On Friday when we received a very mean and judgemental comment on our blog from an anonymous person, I was hurt. No, I was crushed. This person decided to judge Jeff and I on our care for Nicholas (or lack thereof, in their words). As parents who love our child tremendously and who do anything and everything we can to be proactive about his care and his daily struggle with SMA, I felt like I had the wind knocked out of me when this person decided to tell me how horrible a parent I was because my son does not yet have a bi-pap. Do I think a bi-pap is important in the care of SMA? Certainly. Do I think Nicholas will need one eventually? Yes. It is something I think about often but his pulminologist does not think it is necessary for him at this time. Will he need it in a few months? Maybe, but I cannot make that decision on my own. I trust Nicholas's doctors. I fight when I feel it is right for him and push to get him things he needs, however, I also have to trust that his doctors are also doing what they think is right for him at this time, too.
So after reading this comment I felt dejected and deflated and started to realize how many people there are in the world who just want to hurt others. People who have been so hurt themselves that all they want is for others to experience the same pain. I started to question our decisions regarding Nicholas's care, I started to feel like maybe I wasn't doing all that I could for him. I started to think about all the unnamed people reading our blog and judging us from afar and I began to feel overwhelmed. As an optimist I tend to see only the good in the world and the good in others, but now all I could see was the bad, the mean, and the ugly.
My saving grace came Sunday evening when I found an online link to one of my favorite shows which I happened to miss on television while I was at a family dinner. Tonight's Dateline NBC was about a family down on their luck-a single mom with three children, two of which suffer from SMA-and a community who comes to help them in their time of need. After watching the video, my optimistic self began to emerge again. Not only are people good, but I think that for every rotten apple, there are hundreds of perfectly sweet ones. It makes me realize for that one awful comment, we have had hundreds of really postive ones. We are so loved and supported by countless family members, friends, SMA families, and people in our community. It made me realize that we are really, truly blessed.
Click the link below to take a look at how a small town came together to help one family: It's called Circle of Hands and it's an hour long program, but broken into smaller parts, so you can watch it all at once or in 10 minute sessions. Enjoy! http://news.mobile.msn.com/en-us/videos/detail.aspx?uuid=31ed788e-57a6-4758-ae49-605f8faf7fd2
8 comments:
Jess, I am so sorry that someone would come into your world and judge like that. I don't care if someone has a child with SMA, it is different for everyone and as Nicholas' parents you are doing what is right for HIM, and there is no doubt you put him and his needs first!! You are Nicholas' biggest and greatest advocate and I have no doubt you stand up for what you feel he needs when he needs it, but you are right, you also have to trust the 'experts' until you strongly feel differently. You are an incredible Mom, even from 'far away' it is so, so obvious how much you love your little boy and how his needs are always met above all else. Continue doing what you are doing, you are doing what is right for your family and noone else has any right to judge that. I am so glad your optimistic, positive spirit was renewed and I hope that continues...there are so many of us touched by you and your story and I am so thankful you are still willing to share it with us! Love Em
I hope this helps: Through your blog I have learned so much about SMA and the children who suffer from it. Please, continue to educate others. I know my simple words cannot take the hurt away, but realize you are helping so many, and not just the families of other SMA patients.
You know that I've had a similarly hateful comment on my own blog, and I know that it was left by someone within the greater SMA family. It broke my heart. It took a while, but I no longer take it personally--that person had issues, lots of issues.
SMA is the bad guy here. Why can't all these misguided wackos realize this?
((hugs))
This hurts my heart that yours was hurt. I will never understand people like that. We have so much negative in our lives already -- why add more. I am glad your optimistic self is emerging. You are a wonderful mom and don't ever doubt it!
Jessica - it makes me so sad that anyone would question or negatively comment about your love and care for Nicholas. You are the best mother that boy could ever have - don't ever let anything question or deny that! Just as you and Jeff are so lucky to have Nicholas, he is equally lucky to have you! We love you so much! Remember, NOBODY knows better for your child than you guys do. :)
WOW my heart sank when I read your post about that hurtful person. I can't believe that someone would question your care for Nicolas. You are a wonderful mother, and you are facing an uphill battle, not sure what is on the other side of that hill, but you are taking it day by day. I know you do EVERYTHING in your power to make sure that Nicolas is getting the best care from his doctors, why do something that isn't necessary for him at the moment? You have to trust the experts and yourself. You should never question the care you are giving Nicolas. He is your heart and soul and anyone who knows you guys knows that is true and therefore you are doing everything in your power for him. How dare someone tell you, you aren't doing the right thing....how do they know? Are they living YOUR life? No they are not. If they are someone without a child with SMA then they really don't know and if they are a parent to a child with SMA then yes the know some of the challenges you are facing but not every child is the same so what is right or worked for them doesn't mean it is right or works for Nicolas! Just know there are SO many people who admire you as a mother and love you and your family. I know I don't know you very well but Jessica you have a place in my heart and I have the upmost respect for you and Jeff.
~Sarah Collins
My dearest Daughter in Law,
I don't share often enough but let me tell you now. You are loved so dearly. I have gained so much faith from you and I know that wears off to everyone you touch.
Nicholas is a very special child to have been given, from God, to both of you. I beleive there is no one in this world that could love him more or care for him better than you both. You keep your faith and love no matter what
I wanted to catch up on some of your blog, I kept clicking on the button to leave a comment, and when it blocked the pop up I was too impatient to go there. I just had to keep reading. Every post shows what optimism and spirit you have. What a bright eyed boy and beautiful pictures taken by friends! Happy Birthday miss! I think about your family a lot. You guys live life up, and that is what matters.
Post a Comment