Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

If you really must know . . .

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Dear Facebook,

Every single time I log on, without fail, you ask me one simple question. Just one.

“What’s on your mind?” 

If only my answer tonight was as simple as the question you ask me every single day. But it isn’t. Tonight, my answer is complex and, quite frankly, utterly heartbreaking.

You see, tonight I had to hug my son tight and dry his tears as he asked me “why is it so hard?”, and “why did it have to happen to me?” And I couldn’t answer him. Because I have no answer. I mean, what answer could you give to explain why a perfect and beautiful little boy would be dealt such a terrible hand in life? How do you explain to your son that life is random and shit happens? Because this IS shit. It’s absolute utter shit. He cried, big fat tears (and even snot tears), because his life is so hard and he can’t do anything, or play anything, or do what other kids do. I know some of you will suggest I tell him that there are so many other things he can do, and to look on the bright side and live in the moment. And all that other shit that people say to make themselves feel better. And if that’s what you want to say, then I suggest you go say it to someone else that will appreciate it. Because if you say it to me, I will just throw it back in your face and unfriend you. I don’t need to hear it. Not right now. Right now, I need to try and soothe my boy in the hope that he will calm down, stop hyperventilating, and start breathing normally again. Right now, I need to just let him cry it out and be angry with me and the rest of the world. Right now, I can’t do anything but agree with everything he says. Because it’s how his father and I feel as well. It’s just not fucking fair.

Today is Sunday. Many families here on the Gold Coast spend warm sunny Sundays on the beach, either doing Nippers or swimming or surfing. James has always loved the beach, especially the surf. But enjoying the surf is no longer a possibility as he fatigues quickly and can’t even maintain his balance when the smallest of waves hits him. And once he’s down, he can’t get back up. He can barely keep his body upright. It’s hard for him, seeing the ocean every single day, hearing how much fun his siblings or friends have at the beach, knowing that he can’t enjoy it. Oh yes, he has a beach wheelchair, but he’s 11 and he doesn’t want to be different. He hates that people stare at him, that they feel sorry for him, that they aren’t able to treat him like a normal kid. When we grow up, we all want to stand out from the crowd in some way, but kids are the opposite – they just want to be like everyone else.

Anyway, being Sunday we had to get out and do something as a family. But what do you do as a family when one child is not only wheelchair-bound, but also has immense body weakness and fatigue? The only thing we can do as a family is go somewhere for lunch. Let me tell you, going to lunch every single weekend becomes not only boring, but usually very expensive as well. And yet we still do it because that’s the only thing we can do together that he enjoys. He has no friends, he certainly has no social life outside of school. We even restrict our 10 year old daughter from doing more with her friends because she’s the only real friend that James has, and we will do anything to make him happy. I know that’s not completely fair on her, but she’s such a sweet and caring girl that it usually doesn’t bother her. Eventually, though, it will. Eventually, he will be left with no one but his dad and I.

Tonight, he asked me why his friends have birthday parties and don’t invite him, even though he asks them to his. Only one boy has ever asked him to his party, and that boy wasn’t even his best friend. Tonight, he was upset because the boy he calls his best friend had a birthday party and he wasn’t invited. I was hoping he wouldn’t find out, but you know how kids are – they like to talk about what they did on the weekend. That’s how he ended up hearing about it. He doesn’t want to go to school tomorrow, and has begged me to let him be homeschooled next year. Truth be told, I don’t think it’s such a bad idea. After all, he rarely has anyone to talk to at school, and he spends many lunch times riding his motorised scooter around the school. By himself. To waste time until the bell rings. Can you imagine what your time at school would have been like if every day was like that? With no friends to play with, or even talk to, riding around school by yourself on a scooter wishing the bell would ring? School was hard enough, trying to fit in and avoid the bullies. Imagine not having any chance of fitting in. Imagine kids constantly staring at you because you are different. Imagine being harassed and not having friends to defend you. Imagine having no one to play with. Imagine how lonely his life is. And imagine how, as a parent, it kills us to be so helpless, unable to make the pain and hurt disappear. Because tonight, it’s how I feel. That’s what’s on my mind.

You asked, Facebook. You just had to go and ask. If you really must know, THAT’S what’s on my mind. And I bet you now wish you’d never asked in the first place. Because ignorance can be such bliss.

Signed,

Heartbroken and Helpless.

  • Erin - My son is 9. His name is joe. He would love to be a pen pal with your son. I explained a bit about his struggles. He was excited to talk to a boy half way round the world. He is in grade 4 in french immersion. I am a family law lawyer. My partner is a glazier. We are fairly normal folks. Email Joe at joelumley8@yahoo.caReplyCancel

  • Katrina - This is one of the hardest things I’ve ever had to read. I’m so sorry for your sweet boy.ReplyCancel

  • Kimmy Watters - please know how sorry i am , i know you hear it a lot, but i care and you son is special, love. i believe he can do anything he wants nobody can take that away form hin. i believe in him kimmyReplyCancel

  • Randy - I can symphasize. My son too is in the same situation. Heartbroken is right.ReplyCancel

  • Louisa - Thank you for sharing it helps others as well as yourself. God bless you and yours are in my prayersReplyCancel

  • Mel - I’m so heartbroken for your son & all of our children. I will send love & light & prayers. My son 8 & is weakening more & more daily. This is such a cruel & f###ed up disease. I truly believe it’s hell on earth & really hope & pray in an afterlife where our boys will be free. I don’t understand how people can be so cruel. So many prpple really don’t get!!! God blessReplyCancel

  • Yvette - Lots of love from another family where this bastard disease has destroyed. Same shit different country. Your posts make me realise that the world is not such a lonely place and we are not on our own. Big hugs xxxxReplyCancel

  • Amy - My heart aches for you, because we have been there. Although my son is now a teen, we still live it daily. Would love to penpal if you’d like!ReplyCancel

  • april - My son says the same to me. 🙁 i wish i could take all him pain away. So he can enjoy being a kid and do things like other kids. Are boys are very special:) God Bless them. You and your family tooReplyCancel

  • Candy - I’m truly sorry your child and others with this wretched disease have to suffer so. He is lucky to have such a caring and compassionate family. Best wishes to you all.ReplyCancel

  • Melissa - We seem to be living mirrored lives although I’m in the US. My son is 10 with DMD and you described his behavior when you wrote about his anger, outbursts, etc. My husband is the photographer in my family. Thank you for writing the words I wish I could say.ReplyCancel

  • Wanda - My grandson, Cooper, is now 9 and also living this Duchennes nightmare. I currently homeschool him as I am a retired educator. Cooper feels alone in this as there are not others that have this here. We are surrounded in really great people, but it is still so hard for him. Cooper could also be a pen pal. I will clear it with my daughter should you write back. We also live right on the beach which he is crazy about. Sounds like they might have common ground. I know that writing gets tedious and tiring too for our boys. Your family and your son will be in my thoughts and prayers.ReplyCancel

  • sally - I have nothing to say other than to acknowledge that you are right to both feel sad and heartbroken.

    I hope you and your son both have better days that you can share with each other soon. SallyReplyCancel

  • Melissa - All I can say is I love that you wrote this. My heart just Aches for your sweet boy and for your family. While my oldest child has no physical limitations, he is autistic and can be violent during an ‘attempted’ outing. In fact, he is during nearly all. My two younger children don’t get to do much outside our house that we call a prison. My son has no friends, but sadly, in his case, I don’t think he knows the difference. I offer you understanding and love. I know that the two of you must be incredibly wonderful parents.ReplyCancel

  • jeani - From the bottom of my heart, I’m so sorry😔 I can’t imagine your heartbreak. It seems sacriligious to even touch the 👍🏻 ‘Like’ 😪Your beautiful image evokes such emotion …. I just want to reach out and hug you all❤️ReplyCancel

  • Jeannette - Our son is 28. He is a very bright, positive man. I totally understand your feelings. We live with DMD for 20 years now, when our son was diagnozed. We have one older, healthy son. What we do with our family, is watching movies, dvd’s. We all love it and that’s the thing we do together. Going shopping. Like Ikea or something. But since 2004 no holidays. Takes 3 hours to get him ready in the morning and 2 to get to bed…he has a trachea tube since 2014, but doing very well since. He never asked us: why me. He is such a strong boy/man…but my heart is constantly broken. He has so many talents, but is not able to use them properly. But is able to lead a meaningful life….he is everything for us, for me. My rock. But I know that dreadful day is coming.
    DMD is a monster.ReplyCancel

  • Brid Murray - Why didn’t you let me die? My nephew said this to my sister. He is 22 with DMD. Howe do you answer any of these questions? There are no answers and yes, it’s totally shit. I’m just waiting for my 16year old to ask me the above question and I cannot prepare an answer. How can I? Hugs Sharyn and Julian xxReplyCancel

  • Hope - you know exactly how I hard I am crying as I sit reading this post having just found your blog….reading my life coming from your finger tips and all I can and have to say is THANK YOU!ReplyCancel

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