Understanding a diagnosis…is really a small small part of life with a special needs child…when I received the diagnosis that our baby girl was going to be born with Trisomy 21…I thought that was it…then the excessive doctor visits began and they began to tell us common “defects”, common issues being born with an extra chromosome…I understood what they were saying and I understood the percentages and the risks involved with having a child with Down Syndrome…but then reality hits…and the baby is born…there is no understanding…when Maddie had her first surgery at 4 hours old…I was stoned…and I liked that I was high…I liked that the drugs were not completely out of my body from her delivery…I could not feel, I could not think…I was not ready to…since then and many surgeries later I still wish I could get to the state of numbness…because I am head over heels in love with Maddie…and to see her in any amount of pain or discomfort makes me want to blow…on Monday I received the phone call that Maddie would have heart surgery….on Wednesday…I found my numbness…I found my robo-mom…and just did what I needed to do to prepare for her upcoming surgery…I was not happy, I was in the moment…I was scared…no amount of comfort can take away the feeling of complete loss of control I feel when Maddie has surgery…so off we went to Denver for her 2nd surgery in a month…this time for her heart…so I am told to be comforted by the fact it was orthroscopic heart surgery...ok I am not…I am the mother of a child that is having heart surgery…it is very hard to sit in silence with that running through your head….and it really is not that comforting…it is still heart surgery…it is still anesthesia…and there is still risk…she surprised us and had TWO 8 mm holes in her heart…it was the reason for her fatigue, stunted growth and excessive sweating…and here I am fumbling on how to mentally survive Maddie…I am not sure there is a “right” way…I am not sure there is a graceful way…I am numb…and I am scared that this is our “normal” surgeries…hospitals…nurses knowing us by name…xray personal remembering our faces…and seeing our specialist of doctors in the waiting room coming over to see if everything is ok…then the news I was not expecting…during heart surgery a camera was put down her esophagus…she is stricturing again…we will have another surgery in the upcoming months…robo-mom will come back and numbness will probably not lift…I am scared of being Maddie’s mom…not because of her being born with Down Syndrome…I am scared of her health issues that has come with the extras….that no one can understand or explain to you before you have a child like Maddie...I love her so much it hurts and I can not protect her…I cannot stop this angry esophagus…I am spent emotionally…I am relieved I can begin to check her heart issues off the list…but the mind set I have to have to survive motherhood...is something I am struggling with…how do I stay calm…how do I stay grounded…how do I stay out of the health drama…how do I stay positive and strong…how do I survive the complete loss of control…I guess time will tell…
Friday, August 12, 2011
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Oh dear. I'm so sorry this is so hard right now. Watching your beloved baby go through so much is heart-wrenching. Little Maddie and you will be in my thoughts and prayers.
ReplyDeleteI really hope Maddie feels better after the holes were closed. Her energy should definitely increase. I don't care what anyone tells you, all surgery is tough. It is tough on the child and tough on the parents. Sending hugs you!
ReplyDeleteYou have every right to be scared! I simply can't imagine what it must be like to watch you sweet little girl endure surgery after surgery. You are strong and Maddie is stronger...her stubborn side is there for a reason...she'll get through this and so will you!
ReplyDeleteBIG HUGS!!!!
Surgery, and having our babies in pain, sucks. It doesn't matter than we've done it before. Hugs to you and to Maddie. I'm guessing you are home?? If not, we'll be in Denver on Monday and would love to see you.
ReplyDeleteI cant even imagine what you are feeling! It hurts to know you and Maddie are going through so much. Sending you a hug and one for Madds too...Hope everything goes well and Maddie recovers quickly! Thinking of you guys.
ReplyDeleteIt never gets easier, the surgeries, the worry. It's because you love Maddie so much. I hope that Maddie is recovering well and that her surgery will make a big difference. Hugs to both you and Maddie.
ReplyDeleteHugs, sweetie! I cannot imagine being told on Monday that heart surgery is happening two days later! That kind of drama isn't good for anyone.
ReplyDeleteOk, so they didn't know before the surgery that she had TWO holes? Isn't that something they should've seen on an echo? Ugh.
You and Maddie are tough cookies. You will be fine!
I get what you mean, it has been harsh for me to realise that all those components the heart, tummy, eyes, ears, thyroid blah blah blah are not things I can tick off and forget about, they are in a revolving door and come round again and again. And that revolving door - its been spinning way to fast. And I know sometimes you just gotta do what needs to be done and don't think about it more than that
ReplyDeleteits okay to operate in that mode. Looking forward to your update with a fiesty Mads with a fully operational ticker ! (pun intended) love to you guys - Viv
I am sending a ton of love your way. Why God gives certain of us more challenges than others is one thing that is really hard for me to understand...but in those challenges come growth and perspective that will make your overall life that much richer...much better. I do believe that. So know I am praying for you and your family.
ReplyDeleteHugs!
ReplyDeleteIts like what we say when people ask us how we do it. Because what other choice do we have? Jax was given to us, so unless we give him up, we have to deal with the issues. Although Jax is almost 6, I still go through fazes where I feel sorry for myself. I don't want to hear other people's problems with their kids, they never seem to be as big as ours. I think it will always be a work in progress, even as the kids get older!
ReplyDeleteOh, I so get what you mean. Some days it all seems so overwhelming and you try to stay positive and you go on auto-pilot and in the end, it WILL be ok...it just seems like the worry will never end. I love how you are so honest with yourself and others. That seems to be a great coping mechanism and I am absolutely awed by your strength. Big, huge hugs to you and Maddie!
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