Depression, son with disabilities

[Amore84]

Hi

My son is 3 and has disabilities. There is no diagnosis for him & we don't know if he will ever walk or talk.
I never knew there were so many ways to have your heart broken. It's particularly hard when we see him with other 3 year olds & see how different he is. I love him with all of my heart but my heart is equally broken. I try to stay enlightened, he is happy & healthy otherwise. All the Drs know is that he had hypomylination but they can't find a disease that caused it. He improves each day & we are hopeful.

Anyway I just wanted to share that I have this sinking feeling every day. I've never had depression before. But it seems like this is it. Its just this sinking feeling that never goes away. Its there when I wake up and all day. I used to wake up with excited butterflies if I had a fun day planned. Now I wake up and have to look through the sinking feeling to conceptualise the day ahead but I don't feel the excitement and life force I used to feel.
I feel like im faking happiness when I interact with people they way they expect, a way that reflects my bubbly personality. But I don't feel how I'm acting. The uncertainty & grief for the life we thought we would have weighs heavy. The worry that our beautiful darling won't ever be able to walk to the water at the beach or know what its like to have a friend breaks my heart.

This is my story.

[Sophie_M]

Hi Amore84,

I am so sorry to hear about the experiences that you and your family have been going through, and I can understand why you would be feeling so worried about your son and the negative impact this has all been having on your mood. 

It's really great that you have reached out today, and please know that the forums are always a safe and nonjudgemental space to talk about what has been going on. 

It sounds like that right now you are going through a lot of difficult emotions, such as sadness, worry, and grief over your son's future and what his health will be like. It makes a lot of sense why you might be feeling this way, and I think that's why it is important for you to be able to receive help and support during such an uncertain time. Outside of our forums, please know that you can also call our 24/7 Support Service at 1300 22 4636 to talk about what is going on, or talk through webchat from 3pm to 12am AEST as well.

Please keep us updated and take care.

[Juliet_84]

Hi Amore84,

You sound like such a loving mother and my heart breaks for you. It sounds to me as though you are grieving, grieving for the loss of what could have been and the life that you want for him. What you are feeling is perfectly normal and it may take you some time to come to terms with your sons disabilities before you can accept that this is the reality of the situation and feel better about things. I myself was diagnosed with a disability when I was young that shaped my life and suffered a stroke at the age of 30, and what I will say is that no one gets a free pass in this life. We all go through hardships and have difficulties, and your son’s may be a little more obvious at this stage, but he will know beauty and kindness and friendship like we all do. I know for a fact that he is surrounded by a loving mother, something that a lot of children do not have, and I am certain that you will look after him to the best of your ability. Part of that will be socializing him with other children who also have disabilities and who he can bond with in his own way. A pet may also be something that will give him much joy as he is older. As time progresses, you will find yourself focusing more on what he can do rather than what he can’t. I am glad to hear that he improves each day, and am hoping that this continues for you. The brain is an amazing thing, I had to learn to walk again after I had a stroke and now you wouldn’t know to look at me. Thankfully I was young and was able to retrain different parts of my brain to learn those skills. Although his future may look a little different than what you had planned for him, don’t give up hope xx

[Amore84]

Thank you so much for your kind words and for sharing your story. You sound like an incredibly determined person to face your disability then learn to walk again.
Thank you for your wise kindness.

[Juliet_84]

It was my pleasure Amore84. I didn’t want to take away what you are experiencing now by sharing my own story but I hoped that it could give you hope also. The brain is a magnificent (And at times frightening) thing, particularly when you are young, and it can be taught to learn new things using different parts. I think it’s always important to maintain hope. But also to give people an insight into people with disabilities. Although our future can look a bit different to yours, we are also gifted with things such as gratitude, we never take for granted being able to do things that we once were unable to etc. It also makes us seek out people who are kind and understanding, which is a gift. I think that it can often be so much harder for the caregiver. Do you have much support around you?

[Amore84]

Thank you. This conversation is an incredible experience I've never chatted online to a stranger before. Its a good reminder of the kindness of strangers. We have lots of support from friends family and the NDIs. He has an excellent therapy team. The greatest daily struggle is focussing on the now. Its our big life lesson. Thinking 2 years, 5 years, 10 years ahead into the unknown is stressful & pointless. If we focus on that what we have will pass us by. However no matter how much we focus on the now, seeing another child his age do things ours can't do gives you a little shock to the heart as it breaks a little bit more.

But then looking at our sons smiling face & sparkle in his eye fills us with such love. Its such an insane up and down roller coaster.

I'm not religious in a traditional sense, I am spiritual. However I heard a question... If you were in a room with God what would you ask him? I've been thinking about this, I can't escape that I would ask "why me? Why do I have to take this heartbreaking path?"

I know allot of people think that things in life just happen, without cause or reason. I believe we are all given paths for a reason and purpose.

[Juliet_84]

Hi Amore84,

I’m glad to hear that you have found our conversation a positive experience, I have too 🙂 I myself have gained a lot of comfort from people on these forums, often during my darkest moments, when I have needed it most, so it’s nice to be able to be on the other side. That’s the great thing about online conversations I think, that you can be completely free to share your innermost thoughts and worries, things you may not feel comfortable sharing with people during your day to day life. It also allows people an opportunity to be that support for someone and offer up a different perspective.
I can imagine what a roller coaster it must be for you, and the heartbreak of seeing another child doing things that your beautiful boy can’t. It’s only natural to be angry or question where is the fairness in that. As I mentioned, I have had a number of health blows over the years, and somewhere along the way I came to expect that bad things would happen to me, that I was jinxed. I got baby chickens as pets and decided that, because I loved them, they were going to be taken from me. As such, I get terrible anxiety whenever having pets despite loving them dearly. Irrational but our brain tries to make sense of things that there is no explanation for. I imagine that is what leads us to question “why me”. We are told that everything happens for a reason, so what the hell is the reason for this if that is the case. I indulge in it occasionally, I’m human after all, but I now recognize it as a negative unhelpful thought that needs to be squashed.

I’m glad to hear that you have a great support network around you. At the end of the day, the people around you is all that matters. Your sons smiling face and sparkling loving eyes is a perfect example of that. The fact that he’s smiling and happy. As he gets older, you will find that your focus will shift from what he can’t do to working out what he can do. Look at Stephen Hawking and what he was able to achieve despite his severe disabilities. An extreme example perhaps, but there are many such examples of people overcoming their disabilities or at least working around them. He may need to work a bit harder at things, but from my experience there is immense joy in the things that are harder won. And resilience isn’t such a bad trait to have in life I figure!