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Thursday, August 11, 2011

Can I?

I think it has taken me a good few months after finding out Carter's diagnosis, to really feel the emotions.  I'm good at pushing things down or away so I can deal with the moment.  But lately, I've been a lot more emotional:  sad, angry and impatient.  I keep coming back to saying "It's not fair."  I know some optimist out there will say, "Nothing in life is fair."  Bite  It's not fair that my little Carter won't have a normal life, that he won't be able to move on his own for a long time, who knows when.  That he has troubles eating and drinking, that he can't talk to me, maybe ever....that he won't be able to have friends, because he will be behind.  That he'll never be in a "normal" class, date, have a first kiss, go to Prom, go on an LDS mission, and ultimately get married and have children of his own.  I know this won't be a lighthearted post, but I feel that people should know just how hard it is.  Most days I can deal with things okay, because Carter is such a good baby...for the most part.  It's thinking ahead that terrifies me and makes me sad.

I know he is a special spirit, and his spot in Heaven is guaranteed.  I have a celestial being in my home, and I'm honored.  But I don't think I can do this, deal with all the emotions and knowing what he is missing out on.  I want more than anything to see my baby boy, 20 months now, to walk and be able to get his own toys.  To be able to hold my hand and walk beside me, to feed himself, to go to Nursery, to make friends, and to say "Mommy" or "daddy".  I'm not saying that I am limiting him in any way, because I know a lot is possible.  But the statistics, and reading other blogs, has prepared me for the future.  I will always have a baby, or at least a child that is emotionally far behind his real age.  I will have to keep doing therapy, even when I'm tired of it.  I will have to feed him, dress him, bathe him, bring him toys, entertain him, and carry him everywhere...for a long time.

I know Carter didn't ask for this, and it isn't fair to him above anyone else.  I try to do my best, to make him feel loved, wanted and well.  But when he is in bed, I feel defeated and so scared.  I know there are worse things out there, but I need to recognize that what I am going through is very hard, and I deserve to have a pity party now or then, to cry or get angry.  I know people don't understand because they don't have a child like this, but it is so tiring.  Not just because he doesn't sleep through the night most the time, but because I'm always berating myself for something I didn't get to that day, that could have helped him.  I feel like no matter how much therapy I do with him, that he'll take such a long time to progress.  It is frustrating.  I know I could do better, but sometimes just feeding him and making sure he is well, is enough.  I fortunately have a very supportive and caring husband, and parents.  I am blessed with a few special and close friends, but ones I don't see often. 

I know when you have a baby, you are already giving up a lot.  But I didn't know I signed up for this.  My dad believes Carter chose me before this life, and I don't know if that's true.  Trust me, after all that I have written, I love him with all my heart.  If I didn't, I wouldn't care like I do.  But some days I need to yell out "I've had enough!"  It may not be just because of today, but a long series of events.  I don't know if scriptures, quotes or inspiration will cheer me up right now.  I just need whoever is reading to know how hard this is..not for a pat on the back, but just to know.  I am a perfectionist, so when everyday doesn't go just right I get really frustrated with myself as a mother.  I know eventually some things will improve, but more will be added.  This is my little tantrum, thank you for reading.


  1. Hey, just wanted to chime in here and let you know that all the feelings you mentioned here are typical of coming to grips with the diagnosis. People who haven't been through it can never know how difficult it really is. Don't feel guilty for feeling the way you are. Time is really the only thing that will help it pass. Take it one day at a time as best you can. Some days are better than others. ;-) Lean on Mel and me whenever you need.

    Oh, and by the way, I know doctors and therapists won't tell you this, but I'd bet you Carter will be totally capable of all of those self-care and communication things you list off above. It'll take longer, but he'll get there! It just makes his first steps and saying "mom" all the more rewarding.

  2. I think your dad's right, Carter did choose you. You are always upbeat, positive, researching to understand and do better.....Carter is blessed to have you. Of course it won't be easy, nothing in life ever is!!! Each of us has our specific challenges, tailored just for us so that we can have the opportunity of growth and excellence. Ever since I have known you, I have thought you were special Heather. I can see why Carter chose you.

  3. i think right now it would be best for you to have an outlet to go to. Some kind of a therapist that will help you sort out your thoughts and feelings. Someone who specializes in talking to Moms with children of these kind of disorders..i think it would make you feel a whole lot better :)

  4. Hi Heather. I might be on the other side of the Atlantic from you guys but I think I was in the same place as yourself emotionally the other day. Uisneach had gone to bed and I got to thinking, probably too much thinking! I felt a sudden urge to throw a cup accross the room. I didn't do it but the surge of frustration really took me by surprise because recently for the most part I've been in a good place emotionally. The next day Uisneach finally managed to fit some blocks into his shape sorter that he's had for a year. I literally jumped for joy! Life with 1p36 is a rollercoaster but just like yourself I wouldn't swap my little boy for the world! Best wishes to you all miriam

  5. Thanks Miriam and Nate for understanding:) It sure makes a huge difference. And thank you everyone else for keeping involved in Carter's life.

  6. It's been a while since you wrote this post, but I just wanted to add my tid-bits. :)

    You're absolutely right to let yourself feel those emotions. It's only when we let ourselves fully feel and understand what's in our hearts that we can be liberated through the Savior.

    It's liberating to let yourself fully feel the emotions of life, isn't it? I also am good at keeping my emotions at bay until later... but I usually forget to let them out at all until they're spilling out everywhere. I am so grateful that, once we've entrusted our whole hearts to God that He can take away the pain of experiences so all we're left with is pure experience full of love and learning.

    Good luck facing each day... and when you feel like crying or screaming, do! I'm certain that Carter already knows how you're feeling--whether you physically show him or not... might as well show it! Please keep sharing your experiences and insights--I'm looking forward to learning more! (and I'll try to limit MY insights... lol)

  7. Cecily you are so sweet, your post was a nice surprise! Thank you for giving me permission to rant and rave hehe:) I appreciate the comments they are nice to hear.