Friday, April 26, 2013

Heavy hearts.

Today I my head has been all over the place. Thoughts that I just cant seem to get away from, that have slowly been creeping up on me for a week or so.

I look at my beautiful boy and I am so thankful for him being here. For his beautiful face. I hold him close, his smell like a drug to me that I just cant get enough of. For months my boy laid in a hospital bed, surrounded by machines helping to keep him alive. Wires hooked to and inside him. Constant beeping became our normal and silence became scary.

I go to his cardiology appointments and I wash my hands before pushing a med through his feeding tube. The smell of the soap flashes me straight back to that hospital room, with all the machines, all the fear.

Its been happening more frequently, a smell, a look he gives. I get brought back to those moments that my boy was so frail, and it reminds me that even though he is doing so well right now, that he has been at a weak point and could easily be there again. Reminds me that one day he will have to have another major surgery (if not more), and in the future, a heart transplant. I think to myself "how could I go on without this little being". I think of my other children, 5 and 4 years old, and all of the memories made with them. All of the good night kisses, hugs, and "I love you". I cant imagine getting him to that age and losing him, after getting to know him so well. I cant imagine losing him RIGHT NOW.

While shopping today I seen a beautiful baby girl around the same age as Waylon, sitting up alone in the grocery cart playing with her mommies car keys. A wave of emotion hit me and I wanted to start crying in the middle of the store. Because my baby doesnt do that yet, and with his condition (even though hes doing well right now) he could be taken so quickly without a moments notice and never be able to.

Tonight two others fell victim to the cruel monster called CHD. One of which I kept up with through facebook. I enjoyed seeing his adorable little face pop up on my newsfeed every day as I scrolled down checking up on family and friends. Looking at him tonight I see my son. The chunky cheeks, the fingers in mouth, the "old soul" eyes.It hits home even more!

This cruel beast has robbed again. Taking memories made and parts of those who knew of them hearts. Families never to get a moment with their precious lil one again. Only favored blankies, pacifiers and pictures left to remember them. Family photos are never the same. A photo of the precious child held by family members symbolizing that they are never forgotten and will always have a place.

So I cherish my sons every moment of being with us. Holding him close to my heart, feeling the rise and fall of his chest and the fast beat of his heart. Smelling that certain smell he has, pressing my lips to his head feeling the warmth of his skin and the softness of his light brown hair. Seeing him smile at his daddy and listening as his brother and sister giggle at his new trick of sticking out his little tongue.

Our thoughts and hearts are with families who have lost. The children taken so soon have been looked at as our own, and have become family. They understand more than anyone day to day struggles with our childrens medical needs, the aggrivation of insurance companies, medical supplies, the hundreds of medications, the dirty looks, and the criticism from those who dont understand or agree with us choosing the fight for our children.

I will never feel that my husband and I's choice was wrong. We have given our son the chance that any person has deserved. I see a miracle every day before my eyes, and I am happy to call it MINE.

Friday, April 12, 2013

Acceptance and understanding, or lack there of.

For a few weeks I have rehearsed in my head just how I would word this post. I know that either way its going to affect people in different ways, wether it be mad, sad, who knows. But I have to write it, I have to have some closure from the words dancing around, from the overwhelming feeling that "it needs to be said".

I find myself so angry sometimes here lately. This whole situation is not what someone would ask upon their family. Who would want their child to struggle, to worry about the outcome of their childs life, worry how the things they went through as babies would effect them so greatly. Like, will the brain bleeds and seizures affect development, muscle usage, inteligence? Will he be taken far to early.....

Will he be taken early. This one really gets me. Whatever delays arise I can deal with, I will make it work. But that whisper of reality comes to me daily. And rightfully so with my childs anatomy and the fact that there isnt enough funding just yet for his condition.

Long ago I accepted his condition, it is what it is and there is nothing I could do or could HAVE done to change the outcome. We just have to be in this and take everything it throws at us so we can see this little face! When given our diognosis I first blamed myself as any parent would. I went over and over in my head what I could have done wrong to have made this happen. I have medical training, a college education. Aced anatomy and physiology 1 and 2. So I did just as I did in school and threw myself into research. Looking at outcomes for children born with HLHS, for the statistics, the complications that can arise, developmental delays, feeding issues, strokes, and so much more. But there was something I never expected through all of this. Acceptance and understanding from others.

No matter how much I researched and prepared myself, no one else (except my husband and others who have been this journey long before us) could understand this. I have fought so hard for my son to live, for the right decisions to be made from doctors, constantly working along side them to make sure that no stone was unturned on any diagnosis. I put the info up for everyone to learn, I have advocated to pregnant friends and family so they know the signs and what to ask. I have implemented strategic guidelines from the very beginning with my sons best interest at the top of the list. But people still dont understand it.

Its hard to understand the anatomy. How a simple cold can take Waylon down. I believe some think Im just being overprotective, overly cautious, blowing things out of proportion. Im here to tell you now, Im not. I have seen the devastation first hand that simple cold can bring. How everything can be going so fine and turn around just as quickly as you blink. I have set on the phone with a mom all day while her son was fading away, when just the day before she was holding him and there was so much hope.

I have been told I need to chill out, calm down. I say this... When you have walked 1/4 of the journey I have walked with my son to keep him alive,set by his side as he struggled to breath, while his chest laid open due to severe swelling, watched your 3 month old have a seizure, watched them try to cry out for you but they couldnt because they had a tube down their throat because otherwise they couldnt breath. Then maybe, just maybe you may have the right to tell me to "chill out". I know the precautions to take to keep him healthy. But even with the best efforts of this it still couldnt stop a harsh infection getting to him in the ICU, even when we had to scrub, gown up and glove up before we even entered our sons room. Precautions were always taken, and he still got a severe infection, one that left him lethargic and in a comatose state for 3 days, resulting in another brain bleed and being intubated again because the infection was so bad he couldnt breath on his own anymore. All while strict precautions were taken.

This is why I ask that people not come over if they are even sniffling because it can be more than allergies. To not come if they have been in contact with someone sick because most viruses take at least 3 days to show symptoms. And so much more, all to keep him safe.

I think people forget because he is doing so well right now. Because he is home, smiling, growing. So people forget quickly that he only has half of a heart, one that needs to last him the rest of his life, one that already has decreased function in the side that does work. If at anytime he were to get sick it would take away more function of his heart because it would be on overload due to the sickness. Or could give his heart an infection that could result in major complications, such as needing a transplant sooner or death. And FYI not all are candidates for heart transplants, and they hold their own mess to deal with.

Lets put it this way, if you were to buy a cheap battery that only had half the charge it needed (we all know how those dollar store batteries are lol), everytime you used it more of its charge is gone, it works less until no more. This is how waylons heart would react.

So yes, sometimes I may seem a lil anal about people coming around sick, with even the slightest of symptoms of something, because we never know what it could be. And I need to protect him the best I can. If people cant understand it they may have to stay away. I know it sounds harsh, but I have to do what I need to to keep him safe, and if other people arent going to be on board with me to keep him here on this earth than I cant take that chance. I need willing and loving people who want to make sure everything is in his best interest. I dont mean making him everyones main priority, but it doesnt take but a second to think "hey Im not feeling well, Im not going to go around for a few days until I know im feeling better", or "I was around someone sick today so Im going to hold off before going around just in case because those germs could get to him quicker and easier than a healthy person", "I went and seen lil Waylon today and now im not feeling so well, maybe I should give his mommy or daddy a call and give them the heads up just in case it is something".

I can no longer feel bad about hurting peoples feelings or making them mad if I know im doing what I need to to protect him. People dont realize that it doesnt just affect Waylons health, it also takes away from our family. If waylon were to get sick again I would have to go out of state again for his care, leaving behind my husband and other two kids again. So no I dont take things to lightly anymore. And Im not the same Tabitha that I use to be. I use to sit back, be quiet for longer. But I cant do that anymore, especially when it comes to my sons health/life. I am doing what I need to as a mother, and if another parent cant understand that....., well then I have no words for them. I have done what I need to to inform people about Waylons condition and the precautions needed to keep him healthy, it is their decision to listen and learn the info and my duty to implement it.

Help us keep Waylon happy and healthy. Take the precautions, make the call if you need to. We want this smile to last forever.