I think I'm ready to start making sense of this. I think I'm ready to focus on healing. I think I'm ready to slowly peel this brave face away and explore the pain and grief. I think I can explore what caring for, loving, and one day losing a terminally ill daughter means. Or can I? Maybe this will never make sense to me. Maybe losing a daughter or son doesn't ever make sense.
I'm sure I will look back on this in years to come and my pain will make sense to me. Maybe it won't. I don't now.
A special request and plea for help from other Moms in a similar situations: How else do you do it? I am exhausted. I am grieving. I am lonely. I have a brave face, but I'm wondering if it's the best way to be?
Yes, Sometimes the brave face may need to be peeled away. You can't hold up forever, it is painful and scary and it's okay to admit it. Although I do not have a terminally ill child, I did, and sometimes still do, go through some scary medical issues with my child. He had a brain tumor removed when he was nine. It was rather large and left him with some disabilities that we hoped he would overcome. It's been a long 8 years and he did not completely recover. We live year to year praying the tumor does not recur, so far so good. I follow your blog and think you both are amazing parents. What has helped me is therapy. It took me 10 months to admit I needed it, but it's what helped and continues to do so. Because, let's face it, life has not been fair. I find that talking to someone totally removed from my personal life really helps. I can say whatever I want without ever feeling as if I'd be judged. Not that anyone would. I think you should make time for you in whatever way you can and if you can get counseling, get it. And finally, don't ever feel guilty about not feeling up to the challenges you're given everyday. We are only human, we are not supermoms, it's okay to feel gyped. You and your husband are top-notch parents and have risen to the challenge of caring for your special daughter and I commend you for it.
ReplyDeleteGreat post, Amy. Love you and always here for you xoxo
ReplyDeleteJulie
Amy you are an amazing mom and I agree with the anonymous poster, take time for yourself and don't feel guilty for it. I lost my brother when I was 16, you'll never forget her, it will change your life, and you become an even more amazing person. Gabrielle is teaching you something that only she can teach. Savour her wisdom and take it day by day, slow down the future and enjoy the now. Hugs to your family who are always in my thoughts.
ReplyDeleteThanks so much. This brave face is starting to slowly disappear and I find I'm having hard times with things that I wasn't having before - maybe I was in denial? I think counseling is my next step. I really appreciate and need these supportive comments. Thank you.
ReplyDeleteAmy... The brave face is the one I try to put on all too often. I am struggling to keep it there right now. I have been soo very blessed with 11 years so far with my daughter that has MPS 1, but I am so scared of what comes next. The fear seems more intense these days. I read a post by a mom that has a son with MPS 2 or Hunter Syndrome, and something about the way she describes the anticipation seemed to help me feel less alone. I watched the video that she posted along with it, but I only recommend watching that if you are in need of a really good cry...one that comes right from the soul. Sometimes, I need an excuse to have that really good cry, an excuse that is not about a pity party for my families situation but about empathy for another. ( although a pity party is not always bad either :) )
ReplyDeleteI dont know if any of that made sense... Just know that I can relate to feeling the need to put on the brave face most of the time.
http://www.savingcase.com/index.php/2012/05/11/anticipation-and-flying/
@ jennifer - thanks for your comment. I will watch the video when I'm in need of a good cry and have the fortitude to go 'there'. I'm pretty certain you know what I mean:)
ReplyDeleteFrom a mom in a very similar situation, if you ever want to have tea together....please let me know. Alison-Andrew's mom
ReplyDeleteYes, it is the best choice, and it is a choice. You choose to feel lucky that you brought this beautiful daughter into this world and eventually you will see her out of it. This is precious, there's no other way to see it. .... well maybe there is but it's not a happy place. Janet
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