As SUBMITTED By Their MOM ~~NaomiI've been sitting here trying to think about HOW I feel or WHAT I feel...and trying to come up with the right words for it...I feel I have been dealt an unfair deck...I feel selfish that I think I have been dealt that unfair deck, when in fact, my children got the raw end of the deal...I feel like I'm slowly drifting back to the days of that horrible anger I had 6 years ago...I FEEL ALONE...there are very few people in this world who can understand the feelings I'm having (that's a good thing)...but yet, way too many people do indeed know what these feelings are...more than I wished ever knew...and unfortunately, there are people out there who have been through worse than I. Six years ago on the 27th of February, Thomas, my 7 year old, went through open heart surgery, for a condition called Tetrology of Fallot (TOF)...I went 8 months before that cursing the Lord and blaming God for doing this to my child. Yelling and cussing at the Lord for punishing my child for my mistakes. And then, that day of surgery came, and I asked for forgiveness and asked Him to protect and watch over Thomas for me...and He did. Thomas came through the surgery with flying colors...there were some bumpy roads along the way...like him going through drug withdrawls from all the medications he was on and incompetent people scaring me so much that I almost passed out...but Thomas made it through it all and so did I. Two years later, we had to watch Thomas get cut from the other side as he had back surgery to repair his congenital scoliosis, which without it, my spunky 7 year old would most likely be paralyzed and in a wheel chair today...instead...he plays baseball and runs around like a crazy little boy...AMAZING...Thomas has a slit on his chest and on his back and is the most caring, PERFECT, little boy a mother could ever ask for...and an amazing big brother. To this day, I know that Thomas is the reason I was brought to the Lord. Thomas is the reason that I changed my ways and walked away from certain people and certain situations and lots of stupidity...Thomas saved me, in turn brought me to the Lord. And everyday I hold onto it...and lately, it's the only thing that's been getting me through this last year or 2 years. Almost two years ago, we found out that our third son was also going to be a Congenital Heart Defect (CHD) baby. After going through everything with Thomas, and then having Samuel, who was perfect and healthy and a brat at times, but the love of our lives, we never imagined we would have another baby who would have to go through open heart surgery. And to top it off, it was more life threatening than Thomas'.
Who would have ever thought there was something more serious than what Thomas had to endure? When I was 6 1/2 months pregnant I had to go on bed rest due to Jonathan being way under the size he should have been and a cardiac baby. Not only was I taken from the place that let me forget about everything to come, my work, but I had to sit around and feel completely helpless and have so much time to think and ponder about what was to come and what could happen. It was agonizing! Then the day came when Jonathan was born, and I literally got to see him for 30 seconds before he was taken away to the NICU. A team of doctors and nurses flooded my room an hour later and gave me the details...he was going into surgery in one hour for a minor procedure on his heart that would help him live for a couple weeks 'till surgery, the next day would have esophogus surgery, as his esophogus and stomach were not attached (what more?) and a couple weeks later we found out that he had to be flown to Los Angeles from Las Vegas, where we were living, because his condition was so severe, the surgeon didn't feel he should stay in Las Vegas...THANKS SO VERY MUCH FOR THE NEWS...Needless to say, Jonathan did amazing (that's an understatement...there are no words to describe how strong this little boy was)...my family and friends came together and prayed and took care of Thomas and Samuel for us, so we could be there for Jonathan...EVERYONE, WE OWE SO MUCH TO FOR GETTING US THROUGH THOSE 2 MONTHS...and since then, it's been wonderful and amazing and I wouldn't change it for the world...I always knew Jonathan would have to have surgery again someday...we were hoping for 3-5 years. In February he had a procedure (I keep calling it a procedure, because it doesn't sound as bad as surgery, but yeah, it was pretty much surgery)...the procedure came back with half good news and half bad news. I knew in my heart that Jonathan was going to have another open heart surgery for the last 2 weeks, but I was holding onto a miracle...but I guess that miracle didn't come soon enough...because on April 27th, Jonathan went through his second open heart surgery. I thought the news wouldn't hurt as much, as I've been expecting it, but I guess I was in denial at the same time.
IT SUCKS! There was nothing I could say as a pep talk to myself...I knew in my heart that Jonathan would do fine and be home soon afterwards...but...IT SUCKS...It's not fair that my baby had to go through this yet again, so soon...he was 11 months old and was yet again going to be taken away for a week...yeah, I know, a week isn't that long, compared to the lifetime to come; that's what I'm holding onto...but..IT SUCKS! But the only thing that matters, is he did spectacular...He's doing awesome now and started walking at 14 months old...This "unfair deck" can be taken away at any time though...I seriously am begging for it to...I want to be able to go on with my children and their lives and be left alone...but I know that will never happen. I know the rest of my life I will worry...because it's something, as a parent of a CHD baby, we have to be ready for. We will never have that normal life that so many of our friends and family have had or will have...we, as a CHD parent, will forever and for always have that little green envy monster popping it's head out when someone has the perfect pregnancy or perfect baby...we, as a CHD parent, will always hold our breath for our friends and family during their pregnancy, as if it's our own child, and cry and rejoice when that beautiful baby is born healthy and whole and perfect...we, as a CHD parent, have had our lives changed forever. We go on with our lives everyday, trying to fit in and not let it change us, but it's too late, it has.
I am a CHD mommy...I will have my outburst...I will have my moments where I break down in tears, for no apparent reason...I will love my children and hold onto them tighter than anyone can imagine...I will devote my life to my children and for my children, like tomorrow may be my last...I am a CHD mommy. Someday, down the road, I can only hope for a decade of no surgeries or less worries and great reports...but for now, I hold onto that day that I get a smile or a hug from all of my boys...my CHD boys and my little brat of a boy (which they all can be, but I LOVE IT)...My children are my life, and no one can say anything else to me to make me feel bad because I don't want to go somewhere and I want to stay home with my babies, even if I have been with them all day. I will not let a certain someone (who supposedly cares for my family) bring me down and ask me, what if they die...fyi, that's the stupidest thing to say to a CHD parent or any parent for that matter, use some common sense...because everyday, I have to understand the risks of all the surgeries, procedures, and life in general...I know the risks far too well and have said good-bye to far too many angels...but I know more than anything that I do have the Lord, MY GOD, holding onto me, holding onto my children, and holding onto those doctors delicate hands as they operate on my baby and my friends' babies. I just pray for strength, strength of my baby, strength of myself, and strength of the doctors and nurses to get us all through the days to come...I pray for healing, healing of my children and other children and healing of my and other parents delicate emotions, that I wish weren't so delicate...I pray for faith, faith in my God and faith in myself and faith in the surgeons, doctors and many nurses who have my baby and other babies in their care...I pray for God's grace and mercy. And thank you to everyone who's always been there for me, for us, with a simple, yet perfect prayer, for that kind gesture, a hug or a smile, or just that friendly word that you are thinking of us.
Thank you to everyone who's been there for us through everything...especially my family and friends who have taken my children and not let them experience the hurt their parents suffer and give them a day of fun in the sun while their sibling has a life saving operation...just...THANK YOU AND GOD BLESS
As SUBMITTED By Their MOM ~~Naomi
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