Lylli Loves her pups (from last spring)

last spring

3/21 - Happy World Down Syndrome Day

 

 

www.hedingrowingfamily.blogspot.com/

On the first day of our first stay at the Children's hospital, as I walked into the Ronald McDonald house – I'm sure I looked very scared.  I was greeted by a friendly guy that obviously new his way around.  He and his wife had given birth to beautiful twin girls at the beginning of August.  During our stay we met his wonderful wife and found ourselves having several spaghetti dinners together.  I've thought to myself many times throughout our stays there that Scott and Amanda Hedin are such a great example of how to handle having kids in the hospital with class.  They were so comforting to talk to as we went through Gracie's surgeries – It meant so much to have others to talk to.  They even gave Gracie a hand knitted Santa hat made from the extra yarn used to create the Santa hats that were made for their girls Christmas pictures.  When we went back again for our most recent stay, I was glad to see them, but so sorry to see that they were still there.  One of their girls has come home, but their other daughter is still in the hospital and facing many challenges.  I'm not going to say that I can tell you exactly how they feel, but as the father of a daughter that is also in the middle of a fight for her life, I can tell you that it is a very scary, confusing time and that prayers and positive energy help a lot.  I ask that you keep the Hedin family in your prayers – I also, cannot tell you how much the meal train helped that was created for us over our stay – This wonderful family lives right in Blaine, so I ask that you consider joining their meal train as well.  They truly were such a large part of our stay at Children's.

A link to the meal train is below    

http://www.mealtrain.com/?id=mn1fjt5k4a1t

to learn more about them:

http://www.hedingrowingfamily.blogspot.com/ 

snow bunnies

 

Take a Moment

Throughout life - Every single person has an awkward stage or something about themselves that they are insecure about.  Most of the time these things are outside of our control.  Take a moment and think about a time in your life when you felt that there was nothing that you could do to defend yourself against a person or event that pointed out that thing that you are most self conscious about.  Remember that moment when someone maliciously pointed out your insecurities in front of a group of people and they all laughed?  You tried to fight back, but there was nothing you could do to defend yourself.    Do you remember a time when someone casually said something without thinking that it may hurt you, but it did?  Maybe you’re not self conscious about it or maybe you’re just really good at pretending not to be – maybe there is something about you that is just different – many things that make people unique are the same things that are pointed out and used as a weapon against them when they are younger.  No matter what it is that makes you different, hopefully you get to a point in your life where you can celebrate it.    I’m not saying that if you have big ears or are a minority or are overweight or if you stutter or are gay or all of the above that you should feel bad about it -- everybody is unique – My hope is that that while you were reading this, for just a second you were reminded of a time in your life that you felt like you couldn’t defend yourself – not a good feeling is it?  Now – look at a picture of my daughter.  A little girl that has spent 51 of her 100 days on Earth in the hospital fighting for her life – A person that has taught me more in her three months about life than anybody in my 38 years.  Do you see her big beautiful brown eyes?  Can you imagine how important and valuable this little girl is to me and my family?  Did I mention she has Down syndrome?  Once again, do you remember that feeling you had when you couldn’t defend yourself?  Think about that next time you decide it’s OK to use the word “Retard”.

Some Quality Time

Last night I went straight to the hospital after work as I do every night.  Carrie had left a while earlier to get Lylli and to pick up some clothes, etc. from the house because we were fortunate enough to get a room again at the in-hospital Ronald McDonald House for a couple nights.  When I got up to Gracie’s room, she was laying in her bed staring at her mobile -- she looked so comfortable and content.  For the first time in 16 days, it was nice to see that she didn’t seem completely drugged and out of it, it was also the first time in as many days ,that I was able to take her out of her bed and hold her.  It was very nice – just Gracie and I alone in her room.  We rocked in the chair and talked about her stay in the hospital and her upcoming trip to Boston.   Ok, I was pretty much the only one talking (although she was pretty chatty yesterday) -  like writing in this blog, talking to Gracie about what’s going on is somewhat therapeutic for me.  I very much appreciate the support from family and friends, but sometimes get overwhelmed with everything  and just want a little time alone with her to tell her how proud I am of her and to thank her for helping me realize I want to become a better man.   After about an hour of sitting, talking,  and singing to her, my phone notified me that my other girls had arrived.  I rock for a few more minutes until I could make eye contact with one of the nurses and wave her into the room to help me maneuver Gracie’s tubes and wires and get her back into bed.  I stood by her bedside for a minute or two as her eyes got heavy.

After I was convinced Gracie was once again comfortable, I went down to the Ronald McDonald house.  I opened the front door and immediately saw the girls, who had entered just before me.  Lylli assumed that I was in there already and was running ahead of her mother scanning the room for her daddy – I heard her tell Carrie that she didn’t see me anywhere.  Never assuming I would have gotten there after them, it took awhile, but eventually she turned and looked behind her and saw me -- she ran across the room yelling “Daddy!!!” and jumped into my arms.  Between my time with Gracie and the greeting I got from Lylli – For a short period of time, I forgot about any stress I had in my life.