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On Sunday, I had one of my worse Pity-Party Kind of Days. I was so consumed with grief; I was so consumed with the guilt of feeling sad, when the NOW is so good, and I couldn’t get over the THEN. I voiced/typed my sadness and frustration, and you know what I got? I GOT THE MOST AMAZING SUPPORT EVER. My pity-party could have lasted all day long, but with all the amazing support from facebook friends, I got over my sulking in less than an hour. And the fact that I didn’t feel “alone” was so wonderful. Some replies I got were (I hope my heart friends don’t mind me posting, I did take names out):
■“oh girl…you are entitled to these “jealous” days….. believe me I have my fair share!!! Thanks for posting this bc sometimes I feel like I am the only one who feels this way, and nice to know its “ok” to have our weak moments. And yes,you are definitely blessed Smile and big heart hugs your way!”
■“I know exactly what you mean! but when i feel this way i am reminded that there are people who look at me and my kids, healthy or not, and feel a pang of longing bc they still waiting for their own. that quickly cures my emotions.” … “Naomi, and you other moms are allowed to feel all those things. never stuff your feelings! my Naomi has a year to in till her next surgery. what i said is just what helps me keep things in perspective when i get into a funk. bless you all!”
■“I feel the same way. I get jealous when I see babies drinking a bottle, Mav only did for three weeks and has a gtube, I get jealous when I see kids crawl, Mav can’t even roll. I get jealous when I hear people talk about going on vacation or just having fun, Mav is hooked to machines and its hard to even leave the house yet we are fighting to keep that house because of all this
But then I think about it and know that our kids are even more special because they fight a battle every day. It takes a specail kind of person to do what they do. And it takes a special mother to deal with it day in and day out. So just remember our children are beautiful and the best picture comes from them even if its in a hospital or with feeding tubes and IVs.”
■“Oh boy do I get this Naomi – my worst feelings happen when i see someone breastfeeding a little baby. Hannah was 6 weeks old when I was told I would kill her if I persisted with feeding orally. I will never forget that moment. I dont think it matters how many years pass or where we are at right now with our kids, those memories of their first year … of life are so powerful and will never leave us. Write them down here as you feel them, I know it helps to know I am not the only one who feels like this xxx”
■“Been there, done that, doing it again, I’m sure. No need to feel guilty, it just comes with the territory. I’m glad other people don’t understand what we do. I wouldn’t wish it on anybody.
We have frequent reminders (aka flashbacks), be it a cardiologist appt (tomorrow) or another one of his “fainting” spells a couple of weeks ago. (he’ll get mad, hold his breath, the eyes roll back and he goes “out”.) We’ll NEVER get used to those! All you can do is take it one day at a time. God bless.”
■“I REALLY get this and understand completely. What we are all talking about here isn’t Jealousy – it’s a form of PTSD. Not saying go get medication or anything like that… but what we have each been through is trauma… and yes, we will all have our “flashbacks”. For those of us with 2 CHD or 2 ill children, it’s like some strange combination of both “flashbacks” and “deja vu”. Usually combined with a weird “why me?”and sadness for the pain and trauma our children have to go through “why them?” Follow this quickly with a form of “survivor guilt”, because our children – surgeries and all – are still with us, and we have wonderful children, while some people do not and can not have them…
I struggle each day knowing that I may never have an answer. Hoping that the work I can do here will someday lead to answers for my children, or for their children. If I have 2 CHD children, what will my children and their children have? For my daughter with CHD and a prosthetic valve – what will this mean when she wants to have children?
not having answers for all those questions, but not being able to set those questions aside and make them go away!!
For each of us, the questions are there. And each of us will struggle with guilt and anger for having those feelings and daring to ask those questions, yet they don’t go away.
In my case, Faith in God helps, but it hasn’t taken away the questions. And each time there’s a new crisis, there’s new fear and new questions. And new prayers.
But don’t let those questions get you down, try to focus those questions into something that will affect the future of CHD warriors and families and research and answers. Let all the precious CHD Angels NOT get us down, but lead us forward! Those things keep me going… well that, and my kids screaming for food and toys and rides to games and movies, and oh, yeah… LIFE : P It keeps going, doesn’t it?
Yes, thank God for Facebook, because your daily people in your life may try to understand, but most of them cannot. Therefore, they don’t know what to offer you. We, as FB friends, offer great support and understanding, and sometimes the fact that we don’t have to face each other each day also gives us the chance to say yes, we understand, dump 3 paragraphs of our own feelings, and then tell each other to “buck up” and go cook Sunday Lunch, cause this is our life, such that it is… and remember, every body has their own trials and tribulations, and if all threw ours in one big pile, and inspected them thoroughly, we’d probably pick our own, same problems back up to take home with us… cause “the devil we know”…
I may not KNOW each one of you, but for being here and asking the questions, and answering when we can – and dumping here Because we can – I ♥ each one of you, and your precious CHD BABES…everyone of them and everyone of us, has a purpose, whether we ever understand it or not.”
■“I am so sorry you are having a “down” day. The key is to “not look back” but appreciate the blessings of the present. Although, I know that is very hard. This is so much harder on the families, especially parents, than it is on your children. There was a survey taken of adults with CHD that revealed they would not change a thing about their life, because it has made them appreciate their life on earth, rather than taking it for granted. It has made them to be the person they are. So…heart hugs from all of us that have been in your children’s shoes. And thank you for all you are doing to help you children live as normal a life as possible!! We all appreciate it very much! Heart hugs!”
HOW AMAZING ARE THESE PEOPLE AND OTHERS WHO ARE ALWAYS THERE FOR US, WHEN WE NEED THEM? I know we all have our days and have different feelings, because all of our experiences with CHD are different or have different outcomes, but it’s so nice to see so many people in the CHD community there for one another. I love all of my CHD friends. You all make me a strong and better mother. I pray everyday for our CHD family. I pray for less surgeries for CHDers; I pray for peace in our hearts; I pray for more awareness; I pray for more research; and most of all, I pray for more saved lives.
Again, thank you EVERYONE. Thank you Levi, for giving us as a CHD family somewhere to post our feelings and send out big ol’ Thank You’s. Thank you for everyone’s support. And lastly, Happy Birthday to my little CHD Warrior, Jonathan Anthony. You are turning 2 years old on Friday, and this is a BIG DEAL! You had a long hard road that first year, but you are such a strong little man. Someday you will realize how BIG OF A DEAL you are. Someday, you will realize that Thomas, your big brother, saved your life. Unfortunately, he had to go through open heart surgery to do it, but if it wasn’t for Thomas, we wouldn’t have pressed forward in having you tested. My family means the world to me, my husband, my 3 little munchkin men, and my CHD family. God Bless you all!!!
