meet mason

29 May 2015

Mason Moyer and his family are the beneficiary for our 3rd Annual PA Golf Tournament on Friday July 31st. Please visit our website for more information on how you can get involved- either by sponsoring a hole, registering a team or donating an item for our raffle.

Here is Mason's story:

Mason was born on November 12,2012 to Robert and Stephanie Moyer of Milton. He was born with a heart condition called Tetrology of Fallot.  Mason had his first open heart surgery on February 7, 2013. He was unable to come off of heart/lung bypass and was placed on ECMO (Extracorpreal Membrane Oxygenation). This machine allows for the heart and lungs to rest while healing from open heart surgery.  On the Monday after his surgery, he was diagnosed with a pneumothorax and had a bronchoscopy performed. During this bronchoscopy, an air bubble was introduced into the ECMO machine; shut the machine down and Mason went into cardiac arrest. During this time Mason sustained a traumatic brain injury which would lead to a seizure disorder. Mason was transferred to Children’s Hospital of Philadelphia and was taken off of paralytic and sedation. This was when it was noticed that he was beginning to have seizures. He would be placed on an IV drug that helps with the pumping of the heart called Milrinone.  He would remain on this IV drug until the middle of April 2013. He would then have medication adjustments so that he would be able to live at home with the help of in home nursing. Mason has had recurrent hospital admissions for digoxin toxicity, the common flu, gastrostomy tube placements, and seizures. We visit the Children’s Hospital of Philadelphia monthly/bimonthly to follow up on Mason’s care.
During Mason’s hospitalization after his surgery, Mason’s mother Stephanie’s position at her job was terminated leaving their family with only one income from Robert, Mason’s dad.  Mason’s mother would continue to earn her bachelor’s degree in Technical Management with the Healthcare emphasis and would take on a job as a waitress at night to help out a little bit. In September of 2014, Mason’s dad Robert suffered from a heart attack while mowing their grass in their back yard. He had a 90% blockage in his right coronary artery. Before his heart attack he lived a healthy lifestyle and would be very active. His doctors contributed his heart attack to genetics and stress. He would still return to work 2 weeks after his stent placement because he knew that the family depended on his income to support them.
Mason has a twin sister, McKenna , who is absolutely healthy and tries to help her Mommy , Daddy and Mason’s nurses as much as possible. Mason has a good example of helping with milestones when it comes time to McKenna.

Mason currently is taking Physical therapy two times a week, speech therapy once a week (Mason is nonverbal due to brain injury), and occupational therapy once a week. He will start working with a medically needy head start program in the fall.

What to do when someone you love is grieving the most unimaginable...

13 May 2015

Since loosing Hayden, I have been asked over and over again how to help a grieving friend. What to do. What not to do. What to say/not to say. Anything on how to help them- because in the heartland as we call it, life is unfair, unbiased and quite honestly cruel. Babies and children in our heart community die way too frequently, which can be proven by the number of Grieving Hearts Care Packages we send out monthly. And heart moms- we are for the most part connected in some way and even though I may not know the bereaved mother, I know a friend of hers whose heart warrior is still here fighting and they want to know how best to help them.
I've also had complete strangers reach out asking for the same advice- as not all of the families are heart related, but all grieving an unimaginable loss. I have never been the friend of a bereaved mother and I never ever want to be. I imagine it very tough at times to be friends with a grieving mother and have said before how thankful I am for the circle of support I do have, both friends and family.
I've thought about writing this type of blog for awhile now, but specifically in the last few weeks I have been asked this questions several times and feel it is time to get it out there....

What to do when someone you love is grieving the most unimaginable loss in the world~

1. When the grief is fresh, only a few days to months in, what I found most helpful was having the constant indirect contact with no pressure to return it. One of my close friends from high school lives across the country and could not be here for Hayden's services. I know that was hard on her and every day for at least a month she sent me poems and quotes all about loving a child, loosing a child and being a mother. I also had friends who lived 20 miles away daily reach out simply letting me know I was on their mind, they were there if I needed them and reinforcing the 'no reply' needed rule. Another close friend practically sat in her car outside my house just waiting for the word that I needed her. And from the moment we opened our door, her and her husband were literally by our side and at our beck and call for weeks.
Be there for them either in the physical presence or in spirit. They may not want visitors or want to talk- don't take it personal. Getting out of bed is a task at that point so talking may be out of the question- but knowing you are thinking of them and are there for when they are ready is a huge.

2. Other helpful things that happened the first few days to months was with everyday tasks around the house- like cooking and cleaning. Eating was the last thing on my mind- but I had a husband and child to feed. Cooking felt like an added chore and I didn't want to use the small amount of energy I did have on that- thankfully I had the support to not have to worry about that for weeks. A friend sent fresh direct groceries- the kind of friend who know you so well they know what foods you and your toddler like. Friends started meal trains- where people from all over our area were dropping off homeade food every night- and people not in our area were ordering from local restaurants paying for the delivery for us. It was so incredible. Our neighbors sent huge trays of catered food over that lasted days. An at-home chef came one afternoon and prepared a weeks worth of food. Literally we were fed for weeks- months- and that was HUGE. So if you live close enough- or even if you don't- send a meal. She may not eat it, but somebody who lives with her or who comes to visit will.
Part two of this is cleaning. I again am blessed- after having Hayden a group of friends put money together and paid for a cleaning person for us. It was like a dream! We were in and out of the hospital so often or at appts. all day, but with a 'sick' child, still needed to find a way to have a clean house. Jackson caught on quickly and reminded anyone who entered to take off their shoes and wash their hands before approaching Hayden but the house still needed cleaned of any germs that were floating around. They paid for cleaning that entire summer and then when Hayden died, they continued to pay for it for a few more months. Think about that- I didnt have to clean my home or make a meal for months. I'm guessing all the moms out there are salivating right now- and let me tell you, I don't take those friendships for granted. I know how blessed I am and am still so thankful to this day that they took away the stress of cooking and cleaning during a time where I could barely hold my head above the table most days.

3. If the family has other children, send those kids a present. An activity book, set of legos, stuffed animal, ANYTHING to bring a smile to their face. If they are young like Jackson was, they have seen their mother literally collapse to the ground sobbing and aren't really 100% sure about whats going on. Jackson was told Hayden died, but several months, almost a year went by before he stopped asking when Hayden was coming back from heaven. My heart still breaks for Jackson when I think back to those first few months when I rarely could pull it together. It would come out of nowhere all the time and I would just collapse. Or sob so much in the car it got to the point months later I would sniffle from a sneeze and Jackson would ask if I was crying again. He saw me sad more times than not those first few months so the random deliveries that came in for him were such a blessing to both him and me. It was constant. Coloring books, playdoh, action figures, stuffed toys, bath toys, you name it- he got it. And every time something new would come, he would smile. He would play with it and he would be happy- which would make me smile.
I also received a plethora of memory gifts after Hayden died. Necklaces, plaques, angel or heart decorations, bracelets, garden flags, journals, books, etc. All so incredibly appreciated and also brought a smile to my face. So if you find something perfect for that grieving mama, that will surely help too.

4. Now that I am 2.5+ years into my grieving, quite possibly the best tip I can give you on helping your friend get through this is to never forget her, her child, and her pain from loosing that child. Not a holiday goes by where my body doesn't ache for him. And not just holidays- complete random days too. Soccer games, sunny days, building snowmen- anything I do with my family feels incomplete. Its gotten better with time and I don't fixate on it as much, but deep inside that pain is always there. I still wake up some mornings struggling to breathe without him. My point is- this loss is, what I am finding to be, a life- sentence and even though time passes and life goes on for everyone else, that grieving mama is still thick in it and probably will be for the rest of her life. She may find better ways at hiding it and coping with it- but it is still very much there. Please don't forget about her or her child as the years go by. She may not need you to cook her a meal, clean her home or send fun gifts for her other child, but what she will need is a friend- one who may not understand, but one who checks in on the holidays and the regular days just to ask- really ask- how are you?? Let them know you think of them and their child. Say their childs name. Hearing Hayden's name is truly like music to my ears. Hayden. Hayden. Hayden. I could say it over and over again. Be that person for your friend and say their childs name. Fantasize with them about what their child would look like or act like now. We spend most of our conversations as moms talking about our living children. Grieving moms want to talk about their angels, too.

In a nut shell- thats what got me through the past 2.5 years. The pain is literally unbearable at times- especially in the beginning. Breathing is difficult, getting out of bed seems impossible. But things like this helped make life somewhat manageable.

3.12.12 - 8.16.12

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