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 me...lol. 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.