The other day I was asked if I had ever ‘grieved’ for Boo. I was completely taken aback by the question. Why would I grieve when my child lived? Of course, the person meant did I grieve the child I thought I would have (aka “perfection”).
The true answer would be, no I haven’t grieved. But not because I am a glutton for punishment or in denial, but because I accept—most of the time anyway—Boo for who she is. My sister-in-law thought that maybe I had so much trouble over the holidays because I hadn’t grieved. What she didn’t realize was that I never blamed Boo for my feelings. Nor was I upset that I couldn’t buy my 4-year old appropriate gifts and instead went with therapy based ones.
My problem was that I was feeling guilty and (I admit) kind of overwhelmed, depressed, and feeling that I suck at being her mom because of my own shortcomings. Not because of Boo’s. Yes, I struggle when I see typical 4-year olds. But that is not about grief. It is about wanting my child not to have to work so hard.
What I tried to explain to my SIL was that if Allie didn’t get into Harvard (hey, a mom can dream) I am going to be upset because she worked so hard to get into the school (again, a mom can wish). With Boo, I get upset because she works so hard to achieve things that are normal milestones for other kids. And at her birthday or the holidays I feel bad for Boo that she doesn’t get the magic like other children her age.
Most days, I am able to put Boo into perspective. Whenever I get too into the self-pity mode, I only have to look into the waiting room of any therapy or doctor’s office. There is always a child who struggles are more intense. Which that Catholic guilt in me makes me feel guilt that I actually think: thank God that isn’t my child. Come on be honest, I am not the only one! And I am sure some parent looks at Boo and has the same feeling.
Although they probably don’t admit it for the world to judge!
I am not sure what the grieving process is, or if I am in the midst of one and just don’t know it. I do know that it is exactly what makes Boo a ‘special’ child that I love the most about her. While I wish her struggle wasn’t so difficult, I know it is exactly her determination that makes her the girl that we know and love.
So I don’t believe that I have grieved. And I do not think I want to. I would rather rejoice that Boo is Boo.
(Un)Diagnosed and still okay 
I love your attitude. Friends of ours take the same attitude with their 20-something year old daughter who has Down Syndrome. When asked if they could make Kelli normal if they had the chance, they reply that Kelli would not be Kelli if she were normal. To say they have struggled would be an understatement, but Kelli is perfect just the say she is … as is Boo. It does not make daily life any easier, I am sure, but that's what I think. 🙂
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Thanks for understanding my point on this and for stopping by!
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Kerri….
Thank-you for commenting on my Blog!! I truly appreciated it!! ;-D
Your feelings which you have expressed are very normal. It is easy to compare Boo with other “typical” children her age. 😉
And here's the thing. When I wrote that Boo is Beautifully Unique, I meant it. Wholeheartedly!! ;-D
–Hugs–
–Raelyn
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Hi Kerri,
No, I do not think I have ever really grieved. And I am glad that I always accepted Sunny the way he is. It makes life so much easier! I blogged about something similar here: http://icansaymama.blogspot.com/2012/11/why-me-well-why-not.html
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Amen!
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I wrote this a while ago, while I was still in denial that my son's only problem was a speech delay…http://www.findingninee.com/our-grass-is-green/
I have to say that I guess I actually have grieved a little bit. I've been sad over losing the son I thought I gave birth to and how the son I have is nothing like him. That's not to say that I don't fiercely love my baby boy and that if had I a chance to clone him, just as he is, that I'd not hesitate because I wouldn't. I love love love him, just as he is. But I have grieved. I'm a first time mom, and was 40 when I had my little heart. I worry about him once I'm gone, so ya, it makes me sad that he might not have “people” once I'm gone…and for that, I grieve.
With that said, I love your attitude. I love you blog, and I think Boo is perfect, just the way she is. (As is my son Tucker…he's perfect as he is). Maybe it's just because I'm so old. But I did grieve a little for the three year old I thought would be talking to me by now.
Although I guess we're in different camps when it comes to this, I hope you know how much I adore following Boo's progress and your thoughts….
<#
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I remember days of crying when Smiley was 3 or 4 and I just felt such a failure, that I hadn't found the right therapy to help her. Now she is 16 I just enjoy her for who she is and it is my feelings about my son with aspergers that I struggle with. They are similar, but because it is 'autism' his difficulties become more pronounced as he gets older which I find heart breaking xx
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I'm one of those older moms too. I think for me I love that we can be in two camps but understand that our how we deal was our journey. And we are here to support one another! I also, in some ways, have two worlds because I have Allie my “typical” child who makes us see Boo, the best little sister and thinks special needs is just the way to be
PS Tucker is adorable
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And you have it harder because your beautiful girl lulled you into thinking everything was threat before the shoe dropped!
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Thanks I love that you see the beauty before you see the unique 🙂
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I think because I concentrate on the now it makemakes it easier to accept
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I think there are little heart brakes along the way. And we, as patents, are allowed to bruise not shatter.
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I would be surprised if someone asked me if I had grieved ~I think that is a very personal question. But I guess it depends on who asked me.
I have grieved and been through the grief cycle. It helped me to heal and grow as a person. We all have different ways to handle and cope with all the things we are handed in this life. We grieve (or not) on our own time frame.
~ Jamie
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Hi friend, I found your blog through Love That Max. We have a sweet boy, Baker, who was born with DS. There was not, nor has there been grief, but there have been fears and worry.
Praying for you and thankful for your boldness!
http://bakerisourdreamcometrue.blogspot.com
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