Tuesday, July 19, 2016


The end of June and into July, Becca got to go on a wonderful vacation to Alaska with her Nana and Poppop and her cousins. Below is a photo of the dog sledding. They got to do some once in a life time things as well.  Ian asked for a vacation since Becca was getting one, well how does Ian get a vacation, he goes to the Gilchrist hotel. So today he was dropped off for his vacation. Below you can see him tucked in and watching a movie. By each of them getting their own vacations, they are both also getting some mommy and daddy time. Treasure, Dream, Live!

Wednesday, July 13, 2016

Pulmonary Appointment

Every 6 months Ian gets checked out by his pulmonary doctor. You never know what will happen, although sometimes I have my feelings about it. Today was a fantastic appointment. Dr. S was extremely happy with Ian and what she saw. His CO2 level was 44 (normal is 35-45). His O2 was 100. Very stable on the HME. He has been off of antibiotics for about 5 months and doing well. Dr. S made no changes to Ian's treatment plan or his vent settings. And best of all,


Smiles all around after the appointment. We go back in 6 months.

Tuesday, July 12, 2016

Migraine vs Pain

I am a frequent headache/migraine suffer, and last night was just another one of those times. As I laid in bed trying to fall asleep, my mind wandered through the pain. It came on and off, sometimes slight pain others horrible. All I wanted was for it to go away...for sleep to come over me. It got me to think about Ian and his pain. How much pain is he in regularly? How does he deal with it? My heart hurt when I thought about it...I felt like my pain was nothing compared to what he goes through on a daily basis.

According to 
A migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can cause significant pain for hours to days and can be so severe that the pain is disabling.

According to
Pain in its most benign form warns us that something isn't quite right, that we should take medicine or see a doctor. At its worst, however, pain robs us of our productivity, our well-being, and, for many of us suffering from extended illness, our very lives. Pain is a complex perception that differs enormously among individual patients, even those who appear to have identical injuries or illnesses.

One of the biggest struggles for us with Ian at times is pain management. When I get a headache/migraine, I know my medicine and sleep will help it to feel better and eventually go away. For Ian, depending on the day, depends on what helps him to feel better, I don't think the pain ever goes away. I believe he has always and always will be in some kind of pain. Sometimes it is as easy as giving him one dose of pain medicine while other times it takes multiple doses of multiple pain medicines. And getting him to take a nap, well that is another challenge, unless its medicine induced. 

I am not sure where or why I am writing this except for the realization that the next time I have a headache/migraine, I will try to remember my pain is minimal compared to what my little man goes through on a daily basis. I will also try to remember the next time Ian's in pain, his pain threshold is probably relatively high and work through it with him. 

Tuesday, July 5, 2016

Bereaved Parents Awareness Month

I don't think you have to have lost your child in order to be a bereaved parent. I think if you are dealing with a chronic terminal illness, it comes in stages go through periods of being okay and then periods of bereavement. It can be over a small thing such as looking back over this blog, seeing how Ian was as an infant, toddler, young child and where were are now. Well I guess that is not such a small thing...even though we try to make the best of every situation and look for the positive in everything, that does not mean we are always able to do so. We have been dealing with Ian's chronic terminal illness for so long that we have already been through different stages of grief (and they come and go over time)...waiting for the other shoe to drop...waiting for the next illness and the unknown and will that one be the ONE. I guess what I am trying to say is that even though we don't fit into the true definition of bereaved parents, we already bereaved parents.

from the TODAY website

What do you say to a mom or dad who has suffered the ultimate heartbreak?

July is BEREAVED PARENTS AWARENESS MONTH, a project started by Peter and Deb Kulkkula in honor of families trying to cope after the death of a child. The Massachusetts couple struggled through the deaths of their two adults sons. 

As a mental health professional and twice-bereaved parent, Dr. Gordon Livingston knows the issue all too well. The Columbia, Maryland, psychiatrist lost his 23-year old son Andrew to suicide in the early '90s. Just over a year later, his 6-year old son Lucas died from leukemia.

Livingston watched as friends and acquaintances struggled to address him. When faced with such deep sorrow, people will often blurt out well-meaning but awkward, insensitive phrases like "He's in a better place," "Everything happens for a reason," or "You're lucky to have other children," he said.

"No one knows how to react. There's nothing they can do so they come up with these meaningless platitudes....that are either dishonest or carry with them no consolation whatever," Livingston told TODAY Parents.

Livingston and Deb Kulkkula suggested these four things to say or do for a grieving parent:

1. "Do you want to talk?"
Don't shy away and don't keep your distance.

"What works is your presence. There's no set of words that will work each time, but being there for someone in a supportive way is what provides the most consolation," Livingston said.

Bereaved parents need to be able to talk, so look for ways to open up the conversation and give the mom or dad a chance to speak, Kulkkula said. Check on them regularly so that if they want to talk, they can.

2. "I remember the time when..."
Don't avoid mentioning the child who has passed away, Livingston said. In fact, the silence of people not mentioning her late son's name can be "deafening," a St. Louis mom wrote in a powerful essay for Bereaved Parents of the USA. Like many parents who have lost a child, she craved hearing his name and stories about him.

Kulkkula and her husband loved it when people shared anecdotes about their late son.

"With most people, it's their own discomfort that stops them from talking about it with family. So unless a parent tells you, 'I can't talk about him or her now,' please talk about their children," she said.

3. "I gave to his memorial fund."
Bereaved parents are often afraid their children will be forgotten, Livingston said. One of his friends set up a memorial fund for Lucas and each year on the anniversary of the boy's death, there's a contribution.

"That sense of continuing and remembrance goes a long way," he noted.

Kulkkula found it comforting when her church started a scholarship fund in memory of her late son.  

4. "I mowed the lawn"
An open-ended offer--such as "I'll do anything, just let me know"--likely won't work because the bereaved person won't want to ask for help. Kulkkula said, or might not even know what they need. Rather, make it more specific, such as "I'm bringing you a meal tonight, I'll be there at 6 o'clock."

Livingston is still appreciative that after his youngest son died, somebody just showed up and mowed his lawn.

And the one phrase never to say: "I know how you feel."
This in the No. 1 phrase to avoid when consoling a grieving mom or dad.

"It's not permitted to say that to a bereaved parent unless you are a bereaved parent," Livingston said. "It betrays such a lack of understanding of what the bereaved parent is going through."

People are sometimes tempted to list their own periods of grief--the death of their grandmother or a beloved family pet--as a way to sympathize, but those are not equivalent losses, he noted.

"To try to explain to people that this is the kind of loss that transforms you into a different person, that you will never be the same person you were before this happened, is almost impossible.:

Thursday, June 23, 2016


Schools out, your sister is in Alaska on vacation, what is a boy to do? No need to worry Chai Lifeline will take care of you. They arrived with the canvas, balloons, paint, darts, and ready to have fun. All Ian knew is that they had a surprise for him, well he was okay with that until it was time for it to happen and then he got "scared". Not knowing what to expect, photos were taken of his friends setting up, shown to Ian so he could relax a little bit.

Balloons filled with paint were tacked to the canvas, more paint was poured onto of the balloons and the masterpiece was started. Dart after dart was thrown at the balloons. Balloons pooped and paint went everywhere...all over the canvas, the chair and the grass. Oh yeah and on Ian and his friends.  

Ian and Jared, his big brother

Mommy and Daddy to into it and trying throwing some darts as well.

Ian and his friends....they are all still pretty clean, the paint fight happened after the masterpiece was done.

The masterpiece is still drying and we are hoping we can find the tape under all the paint to get to Ian's name.

Then came Ian's super hero blanket. Last week Ian and Jared, used an app to come up with a super hero for Ian. It was then transformed into a blanket!

Way to go Super Ian!

Tuesday, June 14, 2016

As I lay in bed, my heart hurts. Today was a rough day for many different reasons. First, let me say that Ian's ok and he's been having good days.

We have had some things going on lately which have made me realize not all people are good. Well I've known it but it was just reinforced. In time those people will get theirs. Karma people, karma. 

Today, both the SMA world and PCH world each lost a child. Two in one day, bamb hit me right in the face. One was quick, sudden. The other wasn't, over the past few days the family watched their child actively pass away. On Facebook, I am part of a SMA group as well as a PCH group so I read when kids pass away from these horrible diseases. Today really hit me, harder than it has in a long time. I am trying to find comfort knowing the kids are not in pain anymore. But the families are in a different kind of pain then they were before, one I know one day I will have to endure. I'm not ready for it, I don't know if I'll ever be ready for that pain.  Every day, there is pain, watching your child be in pain, knowing there is not much you can do to make it better. The pain will be different.

As I lay here, awake, when I should be sleeping,  my heart aches. For those families who lost their children today. My heart aches for my family as we know one day we will lose ours. For now I'm going to try to get some sleep and wake up tomorrow to a new day. One which I will treasure, dream, and live.

Monday, May 30, 2016

All the what if's

This weekend I have the pleasure of attending a dear friends daughters Bat Mitzvah. I was sitting in the back of the sanctuary during the service, so were all the kids. Seeing the 12/13 year old me thinking. What would Ian be like if there was no VRK1? What would his voice sound like? How tall would he be? Who would his friends be?  How mischievous would be? So many what if's...

Some days, the what if's don't even enter my mind. Ian is Ian and I am grateful for him and all he has become. He has taught us so much over his 13 years, and I know he will continue to teach us with whatever time he has left.  I have realized to not worry about the things which we have no control of but to focus on what we do have control of and make a difference with those things. I, usually, don't take things or people for granted. We have tried to teach Becca the same, although I don't think she is there yet, I have faith that as she continues to grow she will get there.

Some days the what if's are all over the place and in my face. There is no way to make them go away, and my mind just wonders and wonders. From reading Facebook post or other blogs of other parents who have already lost their beloved children, I know they will always be there. Once he is gone, I'm sure as each milestone comes the what if's will as well.

Sitting in the back of the sanctuary on Shabbat, the what if's entered my mind for a period of time...but before I knew it they were gone and I was thankful for who my family is.

Always remember to treasure, dream and live!