I am a very lucky man – I’ve got an amazing wife and am the father to three wonderful kids. Lylli was born on Halloween in 2008, Gracie was born November 2010 and although she only lived for 17 months, she will remain as much a part of this family as the rest of us, and Mickey Gray, our first son, was born in June of 2012. I’m not going to say that life has gone exactly as I would have wanted, but it is a good life and I am determined to make the best of it.
This blog is an attempt to document my quest to become a dad that my family can be proud of.
This blog is an attempt to document my quest to become a dad that my family can be proud of.
Monday, March 28, 2011
Very early on in the pregnancy of our daughter, we were told by doctors that there were several reasons why she would not make it. We were devastated. A month and a couple ultrasound visits later, miraculously, things changed a bit for the better. We elected to do some further testing. The doctors gave us 50% odds that she would be born, but due to the complexity of a heart condition, they were not optimistic about her making it long past birth. They also informed us that she had Down syndrome, which was not a problem to us, but was reason for them to feel that there was no surgical answer for her heart problem due to the fact that the three phase fix does not have a favorable outcome when performed on children with Down syndrome. Two months prior to her arrival, 85 people gathered in honor of our unborn daughter to do a local walk for Down syndrome. The day was filled with happiness and optimism mixed with fear about what was to come. It was a wonderful opportunity for us to celebrate our baby Grace regardless of the amount of time we'd have with her. Because the walk meant so much to us, we wanted to find the perfect phrase to put on t-shirts that we had made for the event. We came up with "Walking With Grace" -- This saying, to us, goes way beyond the walk that day. It's become a way to try to live our lives -- It means living life in the moment and being thankful for all we've got while we've got it -- A reminder to take the time to see the beauty in others and remember we all have our own pace - to not miss out on the wonderful opportunities in this life by worrying about things that are less important. The saying can remind you of someone you know or represent the person you want to be. The idea is to have its own personal meaning for everyone -- Something to serve as a reminder of how we want to follow the path in our own lives. We still don't know what Gracie's future holds, and are determined to do whatever we can to find a way to fix her, but we know that no matter what happens we will spend the rest of our lives "Walking with Grace".
Nobody is ever going to accuse me of being blessed with good timing. I am doing my best to try and stay optimistic about things, but I’ll admit, I’m being tested. I went downstairs a couple weeks ago to assess what needs to be done to get our basement bathroom in order – this will include removing sheetrock, etc due to some standing water we had as a result of condensation from the air conditioner not draining properly. This resulted in a little mold – not a lot, but obviously something that needs to be taken care of. While checking it out, I broke off a chunk of the sheetrock at the bottom and took a look – somewhere in between that and washing my hands, I must have itched my left eye - it became a little irritated. I’m sure I don’t have to remind most that know me of the eye issues I’ve had in the past – well guess what – they’re back!! It appears that the irritation was enough to start an infection in my eye -- I went to the doctor last Monday – he gave me a weeks worth of prednisone and referred me to the rheumatologist. Well today was the last day of the prednisone and I could barely drive into work. I so don’t want to go back to the rheumatologist but have to – He wanted me to stay on the drugs continuously and treat me as a rheumatoid patient – I am so nervous about that because the drugs make me feel so old and crummy – and as for timing, the bloating from the steroids should be just about at its peak on May 7th when we go for family pictures and attend the wonderful benefit for Gracie (more on that later) - we all know I don’t need help in the bloating category in the first place and admit after the effects kick in, I have a tough time leaving the house due to the embarrassment of what it does to my appearance. Last time this happened, I was poked and prodded for a countless number of tests – At that point, the only thing the doctor suggested was that I appear to be one of those unfortunate people that are prone to eye issues. One thing we know is that my body doesn’t react well to stress, which isn’t good because the stress of the eye issue is adding stress which adds to the eye issue -- Whatever it is, I pray that it goes away quickly – I feel so bad about adding any burden to Carrie in this already difficult time. Nobody needs me anymore irritable than I already am – A few times this weekend, I found myself not being as patient with Lylli as I should be with a fun loving two year old. I know I already ask so much from everybody and don’t feel like I give near as much in return, but I could use any extra prayers you can spare that this eye thing will subside so we can enjoy our precious family time together before Boston.
Tuesday, March 22, 2011
Monday, March 21, 2011
Friday, March 18, 2011
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
to learn more about them:
Posted by rdelaney at Friday, March 18, 2011
Tuesday, March 1, 2011
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”.
Posted by rdelaney at Tuesday, March 01, 2011