ran into Tammy Fae at the mall” t-shirt while trying in vain to control her offspring.
You always know how to make me smile Edward! xoxo
Melissa, Thank you for writing this. You are absolutely right that sympathy is not what we as parents of critically ill or challenged children seek- it is “empathy” we want and NEED. We need understanding and encouragement to keep our lives moving forward in every possible way that is best for our children and our families as well as to keep our own emotional health strong. We don’t want to forget how to smile and if reaching out to others is what gives us a glimmer of hope and the strength to go on then we need to open that outlet. In your case, your blog helps you do that and I am glad you have your blog as an outlet. I also agree with you that raising awareness is so important and how thoughtful of you to think of others in doing so. I feel the same way. I know first hand what it is like to have an undiagnosed child- a child who is ill with multiple disabilities and severe challenges no one can explain why or tell you whether or not future children might be born the same way. I know all too well the desperation for answers and I often think that if I could help spare just one family from the pain of not knowing what is happening to their child by telling my story in an effort to raise awareness it would make it worth it. In your experience, Ladybug is rare and one day her information will hopefully help others in the future. Please keep writing!
LaRae you are most certainly welcome. I was actually debating as to whether or not it’s worth a blog about it. I’m so happy I decided to write it. Thank you for your ongoing support.
Keep telling her story and advocating for her and many others!
Thank you Richelle – I’m her only voice and will never stop advocating for her.
Melissa….your blog is beautiful. I look forward to reading your blogs every month. We’re all reading it, Sandy, Jean, me. We all love you and your beautiful little lady bug and we can’t wait to hear all about your ups and downs and every day life. You are educating us, making us laugh and cry with you….This blog is important to you and to us.
You have all of my love and support. I am thankful to your blog so that I can walk with you on your journey, so thank you for putting your feelings, thoughts and comments out there. You are extremely brave an amazing mom and all over just fantastic. Don’t stop writing!!!
Love, Steph xoxoxo
Thank you Steph, I love writing them and sharing with everyone the ups and downs in ladybugs world. 🙂 xoxo
Melissa, please keep writing the blog. I wish we could be closer to you and offer real support, but at least with the blog we can feel connected to you and aware of how you are all doing. I miss my little niece very much and Claire would just love to play with her. We especially enjoy the photos you post. She clearly has such a great enthusiasm for life.
Also, I enjoyed seeing my brother’s post. He can always make me laugh, too.
Janevieve, I can’t wait to see all of you again so Claire can finally play with her little cousin. Glad you like the photos, she has such and amazing energy about her.
Melissa
I agree with all the rest. Please keep on writing. I appreciate your openness and willingness to share your struggles with us. I love rejoicing with you in the good times and praying for you through the hard times. A person like that is not worth a second thought. You are an amazing woman and Mother.
Love ya Kris
Thank you Kris. I truly appreciate your prayers and encouragement.