Our sweet Elijah is "all fixed" (for a few years at least) and it is the best feeling in the world. Over seven weeks have passed since surgery and our baby has more energy and spunk than ever before. It is wonderful, amazing, indescribable, relieving... Most of the time I still don't believe it's true.
I thought I'd be able to let out a big sigh after this was all finished and happily pick up where we left off. And I have let out a big sigh, a huge one, but....where did we leave off again? The last time my life was anywhere near normal was just after Dan and I got married over two years ago. That was before Elijah was in the picture, so we can't pick up from there. Ever since Elijah was as big as a pea things have been anything but normal and some sort of whirlwind has been circling through our lives. Now I'm finding that I have to figure out what this new normal(ish) post-surgery life is all about and I don't quite know how to do that.
I feel like I have just come back from the war and I'm trying to cope with the aftermath. I've been having a lot of dreams where Elijah's lips are blue or his sats are at 30% again or he is back in the hospital and the nurses are unable to wake him up. Obviously the time surrounding surgery has affected me deeply because the scary parts are still lingering. There was this weird breathing thing Elijah did right before surgery where, with every breath, I could hear six quivers. Three quivers on the inhale and three on the exhale. It wasn't fun to listen to because it was physical proof that he was struggling to breathe. Lately I keep imagining that I can hear those quivers again. They aren't really there, but I worry that they could be. Then I convince myself that maaaaybe I just heard one, so I listen closely and realize I'm delusional.
On a deeper level I am unable to get the bad things out of my mind and on a more conscious level, I can't seem to comprehend what it's like not to have stress, anxiety, fear and/or panic attacks as a part of my everyday life. I am constantly feeling these conflicting emotions and I feel so out of balance because of it all. I am hoping the next couple of months will bring some clarity and that the more time I can put between then and now, the better off we'll all be.
12 comments:
It will get a little better...it takes a really long time, but it does get there. I am under the impression that it will never go away fully...if it does, it has not hit me yet, and we are approaching 2 years post surgery...I just want you to know that I am here for you if you need me. I am giving you lots and lots of big hugs right now...you are an amazing woman!
Lots of love!
Samantha
I can really relate to your last post. Now that my boys are perfectly healthy, I find myself crying more than ever. I pretty much cry any time that I talk about them and what they went through. I think it is just something about letting yourself relax a bit. It just feels so strange because you have not been able to do that for so long. You keep wondering when the floor is going to drop out from underneath you again.
It DOES get better. Little, by little, each day. Elijah is just going to take off now that he has the energy to do so, and soon you will look back and not believe how far you all have come. We are so happy to hear how well you little man is doing. He is such a superstar. We cannot wait to see him again!!
Oh Megan, I'm sorry you're having a hard time. I don't have any magic answers for you...I so wish I did. It sounds like you're right and you need to discover your "new normal". I have faith you will do that...it will just take some time. I'll be praying extra hard for you!
Sending you big hugs!
Love,
Cindy
It takes time...but it will get a little better. I won't lie, cause I still live with the anxiety on a daily basis. If you feel its that bad than I recommend talking to your doctor. You might benefit from medication. I know, I know...no one likes to hear that word, but sometimes it is what you need to help get yourself back together. I have been down that road before so I am hear if you want to talk. I am dealing with my own issues with anxiety right now so I can completely relate. If you ever want to talk just give me a call. If you don't already have my number let me know and I'll give it to you.
And one more thing...remember your only human, and you've been through SO much that its hard to get used to this new 'normal'. Take some time for yourself and if it helps get involved with a local support group, if you have one. I know starting Mended Little Hearts of Tucson is helping me tremendously with my daily life.
Hugs,
Vanessa
Ugh... I know... Evan is 3.8 yrs. post-op but... we've had lots of scans and caths. in between and constantly worry about his P.A. and the surgery it will bring. I struggle with this anxiety and have even gone to therapy, taken meds at a time... they didn't help - Dr. thought I was overriding the meds by focusing on the what-if's. It is hard, like you said this has been our life and really still is since both our boys require more in the future. Sending you a hug and letting you know your not alone.
It seems as though there's a general consesus that this IS normal! LOL I think that as a mom of a heart healthy child that I had some of the same feelings, but not nearly as much. Now with everything that Vaeh has been through, I'm kind of in the same place - what is normal? With Vaeh having a cath coming in the near future per the post-op report, I still have something to focus on. I just try each morning to look at my beautiful girls & thank God for all of the blessings He has given me!
Please know that I'm here if you need me! You made me an offer to call anytime (day or night) if I needed to talk before Vaeh's latest surgery. Now I'm extending the same offer to you! Please call me anytime, even if just to chat & say Hi! (419)738-3468. So many people have helped & supported me that I'd love to return the favor! Know that you're in my prayers! Give that cutie-patootie a big hug & smooch from us! Take care & let me know if you need anything!
Big Hugs!
Tina:0)
I can totally relate to your post...
I feel the same way....
I feel like we suffer from some sort of post traumatic stress disorder sometimes....
I still struggle....
but...
I did start taking some anti anxiety medicines (my OB/GYN strongly suggested I try it for a six months)...
after a month of trying it...
my only wish...
I WISH I HAD STARTED THESE 3 YEARS AGO!
Mike was very very very much against... but he see's now that it has helped me to cope....
Oh.... my female OB has tried for three years to get me to take some meds .. but I have refused b/c I was ashamed of taking meds...
but..... my life was being affected by my constant worrying and stress...
the way I feel now, is much more normal...
I think those feelings are never too far away when you're a heart mom. We are 20 months out from surgery, and there are some outfits of Bilal's that just hang in the closet; I won't dress him in those because their color makes his lips loook blue, and reminds me too much of how he looked before suregery. Every time he cries and holds his breath his lips turn blue, and I find myself catching my own breath. His scar still hurts me, although he is oblivious to it. It's just learned behavior, and it will get better with time. The best thing you can do is express how you feel, your friends in cyberspace are a great sounding board. All I know is that it does take time. That anxiety tends to come back for a while with every follow-up appointment. Eventually the nightmares will stop. Enjoy your baby boy, he is a miracle and a blessing! Hugs!
I think those feelings are never too far away when you're a heart mom. We are 20 months out from surgery, and there are some outfits of Bilal's that just hang in the closet; I won't dress him in those because their color makes his lips loook blue, and reminds me too much of how he looked before suregery. Every time he cries and holds his breath his lips turn blue, and I find myself catching my own breath. His scar still hurts me, although he is oblivious to it. It's just learned behavior, and it will get better with time. The best thing you can do is express how you feel, your friends in cyberspace are a great sounding board. All I know is that it does take time. That anxiety tends to come back for a while with every follow-up appointment. Eventually the nightmares will stop. Enjoy your baby boy, he is a miracle and a blessing! Hugs!
I still think those feelings too - and I don't think that they are EVER going to go completely away. I am saying lots of prayers for peace for you!!
<3,
Jennifer
OH God that's so understandable my friend. I can only imagine that you run on adreneline when it's happening and can't stop and think about it b/c the fear would overtake you and then when it's all said and done and your baby's safe you must deal with a form of PTSD. ug. I've just been so impressed with you guys from the day I read your blog for the first time and still am. *****HUGS GIRLIE******
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