* A special needs mommy once told me that the grieving process does not go at one time… she said that it comes in cycles. I would have to agree with her. This weekend was tough for me. I haven’t had a tough day, or a series of tough days, for that matter in a long time. This weekend made me second guess myself…. Perhaps I am not cut out to do this.
* A friend had a baby this weekend. A perfect baby girl. When we visited you could really see the joy in her eyes, that happy embracing feeling of finally meeting your little one. Though I do share her joy, I found myself jealous, and bitter, and angry (if it happened to me, why didn’t it happen to you?). And to realize this made me hate myself. This is not the version of me that I thought I would turn into. I started feeling pity for myself and I felt really weak, and I second guessed the “strength” in me, and it almost felt like I had ran out and that I was going to finally lose it. Or maybe I already have…. see, I’m second guessing even my current state of sanity.
* I once asked a friend how long it took him to accept that he has a child with special needs. He said that around 6 months after the diagnosis, he found himself at a better place. I thought I was doing really great, I have been proactive, I have kept up with appointments, I am keeping myself informed, I am frequently communicating with the specialists working with Isabella, and we’re always on a look out for more resources that we can tap into, more services that can be provided for her... but this weekend brought a whirlwind of sorts… I had to second guess my progress… maybe I’m wrong to assume (and rush myself) that I’d feel better soon.
* My mom also mentioned something about “karma”. (When will this “karma” talk ever stop!!!) It pains me that even the suggestion of “karma” popped into her head, because that implies that I may have done something really terrible to deserve this. Something sooo bad that all the good things I have done did not off set the really horrible things I did enough to have been granted a child with special needs. Like having a child with special needs is some sort of punishment. It is much more painful that with that mere suggestion she probably have missed the fact that what my mom was equating with “punishment” is her very own grand daughter. But somewhere there, I did second guess if perhaps I was a tremendously horrendous person and that maybe somewhere there I do deserve this.
* My husband reminded me of the conversation we had with the genetics doctors back in December, that the mutation could have happened anytime at around my 16th week of pregnancy. They couldn’t really know for sure… but I caught myself back tracking on the dates and flipping through my calendar wondering what I was doing around the 16th week of my pregnancy… and although literature supports that de novo deletions are spontaneous mutations, I second guessed myself. Perhaps I could have done something to have caused the mutation, that maybe I did this to my baby. Not that the “cause” really matters at this point… I guess somewhere there I just needed to have something to blame it on, thinking that if I do, it might be easier for me. But even with that, I’m second guessing if it would really make it less of a challenge. “Not knowing” is just soooo difficult.
* I was also planning on going on a road trip to Utah at the end of July. The plan was to go attend the WHS conference. When I browsed through pictures of WHS children of different ages, I found myself crying over the pictures that I saw. Not because it made me sad, but because the possibility of how severe my Isabella could be terrifies me. It still does. And as much as I’m trying my best to resist the urge to give in to the fear, it almost feels like that’s the only option I have left. And if I do, what happens next? Now I’m second guessing attending the conference. It feels that participating could either make me or break me. I don’t know. I don’t know. I don’t know. I’m soooo confused.
* Ever since Isabella’s G tube placement surgery, we were able to take her more outside with us, not because I was ashamed of her, don’t get me wrong, but because now it is easier to bring her because there is no dangling nose tube to carry her with. Several random strangers would approach us every time, ooooo-innng and aahhh-ing at Isabella and telling us how cute she is. I felt shame for myself, because I would look at her and I would still see the syndrome. Whenever the strangers ogle at her, all I’m thinking in my head is that at any second they are going to comment on her spaced eyes, her low set ears, her philtrum, the glabella, the prominent forehead, etc. Then I found myself second guessing that maybe somewhere there my daughter is “beautiful”…. that “beautiful”. I feel so small to even admit this and write it here. Shame on me…. Shame on me… tsk, tsk, tsk.
* Even if I have found myself telling myself that I have “accepted” my daughter… this weekend made me second guess my progress towards “acceptance”… it almost felt like there was this very thin and vague (maybe even ambiguous) line between HOPE and DENIAL. I am not sure which is which of which I am feeling at a given moment. Does accepting mean that I feel happy? Sometimes it seems useless to even attempt hoping. But then again, I wouldn’t have anything to grab onto to help me to keep on going. HOPING, though seemingly futile, is my only hope.
* I am second guessing on posting this post for fear of judgment.
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6 comments:
Praying for you, my friend. You were meant to be Isay's Mama and you will get your confidence back. Maybe tomorrow!! :)
Until then, you can always email or call... and know that I will be praying.
Love ya.
First of all, you should never fear posting anything on your own blog. I think all of your feelings are so valid and this is a good place to get the support you need in times like this. Having rough days or weekends are going to happen, none of us can avoid it. But we also cannot beat ourselves up over it. We are human and may never understand why things happen other than to show off the miracles God has done. It's a difficult thing to accept at times, but it gets easier each day. After having met 6 other kids with WHS, my faith, pride, and hope for Riley is overwhelming. I found it so helpful to have the connection with other parents who are experiencing the same ups and downs. It gave me hope to see how amazing each of these kids are. I know great things are in store for Riley. Riley and I will be in Utah. We hope to see you there.
Madonna,
I feel so incredibly connected to you. When I read your blog posts, I feel as though we are moving through the ups and downs of our children's diagnosis and its impact in the same cycle. My latest blog post was the result of a similar sense of setbacks in my emotional state regarding Kaylee. The trigger? The birth of a good friend's baby girl. I haven't met her baby yet, but I had the same feelings of jealousy, anger, resentment, and yes-- shameful to admit-- the same feelings of why didn't this happen to you?
I feel as though I do accept Kaylee's condition, but it doesn't make it easier; and like you, I often find myself struggling to see her 'beauty' on the days when all I see is her syndrome. Lately, that has been all I see, and I feel ashamed to admit it. You make a very good point about the thin line between acceptance and denial, too. There are days that I forget-- but then reality comes crashing back on me.
I also intended to go to Utah but have since reconsidered...for the exact reasons you mentioned. The friends I have made and the moms I am closest to online give me hope and happiness; their babies are doing so much more than the "research" said was possible...but when I go to the listserve and/or WHS forums and see some of the pictures of the children and their state as they get older, I confess to being scared for Kaylee's future. I am a planner, and this "one day at a time" approach just doesn't work for me.
I feel as though you are my soul sister in this journey-- your thoughts and your words seem to echo mine, and I pray for Isay every night that I pray for Kaylee-- that they redefine the syndrome by beating ALL of the odds. Somehow, they will change the world.
You have my heart and lots of love & hugs!
Laurie xo
I am so glad you posted this. No judgment! But I do hope you will reconsider going to the conference in July. I am planning on going with my husband and son. We've never met anyone else with WHS - so it might be difficult initially, but I really believe we will leave at the end of the weekend feeling much encouraged and strengthened. I would love to meet you there.
The grieving process does go in stages, don't worry all of your feelings and emotions are normal. And don't even think that Isabella's diagnosis has anything to do with karma. It just happened, just like it did to us. We didn't do anything wrong, it was just a fluke. I also wanted to tell you that I have read and was told my the Geneticist that the deletion happened at conception, not around 16 weeks. Just with my labor & delivery nursing knowledge I know that a fetus' DNA are already prewritten at conception. A cleft lip and/or palate happens as early as 6-8 weeks gestation. So don't beat yourself up over what you were doing around 16weeks. You did nothing wrong. You will feel happy again. You won't be judged for having all these feelings. My very good friend delivered a healthy baby girl 2 months after Dylan was born. It took me a long time to go see her. It was very difficult for me to see a "typical" baby, let alone my friend's baby. I was angry too. You're going to get through this, if I made it anyone can. Hugs to you. :)
I have to agree that you should never feel like you can't write anything on your own personal blog!
I think everything you are feeling is perfectly normal. To able to acknowledge and write about the feelings and thoughts is healthy. Believe it or not, it shows that you are actually doing very well!
If you can get to the conference, definitely go. All of our kids/adults with WHS are just beautiful and amazing. The parents? Well..I have described it on my blog before about it being like "coming home". It truly does feel like we now have a second family. It is scary at first. And I can remember thinking the same thing as you-about it either making me or breaking me. Turns out I should never have worried.
Lauren is right. Isay is with you for a reason. A special reason. Which you will find in time.
Great post!
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