Tuesday, November 16, 2010

Thankful That We Are Not Alone - Guest #11

Please welcome Angela....she may or may not remember me contacting me through a friend when her son Benjamin was born...but she was in my prayers for more years than she probably even knew...I have gotten to know her in actuality over the last few months...and she is a joy. Her blog is so much fun, please do check it out...and I am thrilled to introduce her to you:

"Tiffany asked me a couple of weeks ago to write a post for her blog. It's been awhile since I've blogged, so I figured it was a good motivator. I am rarely short of words, and I enjoy writing.

But this one has been rather difficult.

I have literally cleared my screen four times and started over.

I suppose it appropriate to be sitting here, trying to compose the words, stuck.

That's how I feel in my life right now: stuck.

I just deleted over a page of typing because it was a bunch of whining.

My middle son, Benjamin, has Down Syndrome. He is 2 and 1/2.

And I am still not okay with it. I struggle with it almost everyday.

I obviously love him very, very much. It is a fierce, protective love that is different than the love I feel for my other sons.

But the Down Syndrome thing is harder now than it was in the beginning. I know I am not alone, but I know that I am in the minority. Most parents are a lot more accepting this late in the "game". They have moved on past the shock and grief stages.

It still hits me like a slap in the face sometimes. And I can't escape it. My son has Down Syndrome. Down Syndrome. Down Syndrome.

Like a broken record that plays over and over in my head, it hits me in different ways almost every day.

When I see my four-year-old son playing in the yard by himself, talking up a storm to the air because his younger brothers are too young to play with him. Benjamin would be old enough to play with him if he didn't have Down Syndrome.

When I am spoon feeding two boys at each meal. Benjamin would be using his own spoon if he didn't have Down Syndrome.

When I watch with a knot in my stomach as my husband struggles hard to give Benjamin a breathing treatment as Benjamin cries and screams and flails. If Benjamin didn't have Down Syndrome, at 2.5, you would be able to explain to him what you are doing and he would understand

When I only take two boys to a kid's birthday party and leave one at my parents' house house. If Benjamin didn't have Down Syndrome, he would enjoy parties and theme parks and movies and swimming pools at his age. He wouldn't still be so much of a baby.

When my friends' children and my own nephew who are all younger than Benjamin can talk and communicate with their parents and their siblings. Ouch. Still waiting for our first words, and we only have two or three signs. There's very little communication.

I realize how most of you will take this: That I'm ungrateful and that I need to realize that it could be worse. (It could.) That Benjamin is a precious gift. (He is.) That this was not an accident. (IT wasn't.)

I'm just struggling. Please don't judge me. Please don't tell me (even in your mind) that I need to get over it already. Just accept me for who I am, where I am.

A mom who loves her son very much but who is human and confused and disappointed.

I'm just stuck."


  1. There is nothing wrong with grieving. Everyone handles everything in different ways.
    This is something I have thought a lot about. If I were to be told that my child was going to have a child with Down Syndrome, I would never abort. I would love that child, and cherish that child, just as I would any child.
    But could I do it? Could I raise a child with down syndrome without feeling trapped? Without feeling resentment? Without feeling guilty, or angry, or depressed? And I don't know that the answer is 'Yes, I could.' I think it is probably one of those things where I would never know until I'm in that situation.
    But I know it would be so hard.
    I know you love, Benjamin. It is evident in everything you do. I know he is wonderful and perfect, as God knit him to be. I know this was supposed to happen. Benjamin was supposed to be yours, because of all you can give him in the way of love and support.
    There are no limitations on grief. At least there shouldn't be, and there should be no judgment toward you. As you stated, you're human. Sometimes I think of you as super-human, but you're still human. And no one can tell you how you're supposed to feel in these situations. Everyone tolerates everything differently.
    I love how open you are with all this. You put your emotions right on your sleeve. And it's so raw and powerful that it takes my breath away.
    I would never want you to pretend to feel like everything is just peachy.
    You are uniquely you, and that's what draws me to you. You just lay it all on the line. I love you! Chin up. We all feel stuck sometimes. Everyone does. It will get better. I'm certain of that.
    God will not make a mountain that you can't climb.

  2. Wow! Thank you Thank you Thank you! My favorite post yet! Thank you for being so honest. I am convinced that grief (at least for the really big disappointments in life) is cyclical. And 100% acceptance might not come this side of Heaven. I have noticed that many people, especially Christians, will let you grieve for a bit and then it's like, "get over it, move on, and be thankful for what you have". I hate that because it is just never that simple and as a result many people hide their struggles because they fear the judgement of others and don't want to come across as whining. As if feeling 'stuck' isn't bad enough, I hate that we also feel guilty for feeling 'stuck'.

    Thank you Angela for being so honest and bold. I did not perceive your post the way you feared. I do not see you as ungrateful. I see you as normal and amazing for being so brave to tell the truth!

  3. Beautiful post, Angela!

  4. No judgement from me at all. Some days I have problems and others, my problems have me, or at least they seem to have all my attention. I like to think that is normal even if my situation at the time isn't.
    Everyone knows you love your son; no one expects you to love the difficulties.

  5. What I've always loved about Angela is she's honest in the most beautiful way. The world needs more Angelas.

    And Jennifer's comment is so right on. No matter what the struggle, the world's reaction is often "get over it." And the heart just isn't always able to do that.


  6. I also have a 2 1/2 year old son with Down syndrome and our experiences could not be more different. But that doesn't make one right and one wrong. Each family has their own journey and should never be judged. Thank you for sharing your thoughts.

  7. The editorial piggy-back post to this one: