The Important Things in Life

[EvrClrx311]

I hesitate to post this as I'm new to the community... but I've made a few vague references to my daughters medical situation. Also as it relates to FIRE (more text below the video) I was curious if anyone else has been faced with a similar situation... feeling obligated to financially support a child longer than 18 years. In our unique case, if she does only have 30 years, we'd want her to have the choice not to work her last years... but rather enjoy life.

Should make you smile this holiday weekend... and cry at the same time (fair warning, have a box of tissues handy)

EDIT: looks like you actually have to visit youtube to view it by clicking on the top left... apparently it is blocked from embedded streaming due to copyright nature and one of the songs I used in the background.
[youtube]48vmNnsgyos[/youtube]

Over the last year we're had to reevaluate our FIRE plans to adjust for the fact that DW and I will most likely outlive Isla. She will almost certainly get a normal childhood and live to at least her 20's but the life expectancy of her heart is about 30 years.

Who knows that the power of medicine and science will be able to do in 20-30 years also a heart transplant around that age could extend it to more like 50-60, but is very risky for her. We've also banked the stem cells... could really come in handy down the line.

What is important now is that she's happy and healthy... absolutely no different than any other 7 month old, and at the age of 15 she'll be absolutely no different than any other teen. We are blessed.

 

[Spanky]

Thank you for sharing such a heart-wrenching story. It is hoped that advances in medicine will come to the rescue for both extending life and improving quality of life.

 

[EvrClrx311]

Thank you for sharing such a heart-wrenching story. It is hoped that advances in medicine will come to the rescue for both extending life and improving quality of life.

That certainly is the truth. To put things in perspective, just twenty years ago 100% of babies born with this died at 3-7 days old (fitting the category of SIDS usually). They are born looking healthy, then take a sudden turn for the worst around 3-5 days old as their heart/lung system reaches max capacity.

Today, 75% of them survive to 2 years old (when operated on)... and 97% of those make it to 20. Who knows what another 20 years will bring

 

[eytonxav]

That was a beautiful if not tear jerking video. What a lucky girl she is to have a family like yours to be part of. God Bless and never forget miracles are part of his plan.

 

[Spanky]

Who knows what another 20 years will bring

More breakthroughs -- higher longevity and quality of life.

 

[omni550]

Thanks for sharing.

Isla is a beautiful, happy baby who is obviously well-loved.

Miracles and advances in medicine can and do happen. Here's hoping that Isla is one of those lucky ones who will benefit.

omni

 

[Moemg]

She is a beautiful baby and you are great parents ! I hope she gets to fulfill all your dreams !

 

[Aiming_4_55]

Thanks for sharing. Isla is a beautiful baby and full of love.

We have a few things in common as modern medicine helped my daughter in many ways. While one day ER is important to me, there are other important things.

Enjoy each moment.

 

[obgyn65]

Isla is beautiful.

Agree with the quote below.

Best wishes.

What is important now is that she's happy and healthy... .

 

[KM]

EvrClrx311,

First off, thank you for sharing you story. We often forget how fortunate we are until we see what others are dealing with.

I have a daughter with a chronic health condition and have known a couple families with children they will need to care for well into adulthood (for health reasons). I think what you will discover, as Isla grows up, is that she will develop her own amazing support system of friends. As cruel as kids can be some times, I have also seen them be amazingly supportive to peers with similar stories. Although it is not likely something she will want to publicize to everyone, as her friends become closer friends, they will learn of her condition. And I think you will be amazed at how protective they will become of her and the support system they will offer. As a parent, that will help you a lot.

And as we all know, medicine changes and improves every day. What is risky today, could be so much less so in 20-30 years.

P.S. She has a beautiful smile….. You are blessed and she is blessed to have you and your wife as her parents.

 

[Midpack]

What a touching video, I cried, but I smiled a lot too. The music/lyrics were wonderful, someone's very talented.

She is just beautiful.

Medicine will undoubtedly advance by leaps and bounds in the next 20-30 years.

Hopefully this will come across in the hopeful spirit intended. Your attitude about your circumstances speak volumes to me. It appears you plan to live life more fully and consciously for the next 20-30 years or more. I suspect her life and everyone who knows here will be much fuller and more rewarding as a result of trying to live fully every day for 20-30 years.

I'd imagine we'd all put that much more into life and get so much more out of it if we thought we only had 20-30 years. And when medicine extends that lifespan, in the end it will be an incredibly full life for all concerned, more than most of us will enjoy. You will all appreciate what life has to offer years if not decades before many people do.

Thanks for sharing the story...