Wednesday, December 31, 2014

My IG Vent


I originally wasn't going to post about this, as it involves me stooping to their level and acknowledging their comment, but I can't seem to shake it. Earlier today, I got a comment on one of my photos of Evanna on Instagram a few weeks back wearing a headband (of course), and this person had the audacity to accuse me of "using my sick child for advertisement". I promptly deleted their comment and blocked their account. I was hurt, and I'm sad to say that it even made me stop and think that maybe I was. I quickly shook that thought, and here is my public response to that:
Yes, I post + tag the IG shops that I purchase (and sometimes gifted) Evanna's headbands from. Why? To give credit where it is due (because some of these headband creaters are incredibly talented), AND avoid the 20 comments a day that I would probably receive asking where they're from. I know this would happen because I've had FB friends ask me multiple times where I get Evanna's headbands from, and on a DAILY basis, I'm writing down the information for the nurses that ask as well.

I guess my question to this lady is: would it be acceptable to "advertise" where these headbands are from if my child wasn't sick, and at home and healthy? Why am I not allowed to state where her headbands are from because she happens to be sick and in the hospital? Walk a mile in my shoes - would ya for a minute!? I spend EVERY POSSIBLE waking moment at my baby's bedside in a different city, miles away from home, away from my husband, family and friend, and I plan to continue to do so until we bring her home AND for every future hospital admission that she WILL have. My life has been put on hold for the past several months (not that I'm complaining) and we are living a daily nightmare.

This is the ONLY way for me to "dress" my baby girl and forget that for one moment that we are in a hospital hooked up to a million machines and the fact that my little girl is still intubated. I haven't held her in over a month in fear that it would cause her breathing tube to rub against her already fragile trachea, as I want her to be in the best possible condition to extubate successfully (and the fact that there just isn't a lot of room here in the squishy PICU).

Do you think I'm enjoying our situation? Don't think for one minute that I wouldn't trade all the headbands, recent followers, and attention for a boring and normal life at home with my baby girl. What I wouldn't trade to make this whole thing go away then having to watch on a daily basis my child be bagged, suctioned, blood transfusion after blood transfusion, daily dressing changes, hourly blood pressure checks, THREE MAJOR SURGERIES (with many more to come), countless bronchoscopy's that involve trips to the OR and be put under anaesthetics, risky Cath procedures, 2 MRI's, 3 CT's with contrast, DAILY chest xrays, 4 failed extubations, enough sedation medication that would put ME out on a DAILY basis (morphine and ativan around the clock, with constant ketamine, chlonidine and cholro to keep her comfortable), and 4x/day lab work (and I'm sure I'm missing so many other things).

So what if I get offers of headbands? These shop owners find my profile + blog, and are taken back by Evanna's story, and are using their talents and the only way they know how to, to show support for our little family (I have never once asked for free headbands - except to one person who was insistant that she help in some way, so I stated "send more headbands", as that was all I could think of). Does that make me a bad person? Absolutely not! Yes, I'm using this opportunity to share our story to educate and create awareness of CHD's {the #1 cause of birth defect related deaths}, inspire people, and maybe even get people to think and realize how lucky they truly are. I KNOW Evanna would be proud of me, and nothing short of that. I am her mother, so because of that, I am her advocate and mouth piece. How dare you accuse me otherwise. I know she would appreciate the length I go to, to remind and show everyone that she is just a little girl and see past all the tubes and wires that cover her body. I do my best to cover up with blankets the full picture and what she really looks like, because I just want people to view her as the cute baby that she truly is. I'm sorry she is sick, and that my picture of Evanna in a headband made you think otherwise. This has been the hardest 3 months of my entire life, and for you to try and "knock" me down further, only shows your true character. From what I can tell from your private IG profile, you are a troubled young lady who lives by herself and obviously many personal issues. You know nothing about my life, expect for what I have put out on social media, and displayed for the world to see. I would never wish this situation on my worst enemy and it pains me to know that every day we have with Evanna is truly a gift and miracle.

May you never know my pain or daily anguish of knowing that our time with our precious daughter could quite possibly be short in this temporal life. Your attempt to try and make me feel like a terrible parent has ultimately failed and if anything empowered me to think just the opposite.

Sincerely,
Kierra Irvine - Evanna's Mom
{AKA Mama Bear}

3 comments:

  1. I love your pictures and Evanna is beautiful in her headbands. Some people are so self righteous. Ignore them!

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  2. Mama Bear. YOU ROCK! Do not ever for one moment forget that you are a terrific mother. There is nothing harder then having a sick baby and being alone in a diffferent city, away from your husband and support line. I know, I have been there.
    Be proud and flaunt that gorgeous baby and if you want to pretty her up with headbands go for it. Let no one, friend or foe tell you you can't.
    Best wishes for a healthy happy New year and healing prayers for your sweet baby.
    another Momma Bear!

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  3. Hi, Kierra. I found your blog via Small Fry. I've been looking through it and familiarizing myself with your story a bit. First of all, I'm so sorry you are enduring such a difficult thing... having to know the first year of your daughter Evanna's life this way when it should be different... or could be different. I think it is wonderful that you blog about and for her, and also raise awareness about this condition. I had never even heard of it until coming upon your story, so it's an important thing to bring it to light. I had to stop and comment on this post because of the pain and hurt I saw and identified with. We lost a little girl six hours after she was born in December of 2013. When I was finally ready, I began to blog about her and what our lives were like, both while we were pregnant with her and knew we would lose her to Trisomy 18 {another chromosomal disorder that is almost always fatal}, and while we grieved and tried to carry on after losing her. Eventually, I got back on facebook so that I could tell everyone why I had been off and share the brief life of our daughter with them... pictures and memories and such. Most people were so kind and thoughtful. But I had people judge the fact that I was so open about her... almost celebratory, sometimes, about her life... as I should be. There will always be hurtful people who feel like it's their place to judge someone and shame them for something in a situation like yours or mine. It's as if it makes them feel better about themselves to elevate a silly matter like that above the real issue at hand... the hurt and pain and sadness involved in a family who has to endure such a difficult sickness or even loss of a baby... like you said, they can't even walk in your shoes long enough to realize that their comment would be ludicrous to even bring up. Cruel. Hard to imagine someone could be cruel at such a time. I'm sorry someone said that. I think you have every right to vent and you handled it well. Good for you blocking such negativity, ignorance and nitpicking. You don't need that. You need positive uplifting people in your sphere. Life is hard enough and will threaten to drag you down enough as it is. That is why people need to come along side and hold you up... not tear you down. I hope you'll never experience anything like that again. Some might try to tell you to ignore little comments like that. But to sensitive moms like us who have been through the wringer, those are not little comments. And the cut. I applaud you for carrying on as normal as possible. Yes!... by all means put a sweet headband/bow on your daughter's head and tell others where it came from? Why shouldn't you and I enjoy a sense of normalcy when it's what we want more than anything in the midst of such a time that is anything but normal? Anyway, I love your blog and the way you highlight other babies/families who have gone through or are facing what you are going through. I pray that your baby will continue to be strong and fight... and that you will too. Much love from another mom who has faced unutterable pain and heartache with the illness of a baby. May you continue to be strong and have a strong heart for yourself and your daughter.

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