Being realistic, pessimistic or just giving up?

The last couple of days have been tough. Really don’t know how to explain it or how to even write down the right words to how I’m feeling these days. I’ve said for the longest time that my life is like a rollercoaster but I think I just realized that I’m the rollercoaster. My mood can go from super happy to super depressed in 1 sec. Hate feeling like this.

 

Monday 16th July I attended a meeting at the hospital with my son’s doctor. We needed to clean the air & talk about what to do & what not do to. She asked my how I was feeling & I just answered the same as always; I’m doing fine, I just really want my son to be fine & find out what’s wrong with him. I only lied a little because OF COURSE I want to find out what’s wrong with my precious boy but I am anything but fine. I cry everyday & can’t sleep at night; I’m filled with worries & have nightmares. I have migraines several times a week. I’m just not in any balance at all.

She (the doctor) said the same thing as always; we don’t know what’s wrong with Tobias, we have no clue on what to do now, you might never get any diagnosis, maybe he will die a very young age & blah blah blah. I’ve heard it all before & of course it makes me sad every time but all the other times I gave myself comfort by saying; No my son will make it, he’s a fighter (& I know he is!!!) we will find a way, God is a good God & blah blah blah but this time I can’t shake it off me no matter how hard I try. Maybe all of the sudden it has occurred to me that maybe my son will never be well, I mean I love my boy as he is, he’s so cute, charming etc. But what if he will die from this? Gosh, never ever dared to ask myself this because it was NEVER an option but all of the sudden my heart is aching from this question; What if he doesn’t make it? I hate hate hate myself for even allowing this feeling, this thought to be stuck in my mind. I am the one who should fight for my son at any given time, I am NOT allowed to give up or sink into this old tune; what if?

I need to be strong for my son! The truth is, right now I’m anything but strong. I might sound like I could rule the world but no, need to be honest – I am breaking down. I need to change this mind of mine ASAP.

Two days ago my mom had spent the day with Tobias, she came home with him & we talked in the kitchen & my mom was talking about her fears etc regarding Tobias – I almost dropped down to my knees crying out loud, I wanted my mom to shut up, I wanted her to understand that she is not helping me at all by saying all these negative things. My mom held me tight & she was crying too. We cried for 15 minutes or so. My mom said goodbye to Tobias & left. At night I was thinking to myself; when I was a kid & scared of something, my mom could ALWAYS take away the fear & comfort me but all of the sudden, she can no longer take away my worries – then what? Who can take away my fears? It scares me so much. It actually opened my eyes a little, am not sure if it’s in the good way or anything but maybe it’s time to be realistic? But being realistic about Tobias, have I not been that all of the time? I know it may not make any sense to you.

My ex (Tobias’ dad) has completely given up on Tobias. My ex has told me for the longest time that I should be realistic & realize that Tobias is very sick, he will never be okay etc but every time I told him to stop being so pessimistic! I do think & always will think that he was way too pessimistic – what a coward!

But am I being too much of an optimist? I do believe that any parent should always fight for their children no matter what! & I will never give up on my son but on the other hand it has occurred to me that if not a miracle is soon to happen, then what?

Right now; Tobias can barely walk, he’s totally stiff in his movements, he just wanna lie in my bed all day, he can’t eat by himself, drink by himself, he still wears a diaper, he has no language, no sign language, can’t or won’t use his hands for anything, he doesn’t play, his temper is HUGE, he can’t get in a chair by himself – I think you get the picture, he’s like a baby but in a 5,5 year old body. I don’t wanna sound pessimistic but gosh right now time scares me!

All these negative thoughts keep wandering around in my mind & I don’t wanna be this person – I wanna be the happy mom with a happy face.

The doctors have for the longest time told me that Tobias is maybe not going to make it, he will never improve & I should think about other options than having him home or at least think about getting a relief family so I could relax etc. I always said NO I don’t need that but gosh what if I ever get that need? Would it happen, a mom not even being able to take care of her own son? What kind of a mother would I be? I would never forgive myself! Actually I feel like I should be yelled at for even writing this blog! But need to vent & I truly hope this will change my mood around because I don’t wanna cry every night. I’ve reached the point where people can almost not even ask me; how’s Tobias? Without me getting all teary eyed. It doesn’t feel good at all.

I know this; let go & let God but right now I do believe & feel that He should show himself in our life RIGHT NOW because time is running out – they all say that He will show up when we expect it the least but how can I not expect Him to show when we need Him to do so right now? What if I let go & time runs out? Will He then show & in what way?

People complain about when their children gets the flu or they are making trouble at home etc & I know that for those families these things can be “huge” problems but I would be so thankful if my son made some trouble at home & come on a flu will go away again! Tobias has no language but right now he could curse whatever he feels like, it would just make me happy!

I do think I’ve been realistic throughout everything we’ve been through & I have realized a long time ago that my son is very sick in some (unknown) way, but am I being realistic or pessimistic with my thoughts these days, can’t make up my mind. All I know is this; I love my son endlessly & I will never let him go! He’s my everything & without him, who am I?

About majasf

Single mom
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2 Responses to Being realistic, pessimistic or just giving up?

  1. Laney says:

    Honey, you have absolutely every right to feel the way you do. I wish I were there to sit with you, cry with you, help you with Tobias… If I could, I would be there in a heartbeat. Right now you’re tired. You’re mentally and physically tired, and you have every right to be. You have the right to be scared for his future. You have the right to be scared that there may never be a diagnosis or what that diagnosis may be. You have the right to need help. Those things don’t make you a bad mom. They make you human, and you are, honey… As much as you try to be SuperWoman, you aren’t. You’re human, and we all have doubts and we all have fears and we all break down. Let yourself have that.

    Just the other day, I saw a statement, and I thought how very true it is… “If you’re going to have faith, you can’t just have it when the mircles happen. You have to have it when they don’t.”… It’s hard to hold onto faith when you’re waiting for a miracle. You start to question and you have doubts. And I know you’ve been waiting a longtime for your miracle. As hard as it is, God works in his own time, not ours. And that may be two years. It may be five years. It may be ten, or it may be tomorrow. We don’t know, because we’re not meant to know.

    I know that’s not the answer you want. I wish I could give you the answers you want. I wish I could tell you what to do for Tobias, what he needs. I don’t have those answers, though. All I know is that if you want to take care of your little boy, and I know you do, then you need to take care of yourself. You need to let yourself break when you need to break. You don’t always have to have a smile, and it’s okay to admit when things are hard or you’re scared ad hurting. That doesn’t make you a bad mom. You need to have those moments of release so that you can build yourself up again and be there the way you want to be for your Lil’ Man.

    And I know that there is an ocean between us, but I will always do anything I can to help you. You are both in my prayers every day. I just wish I could do more. I love you, honey! XXOO

  2. Katie says:

    Majas,
    I completely 100% agree with your friend Laney who posted above me, I couldn’t have said it any better! I also wanted to say that in response to “He’s my everything & without him, who am I?” – you are still Toabias’ mom, you always will be. You have already given so much for him, you ARE a fighter! Just because you are realizing some things, or coming to terms with acceptance of some things, doesn’t change who you or or what you are doing to help Tobias.

    First and foremost you have to absolutely take care of you, physically and mentally, so you can be there for your son. It is so hard since you are in a different country, I don’t know how things work there or culture. Here there are counselors to help families going through medical events that serve as a guide/advocate. I hope that you can find someone where you live that can help you talk through how you are feeling and help continue to give you hope for the future. This doesn’t make you any less of a mom or a bad parent at all!

    What a scary experience it is to have a doctor give up on your son, I cannot even fathom it. While the reality is what it is, that doesn’t mean you have to or are supposed to just go along with it. God does have his own timeline and brings things into our lives to help teach us how to be strong and courageous and to trust in him through everything. It is good for you to vent, that is healthy verses bottling it up inside. Maybe you should look into respite care (what it is called over here in the states), to help provide you some relief. Again, that doesn’t make you a bad mom or a bad parent at all. People are there whose deepest passion is to help others going through difficult times in their lives. They are devoted and selfless and want to provide comfort during the darkest of days. Reaching out to someone like this is an act of courage and strength. You need to breathe too.

    Your son knows your love, even if he cannot communicate with you or others. Love is not a word or an image. It is a deep form of energy you feel with your soul. Studies show that people in comas respond to the touch of someone they love. Even if the response is just a lowered heartbeat, or a slight improvement of vital signs. We do not know what is going inside the mind of Tobias, but I am certain that his little soul is moved deeply by how much love you have for him and show to him every minute of everyday. I don’t think you are expected to smile all of the time and be “fine,” you should be honest with this doctor. They have a responsibility to care for you as well as for Tobias and not turn their head the other way.

    I wish I knew what words to tell you to make you feel better or to how to help you and Tobias. The best I can do is listen and send you my thoughts & prayers across the Ocean.

    -Katie

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