What would you do?

[nkbapbt]

So we have been approached by a local film company who got our name and story from the NICU where Lakai was born. They want to do a documentary on Lakai's birth, life in the NICU and now...as the positive side of IVH outcomes and there will be another baby with the exact same issues Lakai had in the NICU and the same type of bleed who will be the negative outcome Im torn about doing it as I am scared that we will not be allowed to express that our outcome is not the norm and we will end up giving false hope by mistake.

I really would not want to do that. I want them to do an honest look at our lives and paint IVH for what it really is....not all gloom and doom of course, but not always positive like us.

Im also extremely nervous about having film crews around Lakai due to germs. They would be in our home numerous times over the next year.

We wouldn't be paid, which is totally fine...but they are going to make a donation to the Lucky Lakai Foundation and give us X amount of copies of the movie when its completed to give out how we see fit. They will also feature the foundation in the movie...so that's AMAZING exposure.

Im torn...what would you do?

Plus I cant lie Im not very good at speaking in public, Im very shy and sometimes tend to muddle my words when Im nervous. This would not make for a very good interview or message! LOL But that being said Ive talked to SO many people in public about pit bulls and BSL that I think because it's so near and dear to my heart I could pull it off.

 

[Laura2919]

I think you need to weigh up the pro's and con's and then I think you will find your answer.

If you dont want Lakai getting ill then maybe its not a good idea but on the plus side if you want people to see your story you have an amazing oppourtunity.

I cant answer that question because I havent been in your position..

Do hope you find an answer soon hun x

 

[Vickie]

wow Nic that is a tough choice. I think it would be great if you could share Lakai's story, because it really is an amazing story. Though I can see why you'd be worried about it creating false hope in others as his outcome isn't the norm.

 

[embojet]

Its definately a toughie. Its an amazing opportunity for the foundation like you say. If it was me I think maybe I would go for it. I would lay down some ground rules for the film crew. If it became too much for LO then I would out a stop to it straight away. If I didnt do it I would always think what if....

 

[AP]

i would say do it. Until i met you, all the stories i read were negative and let me down. You know alex has the same grade IVH and you give me hope, u dunno what it means to me.

 

[bumpsmum]

it sounds like a good opportunity to get the exposure you need and like Sandi says the very rare positive outcomes. I agree maybe set some ground rules down in paper stating that you have a degree of control over what is filmed and a chance to put across how lucky Lakai has been making it a true account. Similarly ask the crew to limit the amount of people coming and going and that they will agree to stringent infection control measures etc to limit germs etc. Will you have the opportunity to meet the other family Id imagine that would be really hard and emotionally tiring xx

 

[AP]

i don't care if i live in false hope hun. If our outcome isn't as good as yours at least i can say i kept the faith and your story held me up. At least I can say I didnt spend the first years of my life down and broken because i expected the worst.

I wish you knew how i felt that day when you told me on here Lakai has the same as Alex. You took a huge cloud away from me

 

[nkbapbt]

Awe thank you Sandy I have been able to talk to the film director a little more and it sounds like she totally gets the germ thing, and they have enough of a crew "pool" that they can pull from if anyone is sick. Im still not sure though. Its going to be very intrusive on our lives, especially Lakai's. I think we need more time to think about it. The director actually had a 24 weeker who passed away. =(

I would get to meet the other family, which will be so tough. I am so not sure about that AT ALL. Not only just seeing their baby but also having them see Lakai. I cant imagine that it will be any easier for them though, if not tougher.

 

[goddess25]

Its going to be a tough decision on the good side its nice to share your story and give parents some hope and it may help some parents deal with there decisions in the hospital in terms of treatment... and the exposure that the foundation will get is huge.

On the downside everything you mentioned is totally justified, do you want to tell such a personal story to everyone, do you want Lakai exposed to that? I agree in certain circumstances that giving false hope is bad.. and we all know that unfortunately Lakai is not the norm in regards to all that he has faced.

All you can do is talk it over with the family, weigh up the pros and cons and make a decision from there. How does Kyle feel about it? In regards to your public speaking you know alot now about the health care system in regards to preemies and as you say its such a close subject to your heart that I am sure you would be able to talk about it very articulately... i am sure you would be awesome.

I dont envy your decision but I am sure you will make the right one in the end for you, your family and Lakai. Good Luck!

 

[Foogirl]

I would do it. Hope is what people thrive on. I'm not a believer in "false" hope. I think your story will be so inspirational to many people. You can always make sure whatever you are talking about, you indicate that you know not everyone has as positive an outcome.

And don't worry about not being good at speaking in public - that's what the editor is for!

 

[Dona]

Hey hun, I would say go for it. Set your ground rules and go! I'm behind you what ever decision you make though. x

 

[nkbapbt]

Thank you ladies. So Ive made a very clear list of gentle demands...and requests. Nothing dramatic. Just like basic things, no sickies, no forced filming, if we can't do it...we cant do it. That we reserve the right to quit at any time if we feel we aren't getting OUR message across but we will also be willing to get their point across as long as it melds with ours.

Im all for giving hope, I just dont want anyone watching and thinking or feeling "why wasn't that me" "why did my child not deserve that outcome". I know I cannot control that, but I need to make sure I do not create it either. Does that make sense?

I want it clear that we know our outcome isn't typical but that being said, we dont want people throwing in the towel on their babies just because the drs give them the same talk we got...not everything in life is as cut and dry as stats.

And there is PLENTY they can do after their babies come home to help their baby's outcomes. Beyond OT and therapies.

I think I can do the public speaking thing, I can handle myself fairly well when Im passionate about things, even when its talking about heated issues (not this but banning pit bulls..) and still make myself heard and come across half smart!!

I will have to talk to Wobs and see if its ok to mention this forum and have a link posted in the credits. Because I could not have survived with out this place and you ladies. It must be said some where in the film! =) Not sucking up!

I just broke my no TV other than Baby E videos and let Lakai watch Thomas the Train.....gah whats next?!

 

[Vickie]

Nic I hope they agree to your demands.

 

[Marleysgirl]

I'm glad you decided to go for this.

We were being filmed for BBC3 when I was pregnant, and I was nervous as anything about "public speaking", but they were really good about getting me to repeat things if I was unclear and asking questions in different ways if the point wasn't getting across. They took about 2 full days of footage, which I know will get edited down to just a few minutes.

The crew were filming us at the time when we got the shock news that Andrew would have to come out very prematurely, and they gave us the option at that point of withdrawing from the programme. But we decided to continue, not knowing what the outcome would be, because we wanted to have as much film footage as possible of our wee boy. They've given us some of the raw footage to keep for his memory box.

As it turns out, we're going to be the tear-jerker of the programme, mainly because of our happy ending!

 

[lizziedripping]

Personally it wouldn't be for us, because introducing germs into Evie's environment was a huge deal for us in her first 2yrs, but it really is a personal choice thing.

I did one radio interview when Evie was in intensive care, and after that was "hounded" by all the TV channels/radio stations for months wanting my thoughts on every high profile baby story around at the time. I was tempted, but in the end refused because I didn't know where it would all end.

If you go for it, just ensure it's on your terms, and always keeping your baby's best interests at heart. The media is a funny thing - once you invite them in, it's hard to stick the brakes on.

Good luck x

 

[grumpymoo]

Well I hope you get what you have asked for (your wish list I mean!), I think its ever so brave of you and its certainly a wonderful story to tell!

Marleysgirl, when does your program go out?

 

[nkbapbt]

I think the germ thing is a concern...however, there are going to be always people coming and going from the house that I cannot fully control their germs, such as OT's and people like that.

The film crew will be only 3-4 people actually. So its not that bad. They have agreed to wash their hands (clearly!), bring a change of clothing or wear coverall's that will be washed and kept here with me. And not come if they are sick or have ill family/household members.

I dont think I could ask for much better than that really. I mean you don't get even close to that when you say take your baby to the doctor's office, shopping center or where ever you may take them.

=)

And these were ALL things that they suggested! Not even my rules!