SIBLING SUPPORT NETWORK: learn how to join here!

I introduced this idea on Facebook to our followers as well as most of my support groups and it was met with an overwhelming response. So I made an example video (with a very tired child who really wanted to go to bed) and I managed to forget to ask her some of the questions I wanted to.

Here’s what you need to do:

1. Video your sibling talking about what its like to have a child in the family with xyz condition. It can be ANY special need – it is not limited to Cerebral Palsy or Epilepsy or any condition we have. Just keep it clean – no foul language, no racist remarks, no derrogatory terms please. This is about support. And please don’t edit the videos with graphics, music, slideshows. Just a simple vlog type video so they can focus on what they want to say.  

 Tips:

If you have a younger child (like us) it might be better to prompt them with questions. I don’t know about you but if I let my daughter take over she will tell you about Power Rangers and Justice League right into My Little Pony and what she ate for lunch.

An older child can make their own video and even explain the conditions or what that condition means to their sibling since most conditions come in various severities. They need less prompting of course. And the videos don’t have to be happy sunshiny goodness. Being a sibling is hard and it sucks sometimes. Let them have a voice – just make sure they keep it clean.

Try not to make it incredibly long – you have to stick to YouTube guidelines. As long as it fits – its awesome!

I know for some that have many siblings it might be a lot but please try to do only one sibling per video so that they can have their voice.

ONLY SHARE WHAT YOU WANT TO SHARE AS FAR AS NAMES, LOCATION AND SUCH – REMEMBER NOT TO GIVE OUT ANY INFORMATION THAT WOULD CAUSE YOU TO BE A TARGET FOR CRIMINALS. STAY ONLINE SAFE.

2. Upload it to YouTube under your own account. (You might have to create one). When you upload it make sure you title it with the following:

Sibling Support Network: (**CONDITIONS**) 

see example video posted below.

Please put in the comments section something like Sister and Age so that if someone is looking for someone a similar age they can find it. If you would like you can put location but that is entirely up to you.

3. Save and share! Spread the word! And when your child wants to find someone that is going through what they are dealing with – the titles will allow you to search easily and find what you are looking for.

Any questions or comments please post in the comments section.

 

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Happy Memorial Day 2013!

As Navy veterans, and Diva being a full blown Navy Brat – today we are sending our prayers to the families that have lost their brave service members and those who are serving currently.

Superman and Diva have several family members that have served or are currently serving in the US Military:

Uncle – Veteran, US Army

Great Grandfather – Veteran, US Navy (WWII)

Uncle – Veteran, US Navy

Aunt – Veteran, US Navy

Mom and Dad – Veterans, US Navy

Aunt – Active Duty, US Navy

And our memories are with those who lost their lives providing us the freedoms we enjoy every day.

Today we celebrate and we mourn because freedom isn’t free.

Thank A Vet today!

Exciting News!

From the first moment I looked into his sweet face, while I held a tiny hand that was so small it was translucent, a body that was not much larger than my hand, I told my Superman that as long as he could fight I would fight for him.  For a child that was never supposed to make it a week much less out of the hospital, those were very brave words in the first hours. But I could feel a determination in him. We knew the damage was extensive, so I knew eventually we would have to try drastic measures. To give him a chance, a better chance.

So after much soul searching, research, and prayer – we found our drastic measure that shows the most hope and chance.

We applied to the Stem Cell Institute located in Panama City, Panama. We received an acceptance letter! I have seen miracles happen from the treatments received there.

Photo credit: Wikipedia

Photo credit: Wikipedia

As much as a parent wants to believe things can be completely healed, in Superman’s case, we know that is not the case. Cerebral Palsy is a condition, not a disease so there is technically not a cure, but progress can bring you out of the condition.  Any progress for him can open the doors to so much more. I have seen seizures slow to almost nothing or even completely stop altogether. Vision improvement that allows the child to see enough to be able to make gross and fine motor skill improvements.

A Very Special Needs Resource

Babies learn to smile by watching others smile at them. Mimicking. Of course, that is not to say that blind people cannot learn to smile, however it happens more gradually than a typical developing baby. By increasing his chances of vision, by improving his cortical vision impairment, we have the chance to see him smile at us. At his sister. That seems so small, I know. In our world it’s everything. If he can see a toy, he might try to grab it. If he can see the handles on his sippy cup he might reach to hold it. If he can see the dog two feet from him, he might crawl to pet it.

We believe that stem cells can open the doors to a whole new life for him. As I promised him in that tiny isolette that as long as he can fight, I will fight.

So today we are asking all of you to pray for us, and help if you can to fight for Superman. He might not be able to leap tall buildings in a single bound… but one day he will take that first step and try. I have faith.

DISCLAIMER: I know SCT is controversial at best – just know that these are NOT embryonic stem cells but umbilical cord cells from carefully screened umbilical cord donations. 

We will be doing several fundraisers over the coming months – we need to raise $20000 by August 1, 2013. We are just hoping you will all help us promote them, and pray that we can meet our goal and get him to Panama! I will have an events list once I figure out how to set it up in WordPress.

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If you are interested in reading about other kids who have done Stem Cell Therapy – you can check out the following blogs and Facebook pages!

Emerson “Emmy”

www.facebook.com/AnAppealforEmmy

Hudsyn

www.facebook.com/HopeForHudsyn

 Andrew 

www.facebook.com/AndrewsAngels

Moxie

www.facebook.com/MiraclesForMoxie

Kenny

www.facebook.com/groups/484435644917596

Shane
www.facebook.com/pages/Part-of-the-Movement/391511240956408

Mackenzie
www.makenziesmiracle.org/

Ethan Radtke

http://ethanwalks.blogspot.com/

I will add more as I become aware of more children that have done Stem Cell Therapy.

We Now Return to Regularly Scheduled Programming

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We are back! I took a hiatus to get some spring cleaning done – and to catch up on paperwork, but we are back and I have several great informational posts in the works as well as some exciting news to report this week!

Stay tuned and remember to like us on Facebook to catch ALL of our exciting updates including photos and videos that don’t always make it to the blog! 

Living With Superman Facebook Page

Come like us!!

 

Rewind: Finding Faith

I wrote this piece back in October 2012, my son had been home from the hospital for a few months and we had several admissions since being home. A month prior to this, an attending told us our son was going to ‘crash’ and because of his brain damage his life wasn’t worth saving. A month later I wrote this post. After having a baby at 27 weeks and watching him fight for every breath, every day, it will make you question life. But through this whole journey I have found faith. Faith I never knew I had. I have been in church almost all my life, and never had I felt what I feel now after living with Superman for over a year. Watching him is truly like watching a flower bloom. But not in elapsed time. It’s like watching every single second of the unfolding – in slow motion. Getting every painstaking detail. But slow as it may seem, you always know the end result will be just beautiful – and although the blooming happens so slow you might not even realize something is happening, but when you look back and you see how far you have come – THAT is when the amazement will set in. And it will be glorious!

I have been thinking alot about faith lately. Its not something I feel I really know alot about.

Faith is so often a word that tossed around by so many about everything.

Sit down just pray and have faith. I don’t think that’s really how it works.

I never thought I would be sitting here, on a cold rainy night, writing about faith, religion, or anything of the sort.

It’s not really me. But its amazing what can happen when things get so bad in your life you don’t see a way out.

I think so often we take for granted the situations in our life, good or bad.

I have been listening to this song called “What Faith Can Do” by a band named Kutlass.

Even in the bad, it gives us an opportunity to rise above the situation, do what we can, then at that point we have faith that it will all work out.

Too often, the sit back and pray crowd convinces us that if its “God’s will it will just happen. It’s his plan”.

But I think God gives us the tools to sit down and pray, listen then go and do. And once you have done everything you can to the best of your ability, then faith takes over and you watch the seeds of your effort blossom. It might not be exactly as you pictured, or what you wanted. But faith comes into play again, believing that even though it wasn’t what you prayed for, maybe its what you need in this moment.

So while you are on the journey, have faith that you will find your joy. It might not be the joy you were seeking in the way you thought it would come, but over time, you will realize that maybe your vision has changed and its the joy you really needed all along.

That’s what faith can do.

Happy Mother’s Day

Last year I spent the day of my Mother’s Day at home with my daughter and the night I tried to stay in the NICU with my son – I thought I could try to feed him for the first time – having the collective power of all moms everywhere behind me. I put the bottle in his mouth and he turned blue. Then his temperature dropped and I had to put him back in the isolette. The nurses did give me this beautiful card. It was all I could do to run out of the NICU before I completely lost it.

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I came home and made the most beautiful dutch babies filled with fruit. I bake when I am sad.

 

This year was much better. I spent it at home with all of my babies. No hospital trips, just very hectic shopping trips! 

I hope you all had a very blessed Mother’s Day. And just think – if it was really awful, next year it will be better. 

And hugs to all of the moms celebrating their Mother’s Day in the NICU.