Teddy Bear Drive Success

(My apologies for such a delayed posting...life's been crazy, in a good way)

Our First Attempt at 

The OMS Teddy Bear Drive

was...

SUCCESSFUL!!

We were able to deliver 271 Teddy bears, toys, books and games to an extremely thankful U of M Mott Children's Hospital on October 22nd this year.  The staffer who helped us unload the toys said that at the time of our delivery their shelves were nearly bare.  Our main goal had been to spread awareness of OMS, but it was so neat to be able to spread some cheer and happiness to the kids at Mott as well.  This past week, we were at Oliver's infusion and one of the Child Life Specialist mentioned that they rely so much on donations for things like Play Doh (which has to be given to each chid every time for infection precautions), arts and crafts and giveaways.  They do not have a budget to "shop" for the play rooms.  As I, and I am sure others, assumed they did. 

We are so thankful to report that our friends and family also donated over $750 as well that will be pooled with donations from all over the world to be given in the form of grants to doctors studying OMS.  As of November 4th, over $30,000 has been collected in this year's effort.  AND, as of October 30th over 4000 toys have been donated to hospitals all over the US.  (The numbers are still coming in!)

Going into this, we had no idea what to expect or if we would do this again next year.  Now I know we will.  Only, we will be doing our toy drive early next year.  While the National OMS Teddy Bear drive begins in annually in October, we will begin our collection in July.  After talking with the hospital staff, they are most in need in the summer months when seasonal donations run out (Nov-Jan being their peak season).  I will also collaborate to find out their specific needs and most requested items.  

We are always on the look out for corporate partnerships as well!

Again, a HUGE THANK YOU from our family and the OMS community to you and yours!!

I was asked….

Yesterday an old friend reached out and asked me for any help in coping with the significant illness of a little one.  Her 26 month old nephew (we will call him julio) has been diagnosed with cancer.  While there is no silver bullet- no perfect solution to help her sister and brother-in-law, she was asking for my input.  I thought maybe my words might help someone else, too.  So, I'm responding in a blog…which already has some details changed to protect the privacy of my friend's family.  This family has yet to share the news of their baby's diagnosis with anyone outside of their family…please don't guess.  You'll never figure it out and that's why I feel comfortable responding in a blog.

Understand.
From the perspective of Julio's parents, I can understand that they do not want to communicate directly with each member of their family.  It is a great strategy to have one person that receives all the shareable details and is authorized to share with the individuals that have been "okayed" by the parents.  In the early days of figuring out what was causing Ollie's symptoms we share with our immediate family and a handful of close friends.  We chose to do this because the thing we wanted first and foremost was their faith-filled, confident prayers that Oliver was already healed from the top of his head to the bottom of his toes and everywhere in between.  That phrase can still be heard- 9 months later- whenever our family and friends pray for him.  We are so thankful we made that choice initially and later asked for that SPECIFIC prayer from our vast network of praying friends.  We believe the action of being in agreement amplifies the effectiveness of this essential communication with our God.  We chose never to pray from a standpoint of fear.  We would NOT let fear in. 
^^^^^^^
So, my best advice on that topic, give Julio's parents some grace.  Understand that the last thing they want to do right now is re-hash the details of every bedside report, every impending test.  It is more than they can process, likely.  Ask questions through the family designate or do your own research, which leads to my next point…

Reasearch.
But don't share your opinion until asked.
Oliver's experience was with a disease that is extremely rare.  No one in our family had any previous knowledge of the causes, impacts, symptoms, treatments, etc.  Most of our family members did a "brand name" search and read as much as they could.  I think it only served to freak them out, but it did give them an idea of what we were fighting without us having to detail it over and over again.
^^^^^^
In this case, a cancer diagnosis is too broad for any significant research.  I would find out what you can about the type and go to town online.  Look for alternative or assistive therapies that will improve his outcome.  Again, don't share until asked…or do so with impeccable timing, skill and respect.  If not, the parents will likely be unreceptive and potentially offended.  However, my dear friend was able to greatly improve her husband's outcome (as stated by his world-reknown doctor at the James) through different natural enhancements to his treatment-  mainly diet, but also hyperbaric treatment, supplements and (eek) coffee enemas.  I'm not suggesting these therapies for anyone in particular- just using them as an illustration of some of the things that hospitals probably will not suggest, but may be helpful.  In any case, it is good to have the knowledge for when the family is ready to listen.  

Long distance help.
Not much can be done when the family isn't open to visits, phone calls, etc.  The biggest blessing I can think of is mail….send a "picture of health" to focus on and a reminder that his health will be fully restored.  Maybe send gift cards for meals, iTunes, activities to keep Julio from getting to restless (if he's up for the activity-- if he isn't today, he will be in the future). When and if the need arises, helping to organize fundraisers can be a huge help. Once a specific diagnosis is made, look into support groups for that type of cancer and ask those parents what made the biggest impact for them.  


Connect.
The following are tibits of advice from other OMS parents and grandparents…

This is more for the parents than those wanting to help, but a tip from one of my OMS mommy buddies:  
"getting a "carebridge" account I wish I had known about them when ****** was sick. I could have used all the positive comments that can be posted and I would not have had to call everyone to update them they could have just gone to the site and seen the update.

An OMS grandma shared these thoughts:
When ***** was in the hospital so much, we had a friend that brought dinner several times. She also brought real plates, bowls, etc. for us to keep at the hospital. It made it more "home". While many people feel funny giving cash, it's still the best. You can't anticipate needs...gas, food, heck, washing detergent...and cash will fill the need easier and quicker. We had a bank account set up with one person "at home" that could access the account and then me at the hospital. Anyone that wanted to give, all they needed was *****'s name at the bank or give to the other person at home. Since we were miles away, that helped so much. What would help with meals is a schedule where they wouldn't have 6 different meals on one day and not enough storage to freeze. One person to coordinate meals would help. One contact to be direct contact with the parents is nice. That eliminates them being bombarded with calls. The contact person can keep a notebook of who has called, their message, and they also can write down what news the parents want to share. That way, the "news" stays the same and doesn't get distorted. Have an "errand" group. Someone that can be in charge of feeling free to call and ask "can you go get..." Another thing is someone to have a house key. To turn the heat/air up when they get on the way home from the hospital. Feed pets, check mail and put it inside, someone to check on the house so it doesn't look deserted. I know this is a long post, but we spent a lot of time 2 hours away from home, and these things helped so much!

From other OMS moms:
Tell friends and family to send well wishes by email, text, Facebook when they think of it. These seemingly simple messages of love got me through some rough times.

I think cleaning help, babysitting so parents can spend time alone, or with unaffected child, dinners delivered...anything that helps relieve a little of the pressure. Unfortunately, distance is sometimes only overcome by paying someone else to do for a loved one that which you would do if you were closer by. Perhaps if they are members of a faith group, church, synagogue, offering to organize volunteers? It is really so tough. I'd like to say I don't know how we did it. Part of me says, we didn't, as my marriage didn't survive the challenge of OMS, although it wasn't on the firmest foundation to start with.

Help with food would be great as would cleaning- even when I was just sick at home not hospitalized. 


And from other non-OMS moms who have all had sick kiddos or who have themselves faced challenging times:

A friend showing up unexpected with a gift for my then 1 1/2 year old. I was exhausted, scared and worried and knowing someone was thinking of my baby and myself just brought me to happy tears as well as seeing a friendly and familiar face!

Called instead of just dropping in. And brought me magazines to read.

Wish meals had been provided upon return home. (With a full time job, 2 kids, and seriously ill husband)  Oh, after I had my first baby, one of my L and D nurses went to the cafeteria and brought a huge tray of food...chicken fingers, fries, salad, cake, etc...so that I could get to the NICU faster to see my baby

 would say the way I was treated, in the sense of are we making this patient feel safe, comfortable and at ease given the reason they are here? When I was young I had surgery on my eye. Maybe it was because I was a child but everyone was so kind and good to me. It put me at ease and I never felt scared. On the flip side, when I had *****, everything went so fast. But I found that the people that took care of me were a little cold. No one was sensitive or warm given the fact that I just had a baby for the first time. It made me uncomfortable. Like I was just another person. I couldn't wait to leave. I think it's important to make your patients feel a little at home since they are having to away from their own.

Church provided us with meals and people checked in with us. It was nice. Also maybe someone close by able to provide a shower! Childrens hosp for us is an hour away and frankly I never left the room for 4 days. I had a friend in the city offer her place for a shower which was awesome. Also, my boss had given me her paid time off hours so that my paycheck would be the same since I had exhausted my days on reeds medical issues. Never pressured me or made me feel guilty about not being at work and just asked me to pay it forward. It would asp be nice for someone to check in about maybe needing stuff from target because even though I had packed bags I would forget or run out of stuff.  Also new toys to keep a toddler busy was awesome too. My mom brought an entire package of new stuff (toys, books, stickers) to help occupy *****.

I know my family greatly appreciated meals. For when they were receiving care out of state, so many people wanted to do something so my parents just asked for donations to go to the Ronald McDonald house to help house future families. people were happy to help a cause that was helping us.  (Taylor and I agree wholeheartedly with this one.  The RMH in Springfield, IL has been a haven for us when at the specialist…to the point that Ollie wants to visit there right now).

he stylist who did my hair came to the hospital and washed/styled my hair...made me feel human...and so grateful. Also...just having friends drop off meals, books, something personal like lotion...or ask what errands they could run. For the last couple of my friends who have had serious surgery/accidents I sent a box of paperbacks that I had already read and just asked that they do the same for someone else when they had finished them.

I had 15 neuro surgeries in 1 yr after I had *****.  It was so rough being really sick n having an infant n young child at hm. My family telling me the only thing I had to worry about was my self n getting better. While my husband n parents all pitched in. That was the best advice I every received it was my dad who said it as he was at home watching the girls changing diapers which he never had done. I couldn't have done it with out my family!

So, I'm not sure if this helped at all.  I truly hope that it did.  I know in the beginning it took us about a week to really be open to other people helping us…in away I think we felt like it would all be a mistake and we'd wake up the next morning with a fully functioning child.  (Praise God that was the truth within the month!!).  Until the family is willing to accept help, be thankful that the most powerful thing you can do is pray for all involved.  And keep on doing it even after they allow you to do other things. 

"And the prayer offered in faith will make the sick person well; the Lord will raise him up…the prayer of a righteous man is powerful and effective." James 5:15-16.