I am starting this discussion for any dads out there that have experienced the death of a child. I have. It's tough. I will again, which will be more tough. I know there are more of you out there.

Are you finding rest, peace, and support through friends and family?

What works for you as you grieve?  What doesn't?

Tags: dad, death, disability, family, father, grief, sma, special needs, spinal muscular atrophy, suffering

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Thanks Chris, and same to you. Some family situations are definitely similar in nature, despite who has passed. If you don't mind me asking, how did he die?
Wow. That is rough. We have had to fight so much with Dr's and hospitals to avoid mistakes. Sorry to hear about your experience.
We all grieve in different ways, that is for sure. We also must help our oldest child grieve - she remembers her little sister very well and is good friends with our youngest, who has beat the odds of SMA at this point.

I hope and pray your family members grieve well. :) You aunt and dad must really miss their kids.
My wife and I lost our child in August while she was 20 weeks pregnant. The baby had a condition called Potter's Syndrome. It was delivered as a stillborn. Nothing could prepare us for the event. All signs pointed to a healthy baby until we went in for the 20 week check up and they couldn't find the kidneys. Our world was immediately turned upside down.
After the delivery we attended a support group for parents who have lost children during pregnancy or very soon after giving birth. It helped to hear other people's stories, but it didn't ease the pain.
My wife found support through message boards, through her friends and her family. I handled it differently. I was diagnosed with depression and was put medication. Since I've lived with depression since adolescence I wasn't surprised by this. I attend therapy sessions and I try to look at the situation as something that happens and is a part of life. I still miss my child. I still think about her. I still grieve.
My wife and I are currently expecting a child in October and everything is going just fine. I try not to worry and live in fear because I found that it is a complete waste of time and energy.
I'm sorry to hear about your loss. I wish you and your family peace and comfort.
Still struggling with coming to terms with the inevitable over the last eight months. Our oldest daughter, Bethany (14), was diagnosed with an incurable mitochondrial disorder called MELAS. Part of the disorder results in periodic "stroke-like" episodes. We had a major one where she was having seizures pretty much nonstop for an entire week. That one was pretty debilitating. She came out pretty much like a stroke victim. She has gone downhill since then as well. Up until this past October (2009), she was a pretty normal kid, though she had anti-seizural meds and a ton of supplements. She also got tired really fast and really easily (mitochondria produce your body's energy).

Since October she has developed severe ataxia (balance and walking problems) to the point that she is in a wheelchair most of the time. She cannot walk unassisted without falling. Since January 2010 she has also now developed dysphagia (trouble swallowing and speaking). We had to have surgery to install a G-button at the end of March in order to get her meds and full nutrition. She has also been doing PT, OT & Speech therapy since October, and our local rehab center chose her as their patient representative this year:

We just take things day by day and rely on our faith, family and friends to get through.
How incredibly sad. I can't even imagine what you must be going through. Praying for you, your daughter and your family.
Thanks, Michael. It is sad, and it is hard to deal with. You have your meltdown moments, though I don't ever let it happen in front of her. I find I tear up easier these days as well. I'll also admit to a number of late-night arguments with God. I don't think there is anything in the world more hurtful and frustrating for a Dad than to have something wrong with one of you kiddos and NOT be able to do a damn thing about it.

As she deals with each new problem and issue, my daughter has succinctly summed it up: "This sucks".

On the flip side, we have grown closer as a family. You learn to appreciate and treasure the little things, and you learn to never take anything for granted. Even as a teenager, I take the time to put things aside and spend time together, sometimes just sitting on the couch with her leaning against me and laying her head on my shoulder. Some things just never get old and they never get too big for.

To those who have never experienced this road, I just say this: Learn and appreciate what we deal with. Appreciate your children. When they are running around insanely and won't shut up, be GLAD THEY CAN. I remember being irritated when my daughter was younger and would talk your ear off at times. Now, as she struggles to get intelligible words out, I would KILL to give her back her voice. I would LOVE for her to be able to run around like an idiot and play like a normal kid.

Treasure each moment, and never take tomorrow for granted. Look through my eyes at how things can/could be, and keep that perspective in your heart and treasure the gifts you are given.
I have not lost a child. Recently a family friend lost her son. He was in his 20's. A good kid. I am not sure what caused his death. He went to bed one night two weeks ago and never woke up. I cannot begin to imagine what that must feel like. I have been in a deep depression since last year after losing my mother suddenly to a very rare Neurological disease. I almost feel selfish compared to what some of you are enduring or have endured. My hat is off to you. I am humbled and all I can say is that you all inspre me to be a better, stronger father and husband.

Thank you

I've lost an infant child. I wish also there was a magic potion to take away the grieving, but there isn't. Time will not heal the wounds as such, but it will leave you much stronger. It's no comfort at all to know you are not alone. All we have is the here and now and only the moment in which we currently are with those that we care about, so cut the BS and don't focus on the petty things but work on what is worthwhile. Live your life so you have no regrets- if you've got something to say to a loved one, better say it right now for tomorrow is not a promise.
Don't bottle up the grievances, find someone to let it out to. It doesn't matter who it is, just as long as they are genuine, and care.
I have not lost a child.

I was working ski patrol one day when a 15 year old was killed in a snowboarding accident. I was the one who notified his father. He looked at me and asked "How am I supposed to go on?" It was the most difficult situation I have ever dealt with. I just did not have an answer for him. I not sure there really is an answer to that question.
How do you go on? One step at a time, one moment at a time.


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