The great thing about having two little girls is that I am able to reuse Reagan's baby clothes for Lauren. The bad thing is that going through the boxes and getting those 6-9 month clothes out for Lauren breaks my heart all over again. The pain that hits me is breathtaking, the kind that makes me want to curl up in a fetal position and cry for days on end. It is close to the pain that I felt 7 months ago when the phone rang and the nurse told me the painful news that our daughter has Rett Syndrome.
It is silly to me because the feelings are those of loss; feelings of remembering someone that is no longer with me. But, that is not true. I can hear Reagan in the next room going "ba ba ba" over and over again so I know she is here and I should not be mourning. However, I am mourning the lost dreams all over again. I can vividly picture her in each of the cute outfits and those images remind me of our innocence and nativity. They were carefree days, not days full of therapy, fighting insurance companies, or stressing over her future.
Abby's first visit to Boston for the IGF-1 Trial
10 years ago
While reading this post, I just sobbed. I hate that you have to go through all of this pain. I hate that I never know what to say to you, or if I should say anything at all. I usually try to send encouraging e-mails and comments, but the truth is, I think Rett Syndrome sucks and I hate that my dear friend and her family is being SO affected by it. I love you and think you are absolutely amazing. Lauren and Reagan are so lucky to have you as "Mommy" and I am so lucky to have you as "friend". Much Love!
ReplyDeleteThank you Amy for all of your support! I know this post is really a downer. I wrote it and then saved it to post later. I almost didn't post it though because I hate being so negative. But, I want this blog to reflect the reality of our life, not all rainbows and puppy dogs.
ReplyDeleteDawn, I can't imagine what it is like to have Lauren so close to entering this crazy club. When Chloe was around 7 months, I felt like she was pushing everything that I hate about Rett right in front of my face. She walked, she fed herself and it made me really face what had been stolen from Claire. It wasn't fun, but I feel now and love them both so much more through the tears. xx
ReplyDeleteYou are so not alone! I often think about the years when things were carefree and I didn't worry so much. I have a homemade ornament of Riley's handprint that I made when she was 8 months old, before we had any clue that something was wrong. When I get it out at Christmas I go through those feelings of loss all over again, even though she is right here. It's getting better though, maybe my feelings of loss are being replaced by hope?
ReplyDeleteAll of you Rett Mommy's are so strong and supportive. I am so glad that Dawn has all of you to lean on! And Dawn, I am glad you are 100% honest in your blog entries...and I am sure it is a kind of therapy for you too! You know I am always here for you!Hugs!
ReplyDeleteIt doesn't take much to take me back to those days before Abby's diagnosis. I agree with Erin that it has gotten a little better over time. Things that caused a complete meltdown last year are easier this year. I hope your spirits are lifted today. Thanks for sharing!
ReplyDeleteUnfortunately, there will always be "triggers" that just send us back to a time where the tears a flowing. Remember that it is OK that you do that...we are human! (Of course we are expected to tackle unhuman tasks for sure!) Know that you are LOVED so much by so many! Hugs to you!
ReplyDeleteKelly
Dawn, I totally agree with everyone---it does get easier! Those feelings of what Avery cant do are almost daily replaced by feelings of what she can do! I still have my moments---and just want to stomp my feet and scream but in the end Avery is perfect just the way she is and am so proud to call her mine!
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