Day Six aka Wonderings of a Special Needs Momma

Here are some of the things I’m wondering. I’m not saying I expect anyone to have an answer, I’m just wondering.

I have a lot of days where I wonder WHAT, exactly are my goals for Charlie. I mean, I can focus really well on the small stuff, but I have no idea what the big picture is. Do I want him to have his own place, do I want him to go to college? Do I want him to walk? To have a job? Sometimes I wonder if what I’m doing is the right thing when I’m not exactly sure where I’m headed.

I wonder if I’ll ever have any mommy-friends. We have some really great friends who hang out with us and Charlie and it’s fun, but I wonder if people who have regular children would be uncomfortable around Charlie.

And sometimes, late at night, I wonder this:

I wonder if I made the right decision for Charlie. In the very beginning, I wanted to support Charlie and his life because I thought that it meant I was supporting him. I wanted to take him home with me and love him. Now, as he gets older, and he faces so many challenges, I wonder if I was selfish.

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  1. First of all, if you are going to dream for this boy, dream big! A house, college…he can do it all. Second of all, you will find mommy-friends…I wish I lived in your area cuz I would be your friend…you rock! Thirdly, you are not selfish…every mother wants their child regardless of their limitations. You are giving Charlie the best he can get and he will grow up to be a wonderful man because of it. Teaching him young to deal with any limitations is the best thing you can do…and that is exactly what you are doing. You have courage so that Charlie can have courage.

  2. All of these are such hard, and common, thoughts of a special needs mom.

    My solution: Live in the day. I mean, it is nice to look at the big picture once in awhile, to get a little perspective, but there is no sense in worrying about 10 years down the line. It will be a different word then, different therapies, different adaptive equipment, all of it. The world will not be the same (for better or worse, hopefully for better) when our boys are teenagers or beyond.

    And your middle of the night question. I can kind of relate to that, kind of not. You see, when Fletcher was in the NICU, before the MRI, he had no clinical indication of the brain damage. No head bleeds, clean head ultrasounds, etc. So, no one even brought up the option of pallitive care. I don’t know this for a fact, but I am pretty sure his damage is as severe as if he had two grade IV bleeds, in which case the docs may have mentioned, or even advised, the discontinuation of support. I am 99% certain I would have decided to continue support, but I will never know for sure what case would have been made by the docs and what would have ultimately happened. And, I thank God that He made that decision for me.

  3. Bird, is there something in the air? I literally just posted a blog wondering about Max hanging out with normally-developing kids last night. That is always on my mind.

    Like you, I have endless thoughts about Max’s future. They crop up here and there, and EVERY single time I see a disabled person. I think, is that what the future holds for Max? There is a home for disabled adults in our neighborhood, one night Dave and I were at the coffee shop and a group of them came in. For an hour, I spied on them, ducking my head down occasionally because tears were spilling down my face. On the one hand, it was great that they were enjoying themselves and all had each other. And then, on the depressing other hand, I thought about Max being one of them and it killed me.
    I have found that the best way to deal is just what Erin said: live day to day. I try to focus on short-term goals for Max (e.g., get him to learn to say just one more new word) and celebrate his small achievements, and I just don’t let myself dwell too much on the future. Because our kids are still open books, who knows what they will be like, we can’t predict. What good does it do them if we end up drowning in worry?

  4. Aw, man…

    I know what you mean. It’s a little exhausting, no? The work, the parenting, and then the worrying? Oy.

    Charlie is lucky to have such a mama as you. Your creative genius will open doors and windows for him that other people wouldn’t even think to look for.

    And about those teeny tiny changes? No such thing. They’re all huge and they all deserve some sort of party.


    Yay, Charlie!!!

  5. None of us knows where we are headed… We plan, God laughs…special kids are a special blessing that God only gives to those of us he knows will be able to take the journey… that’s all life is with any child… a journey, their journey with parent(s) as a guide.

  6. blairspage says:

    You are NOT a selfish Mother! If you were selfish you wouldn’t be doing all of this to help him! If I didn’t live 10 hours from you I would TOTALLY be your friend! You are awesome and it shouldn’t matter that you have a special needs child.

    Anyway… you know what’s best for your child and you are doing your best by giving him the treatment he needs! Don’t feel upset because you didn’t give up on him! Feel proud that you fought for him!

    Big Hugs – Tiffany

  7. I think you are the opposite of selfish, I think your decisions were 100% selfless.

    When Noah’s first CAT scan showed severe brain swelling they could not see his ventricles, they were assuming he was missing parts of his brain. I was beside myself thinking about MY life, not his. I was thinking of what that would mean for ME. That was selfish…it’s those thoughts that truly haunt me today.

    Your doing the best you can, and a damn good job!

  8. Small Town Girl says:

    It probably was a tiny bit selfish, but you did what was best for you, your family and your child. You support Charlie every day and you’ll continue to do so because you are such a great person and a great mother. Of COURSE you didn’t want to let go of him!! You never will. I think you just want Charlie to be the best Charlie he can. And he’ll be that with your help.

  9. I’m sure it’s normal to have those thoughts every once in awhile. I like how Sarah said “help Charlie be the best Charlie he can be”! There’s no way really right now for you to know what that is so you just have to do all you can (which you totally are!)

  10. Gina (Mannyed) says:

    no way can your decision to love Charlie be selfish. You’ve been the exact opposite of selfish since the day he was born.

  11. Christine says:

    While there is usually some selfishness in all our decisions, a choice for life is always the right choice. Charlie has already touched many people, and he will continue to do so. He is so cute and his smile is contagious. Yes there are challenges. Every child brings challenges. His are just a bit more obvious. You are a great advocate for Charlie, and God would not have given him to you if He did not have the utmost confidence in you and your DH.

    Be Blessed!

  12. Justinich Family says:

    I found your blog from Melanie’s,my friend and I were just having a conversation about how we have mostly friends with special needs kids and probably because mom with typical kids do not always get it, not that we do not want friends with typical kids but our lives are just so different that it is hard for them to understand.
    I also think about what the future will hold for my son who has a brain malformation and CP and has some cognitive delays. I take the plan for the worst so you won’t be dissapointed stance. So I hope that he will be able to live in a group home setting and if he can live independently then that will be even better. All I know is how he is right now but things can change and therefore my plan will change for him. He does not talk and will use signing and an augmentive device, I hope that he has some words and can talk to his family but use signs and the device for others who may not be able to understand him as much. I just think that things will only get better as far as technology goes. I honestly hope that he surpasses all my expectations.

  13. White Hot Magik says:

    Okay even though I am late to the discussion, you know I havet to comment. I thought I was your mommy friend.; ) I do think I know what you mean, another mom you can just hang with and the kiddos. I hope you do find that, for the record it is hard even if you have “normal” kids whatever that is. Second, dream big, go large or go home as they say.