Constant Sadness For My Child

[mama13]

It's like this pit in my stomach every time I hear her say, "I could do that before my accident..." and when people ask me about her abilities...and people ask all the time. And, even the word "accident" has become like this immediate dark cloud hovering over me, taking me back to the day of her fall, resulting in her head trauma/brain injury. I do so well most days, telling myself how grateful we all are that she is alive. Then it just hits me hard when I hear her friends talking about things they are able to do that my child was as well, but now her injuries have set her back. Everyone always tells me, "yes, but how lucky are you, she survived." I know, God, I know how immensely insanely humbled and grateful...yet I ALWAYs come back to you, but I am so sad that now she has to carry this story with her for the rest of her life. Will it f*ck her up? Will she always wonder the things she could have done if it never happened? I can't escape this constant anxiety that creeps up into every conversation or thought I have...I just want her to feel whole and happy.

 

[mama13]

It's like this pit in my stomach every time I hear her say, "I could do that before my accident..." and...

Also, not sure where to put the topics I write about and so sorry if it belongs somewhere else.

 

[Sailor_Jerry89]

People tend to try to play things off as 'oh, it will be fine, focus on the good' when it is a psychological issue. I have been told it again and again, even to senior enlisted who ask why my 'treatment plan isn't 'solid''. They don't understand that it isn't as easy as saying, "Of course, why didn't I think of that? Let me just turn this frown upside down". Your feelings are valid, don't let anyone tell you otherwise.

As for your daughter (child I am assuming correct?), I have found people to be amazingly resilient, especially children. As she grows she will find ways around her obstacles, and it is your job to be there for her and offer support. Don't hide the fact that she was injured, don't avoid it: help her accept it. Instead of "You are no different after your injury", try "Yes, this happened, but here is a way around that" or "Let us try this instead". Avoidance leads to uncertainty, and bottled feelings. We all know how bottle feelings end up. I am not a psychologist or doctor, I highly recommend taking her to see one if she hasn't already. Just my two cents from experience.

 

[ladee]

I would love to tell you that if we just work hard enough and stay mindfull that our mama heart's accept what is.
Many moms on here with pure powerlessness over our kids situations.
You just keep loving here. Encouraging her. Doing what you can for her and encouraging her to do the things she can do for herself.
Happiness is an elusive prize to begin with. Do we ever accept our powerlessness to FIX it?
So far that is a NO from me.
I work on it as there is nothing else I can do.
You are not alone. And I hate that for all moms....and dads.
I appreciate you sharing. Hopefully others will share and we just hold hands thru the dark times.
Glad you are here

 

[Friday]

One of the things that was the hardest for my son was trying to go back to the things he used to do, as if the same rules still applied from before he got sick. He'd ask something of his body, and it just wouldn't respond the way he wanted, so he'd get hugely frustrated, sad, angry, and give up.

One of the things that we found worked to nearly sidestep that entire cycle of awfulness? Do different things. I know that sounds ridiculously simple, and in a way, it is. But with sports, anything that required the same stuff as he used to do -even if it was a different sport- just brought in the Badness. His 5 areas he looooooved were gymnastics, freestyle snowboarding (which is essentially gymnastics going wicked fast downhill), skatepark (same, but instead of sliding when landing like snow, leaving skin behind on concrete), breakdance, & freestyle running (essentially parkour). So we had to reeeeally search for sports he would find fun, that used entirely different skill sets. So that he could learn them from the ground up, instead of them being natural extensions of each other. But that still had the whole body thing he loved, because if it didn't, he hated it, period. Literally went through and crossed sport after sport off the list one by one, until I could figure out that it couldn't involve running or flinging your body through the air. That those were the pieces that just broke. his. heart. when his new body just couldn't do what he was asking it to do. Found Aikido/martial arts. From there he learned to work with his new body. Regain skills, and strength, & self confidence. After THOSE 3 had been regained? He started dabbling with things that broke his heart, before, but didn't now because he had different expectations of himself. 7 years later he can even do some of his old 5. Not at the same hellbentforleather kind of way he used to, but still with a huge grin on his face. It took time, though. Time to recover. Time to rehab. Time to find new things to love.

Same was true for other areas. Things he could do before spending 6mo in hospital, and then a year recovering, were often just too hard for him. Things that reminded him of those things he loved, broke his heart. So we really had to go on a series of missions to find new things for him. Yes. A lot of it was gutting, heartbreaking, & grieving was a big part of that process.

As parents, we want the best for our kids. When we see the best taken away from them? MamaBear doesn't even begin to tip the iceberg. It's f*cking hard. And it's a very different process than they have to go through... Our kids are our trust, our responsibility. It can get complicated. And it can have some serious legs.

This is a poem that was making hospital circles about life with a severely disabled child several years ago when my son was first sick. If you haven't come across it before, it's a really good one.

Grief by Heather Schichtel

I sit on the park bench eating popcorn and watching young children on the playground. I am enjoying the day, the sun on my face, and the smell of fresh grass.
Randomly I think, I wish Samantha could run and play with these kiddos.
And there it is, the cold hand in my cheesy popcorn; the presence taking up too much space on the park bench, blocking my sunshine. My Grief….
“Really?” I say. “I didn’t invite you. Get your hand out of my cheesy corn.” Instead, I end up having to scoot over, making more room for my Grief.
Grief comes and goes when I least expect it. I’ll be in my car, driving along listening to music and I’ll catch it in the corner of my eye, kicking the back of my seat.
“Hey Heather.”
“Aww crap, what are you doing here?”
“It’s been a while. I thought I would stop in for a visit.”
“Well, make sure you fasten your seatbelt and be quiet. Samantha’s sleeping and I don’t want you to wake her up.”
“Can I change the station?”
“No.”
“Can I play with the window?”
“No, you can just come along for the ride.”
So we go on the ride together; fingernails thumping on the dashboard as a reminder of who decided to show up today. Yes, I am quite aware of your presence, you don’t need to remind me.
Grief’s appearance used to rattle me, send me into the bathroom, crying hysterically. Render me worthless for a day. Sometimes it still does but as Grief has been established as a consistent visitor in our household, we have drawn up a contract. We have an agreement.
As the mom of Samantha, a child who does not walk or talk, a child who is suffering from a mitochondrial disease, I will grieve. I will grieve for many dreams that will not come to fruition. I will grieve for a life I thought would be different.
I will grieve at times. And I will not grieve at times. I will laugh at times. I will not laugh at times.
Grief can come into our house but is not allowed to stay. If allowed to stay, it would devour the corners of our house. It would suck up the oxygen in the room. It would consume me.
And that is not acceptable.
Grief tends to run within the Special Needs community. I bump into him quite often.
How are you?
My daughter had pneumonia. She is in the hospital on a ventilator.
I look around and see Grief, sitting on the couch, smugly picking at dirty fingernails.
And I meet those who sadly keep very, very close company with this unwanted guest. Grief hangs over them like a shroud. It is hard to laugh. It is hard to love. Because in copious amounts Grief tends to ooze; like a nasty septic wound…draining life from us.
But we still have to laugh, we still have to play, we still have to live….life carries on…
….and on
....and on….
I cannot, at the end of my life say….well, it was long, hard and I was sad.
Surprisingly, our relationship is not based entirely on conflict. My interactions with Grief have allowed me to see myself entirely raw, unprotected, and exposed. At times I feel that I have lost my skin…..yes, here I am. Be careful, that’s my beating heart you see there. Oh no, no, do not touch.
I am no longer afraid to approach others regarding their own tragedies. I bring up the tough conversations. How is your mother? I am sorry for your loss. I am so sorry your daughter is in the hospital. I hug, I cry, I listen. Not because I am an uber-sensitive but because I know Grief sometimes travels alone except when he travels with his favorites… Isolation and Loneliness.
Sometimes Grief shows up at a party…..drinks my wine, eats my last bite of fudgy dessert. It’s an annoyance really but since Grief is not a constant life guest, I have learned to tolerate the time we spend together. Sometimes we even enjoy an introspective moment or two.
We have set the rules and sometimes they are followed. We cannot have a permanent impy, uninvited, grievous house guest...we don't have the room...not in our lives, not in my heart...life is too short and despite the bad things that can happen... life is too sweet.

 

[Deleted member 541]

Love her as much as you can. I think the most important thing that you can do for her though is, NEVER ever let her feel like her disability will stop her. Let her try, let her grow, let her flourish to her fullest.

The more that she can accomplish for herself, the less that you will hurt for her. Let her grow, and your sadness will diminish.

 

[Justmehere]

I think a lot about what I could have done before a particular injury... it's very hard to let go of what I used to be able to do.

It has helped to find new things to do, rather than always try to get back the past abilities (which may be important to strive for but keep in balance.)

While your daughter will carry that story for the rest of her life, I can attest that she will carry a lot of other stories, ones that can become even more powerful. Like that of how she was so dearly loved by her mom that she stuck by her side through all ups and downs of life.

The accident is a deep and painful story, and the old chapters before the accident can't be lived again, but don't forget that her story isn't over yet and she has new chapters to write.

:hug:

 

[ladee]

Thank you @Friday .

 

[mama13]

People tend to try to play things off as 'oh, it will be fine, focus on the good' when it is a p...

Thank you. Most people do tell me to see the silver lining and that perhaps things "happen for a reason" and she was destined for a new path. I just have trouble understanding that as an answer some days. And you know what, I talked to her about what happened today in the car, when her friend was saying all that she is doing in dance and how she's being moved up many levels. My daughter cried and said it made her very upset. I hugged her and told her that she is valuable, for many reasons, that she is smart and funny, sweet and lovable. And, yes, there will be times that we may feel jealous or anger when we think others are doing better than us, but always remember that to ME, all I ever want is to you to feel supported, loved, and listened to. I will look into therapy because I fall short on exactly how to handle when her peers are doing things she desperately wants to get back into doing - things that she had done so well. Trying...I'm trying...thank you for your advice.

 

[mama13]

I would love to tell you that if we just work hard enough and stay mindfull that our mama heart's accept...

Thank you. I am trying to work through all the frustration and emotions for my baby. It's hard to even look at pictures pre-injury. I always have a sense of sadness. Thank you for you words. I am glad there are listening ears...

 

[mama13]

One of the things that was the hardest for my son was trying to go back to the things he used to do, as...

Sounds like your son is so much like my daughter - she was a gymnast, snowboarder, acrobat - incredibly fearless. Quite honestly the physical weakness and limitations is quite a hardship for her. Gym is her favorite subject in elementary school. I know the future may change regarding gym and climbing, playing at recess, but maybe it won't. I am so sorry for your struggle as a parent and for your son as well. I am so happy that your son finally found activities that inspired him again. We are trying yoga and piano, ballet and even tumble, but she has to go to the lower level with younger kids when she was once considered for Level III with pre-teens - my daughter is 7 years old. It's so crushing and defeating to watch her struggle and want to regain all she lost. I will do anything for her and support her. Thank you so much for your words. They ring so true to my own issues that I am dealing with right now. Gives me hope. And the poem made me cry...a good cry.

 

[mama13]

Love her as much as you can. I think the most important thing that you can do for her though is, NEVER e...

Thank you. I needed this today.