An interview with Abby Brogan

I asked Abby Brogan, the mother of Ellie, a “short gut girl”, a few questions, focusing on how they delt with the demands of a special needs child and what keeps them strong as a couple. It’s a kind of Valentine’s present for David and Jasmina. As you’ll see, they’re a charming couple and I’m grateful for advice they give with the experience they’ve lived…

Would you tell us a little bit about you and Gib

We met 9 years ago at a marine field station in the Florida Keys. We have lived in Florida, St. Thomas USVI, Virginia, Connecticut and now Massachusetts. Gib works for a marine conservation organization based in Washington and I worked at the aquarium in Mystic, CT. I quit my job and we sold our house and moved up to Massachusetts to be closer to Children’s hospital Boston, and our families. We have a beautiful little girl named Ellie. We have a blog called “The Short Gut News” that is all about Ellie and our Short Gut life. Oh, and we have a awesome dog named Gus.

Tell us how it was when Ellie came along and it became clear that she would be a short gut girl

I had a very normal pregnancy with Ellie and we had no idea any thing was wrong with her when she was born. She did come 5 and a half weeks early, so the doctor was more concerned about her lungs than anything else. She seemed normal for the first 3 hours. So I did get to hold her after my C-section, offer her the breast and get all the photos that I can’t stand to look at now. During those first 3 hours she spit up a few times, it was dark green, which now I know means something is wrong. We had a great nurse who came into check on us on hour 3 and saw Ellie spit up. She picked her up and walked straight out of the room without saying a word. Ellie was then transferred to Yale Children’s Hospital, in New Haven, and after a few tests had her first surgery at 18 hours old. I was transferred 4 hours later and didn’t see her again until the next day. We had a very talented and very nice surgeon come into my room after Ellie’s surgery, she shattered our world as we knew it. And that is when we first heard the terms “Jejunal Atrisia”, “TPN” and “short gut”.

I sometimes feel that parents with children like Ellie try to adopt a positive attitude about life and enjoying everyday for what it brings. Has it been that way for you?

Yes. If you don’t laugh at what makes others cry or cringe, then this life will make you nuts. Both Gib and I also think we are very funny, so when times get tough we do what ever we can to make each other laugh. Gib and I joke about things (and at times) that others probably think are morbid or inappropriate. I think we are the only family is pre-op holding that is joking around and having a good time.

You maintain a very concise and transparent blog. Has it given you some unexpected benefits?

Yes. It has been the best therapy we ever could have hoped for. It took me a long time to be able to write anything much less my feelings or worries. But, then it just started pouring out. It also helps when I meet other parents or get letters from other parents who say that they loved what we wrote and it helped them feel more normal. It helps knowing some one else out there has gone through and felt the same thing.

Were there some very challenging moments for your relationship once Ellie was born? How did you get through them?

We were told, along with all the other horrible statistics that come with short gut, that many marriages are broken up by a critically/chronically ill child. It sounds cheesy but we promised each other that this would not happen to us. As for challenges. I would say coming home for the first time. Not only the stress of being home with all the medical stuff, but who does what. We have “tried” to split all the responsibilities 50/50. Now this has not really worked, I am too controlling to let Gib be in charge of ordering the medical supplies and I prefer to do all the CVL dressing changes. But as for everything else. We both can do the whole TPN set up, CVL dressing changes, cap changes, G-tube maintenance and ostomy bag changes. We alternate nights doing TPN so one of us gets a break every other night. I think this has really helped. And we are both really good at making sure we keep everything as close to 50/50 as possible. If we can both do everything than one of us can just check out if they need to, to save their sanity. We also talk to each other when we start getting stressed out. It is easy to start over-analyzing everything about Ellie and let your mind travel down the path of “what if”. That can be very scary especially when Ellie is not doing great. We just try to talk to each other about what we are thinking about and remember that we will just do what needs to be done. If things do get bad, then we will just deal with that too.

Do you find that Ellie has strengthened your relationship?

We regularly look back at our life before Ellie and wonder what we did with our time. We have both found that we are much happier and more content in our lives and with each other now, even with all of Ellie’s stuff, than we were before she was born. It just seems that there is such a purpose in our lives now, that was missing before. There are now questions of what we do when a decision arises, we just do what is best for Ellie.

What do you do to maintain a healthy relationship?

Laugh, yell and then talk, talk, talk. We know each other very well and can usually figure out the real reason we are fighting when we do. We also try to be willing to admit when we were wrong, said something mean or were just bitchy. That of course is easier said than done, but we try.

Do you have any advice for parents who have a child like Ellie?

Make your spouse your rock. You both have to do this together as a team as much as you can. Do not let one person take over everything, that only builds resentments. Also, talk to each other, find a support group, a GREAT doctor, a good health care company and a nurse. Oh, yeah and laugh, when times are really tough do what ever you can to laugh. Also when you feel like your life has been shattered or turned upside down, remember that your spouse probably is feeling the same thing. Try to be there for them and let them be there for you.

Are you planning something special for Valentine’s day?

Yes, sleep. Maybe more than 6 hours? Wow, that would be great! Oh yeah, and flowers would be nice too.

The first steps of a journey

Monday evening, we went to see David, Jasmina and Sébastien the day before their flight to Toronto. When we arrived, they told us that they had learned of Finton’s death – a little boy, younger than Sébastien who had also received a liver and bowel transplant only last December.  He had succumbed to a number of complications, including brittle bones and the thickening of his heart. The somber news only seemed to highlight how lucky Sébastien has been so far. Without even expecting it, David and Jasmina have formed almost family-like relationships with the families who live through the same experimental procedures as Sébastien.

It reminds me of a phrase from the children’s “Series of Unfortunate Events” by Lemony Snicket that was playing on TV one lazy evening:

“What might seem to be a series of unfortunate events, may, in fact be the first steps of a journey.”

And what a journey it has been so far! I didn’t think of associating that sentence with this blog until I saw a very moving story. A college team mascot, Jason Ray was the kind of guy everybody liked. He tragically died a few days after being hit by a car. What is special, is that he had already signed his donor card and gave the ultimate gift to 5 other recipients – drastically improving their quality of life. I invite you to visit the website dedicated to his memory at www.RayofHope.com If you have some time, it is really worth watching the touching video on the homepage…

As another week closes…

“There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.”

- Albert Einstein

When words leave off, music begins

Heinrich Heine wrote that quote… or perhaps he said it, illustrating some of the beauty of music. Music is magical… Have you ever been caught in a moment when you didn’t want the song to end? I’ll confess that sometimes, when I come home and a song is playing that I like, I’ll not get out of the car until it ends, savoring the moment as though the notes were too delicious to be left unheard.

Perhaps it is like Victor de LaPrade said: “It is incontestable that music induces in us a sense of the infinite and the contemplation of the invisible.” Or perhaps just as simple as Jean Paul Richter put it: “Music is moonlight in the gloomy night of life.”

My husband and I attended Josh Groban’s concert, and left with more enthusiasm than any other concert we’ve attended. He’d transported us for awhile, away from our reality, into a place where shandeliers sparkled, where girls danced, where lilypads floated onto glass ponds bearing candles at dusk. If we let it, music can take hold of our heart…

Everyone has their favorite songs… Songs that motivate, songs that inspire. For Sébastien’s Gift of Life celebration, a cd of favorites was made and given out as a prize during the diner. This is the list:

Life is Life (Opus)
You are Loved (Josh Groban)
Voices that Care (David Foster)
You Raise Me Up (Josh Groban)
Somewhere Over the Rainbow (Ray Charles)
Angel (Sarah McLachlan)
On the Radio (Regina Spektor)
Living on a Prayer (Bon Jovi)
Walk on Water (Lindsey White)
Lullaby (Josh Groban)
Keep Holding On (Avril Lavigne)
Stand By Me (The Temptations)

And to end this post… I can’t help but include a video clip… It is worth watching!

“The love of a single heart can make a world of difference”

The quote comes from a book entitled “Left to Tell” by Immaculée Ilibagiza and has the sub-title “Discovering God Amidst the Rwandan Holocaust”. Why talk about this on Sébastien’s blog? Because, I think that quotes from the book, like the one in the title, are inspiring and help us give meaning to the life we live, and to live it better. After all, it would be hard to ignore the hope and courage that animate Sébastien’s family.

The book in itself is beautiful and speaks often of love, forgiveness, prayer and positive thinking. A survivor of the holocaust, Immaculée writes:

I was living proof of the power of prayer and positive thinking, which really are almost the same thing. God is the source of all positive energy, and prayer is the best way to tap in to His power.

The other quote I also love concerns how we worry about the future… She writes:

I was certain that God had a greater purpose for me, and I prayed every day for Him to reveal it to me. At first I was expecting Him to show me my entire future all at once-maybe with a flash of lightning and a clap of thunder thrown in for good measure. But I came to learn that God never shows us something we aren’t ready to understand. Instead, He lets us see what we need to see, when we need to see it. He’ll wait until our eyes and hearts are open to Him, and then when we’re ready, He will plant our feet on the path that’s best for us… but it’s up to us to do the walking.

If you want a good read this summer, I highly recommend “Left to Tell”. My husband and I read it on a trip to the Peace Garden yesterday, and the time flew by.

Blessings…

Record humidity

I spent part of yesterday’s idle moments worrying about what to write… And then most of today’s idle moments still concerned that I didn’t have a subject that sparked any great enthusiasm or flicker of promise that “this one is the best post yet!”. And then, in the afternoon, I received a call from my husband who said that we’d broke a record: Never before did Winnipeg ever hit +47 with the humidity. When you walk outside from a luxuriously air-conditioned office, the heat knocks you like a punch in the face, and it feels like the air doesn’t have enough oxygen for your lungs. I therefore blame the weather for quashing my creativity, and drying up the ink in my pen.

Nonetheless, in times when I would rather complain, I think of things that I’m grateful for:

• a wonderful husband
• a caring family
• kind friends
• the chance to be the godmother of a wonderful godson
• books to read
• recipes to try
• projects that I love doing
• summer dresses
• refreshing showers
• 6 in the morning jogs
• flowering plants and creeping vines…

Leo Babauta over at Zen Habits writes wonderfully, and a recent post highlights gratitude. In case it’s a bad day, weather-related or otherwise, Life Hacker gives a few ideas on how to Get Happy in 60 minutes. Do you have things you are especially grateful for?

A poem for courageous parents

A note to readers: those who aren’t crazy about poetry can skip this post! It’s something sentimental for David and Jasmina with special thanks to Cathy who sent it to me.

Heaven’s Very Special Child

A meeting was held quite far from earth
“It’s time again for another birth,”
Said the angels to the Lord above,
This special child will need much love.

His progress may seem very slow
Accomplishments he may not show
And he’ll require extra care
From the folks he meets way down there.

So let’s be careful where he’s sent
We want his life to be content
Please, Lord, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they’re asked to play
But with this child sent from above
Come stronger faith and richer love.

And soon they’ll know the priviledge given
In caring for this gift from heaven
Their precious charge, so meek and mild
Is Heaven’s very special child.

- Edna Massimilla

Somewhere over the rainbow…

Unfortunately, I have little news of Sébastien… neither much better, nor much worse. Thursday he received a medication that thickened his blood, and increased the level of platelets. Friday, his platelet level decreased a little… His parents and family are anxious for him to open his eyes. Thursday he had tears apparently, which pleased the doctor who said: “It’s a good sign! He has emotions!”

UPDATE: Saturday morning, David leaves us a cheery message: Sébastien is doing well, he’s quite stable. He opens his eyes pretty wide! 

I received a link to a YouTube video, and watching it at work almost made me cry… The little girl that sings is 6 years old, and has an angelic voice, full of innocence and beauty. It made me think of Sébastien. The lyrics are here.

Every day counts

“How is Sébastien? Have you had any news?”
“No…” I answer a bit helpless. “We expect he’s stable!”
Isn’t that how it is with recovery? Nothing spectacular, but small daily victories, hardly perceptible…

As it was rainy on Saturday, I went to the library and found a wonderful book entitled: Every day counts lessons in love, faith, and resilience from children facing illness written by Maria Sirois, a licensed clinical psychologist. She writes about her experience during one year as an intern at the Dana-Farber Cancer Institute’s pediatric oncology ward. Here are the top 10 most beautiful quotes from the book that taught me about:

Physicians: I learned how physicians do what they can based on what they know, and what they don’t know can be astonishing. Into that gap the good ones leap, using intuition, experimentation, and a willingness to go beyond the traditional borders of care to stretch the limits of the field. Through the creativity of these physicians, children who should not have, according to medical statistics, and some became fully cured despite obstacles others could not surmount. The term miraculous came to mind more than once that year at the hospital, as did a clear awareness that we don’t yet fully know, either in psychology or medicine, what will definitely offer a cure for any one person. (p. 5) Our physicians face a daily onslaught of bad news, difficult decisions, anxious patients, and unpredictable outcomes, all under the intense pressure of not enough time and the internal desire to do it all right for each patient every time. It is, in this new century, a profession that asks an extraordinary amount of its practitioners with little scaffolding to carry them through the emotional and mental exhaustion of the chronic presence of suffering. (p. 184)

Hospitals: A small city where travellers take up residence but never feel at home. (p.35)

The struggle: It is all a matter of holding on or letting go. Life can be reduced in most moments to this – the struggle to hold on and to let go.

Learning the truth: “Every professional faces this, Maria. Every doctor, psychiatrist, psychologist, nurse and social worker learns this one truth at one point.” /…/
“That we can’t do it all?” Jason asked.
Paula turned to him. “That none of us is God.” (p. 85)

Time: In oncology, there is only the present time for physicians. The pressure of a full schedule, unexpected emergencies, interns and residents to train, exhaustion from being on call, and the relentless pager all cohere to create a hospital environment where doctors often do not wait for a better moment – later may not arrive for myriad reasons both practical and awful. (p. 41)

Fear: When she became truly honest with herself, she learned that fear was actually sometimes worse than the pain. She referenced a quote from Robert Frost’s “A Servant to Servants” – “the best way out is always through” (p. 184)

Love: Life is long. Everyone suffers at some point and everyone suffers tragedy upon tragedy at some point. The question is not what to do with the client, the question is how do you keep yourself full when the cataclysm comes? No healing happens when the healer is depleted. Fill yourselves. Then you’ll be able to offer a great deal, even if it’s only love that you offer. (p. 91)

Doing what you love: Jake’s youth and innocence supplied him with a protection and a knowledge I had forgotten. If you can live in the moment doing what you love, as children can, and you are surrounded by those you trust, then suffering is ameliorated and it becomes a part, not the whole, of your life. (p. 24)

Advice from Annie Dillard: “Spend it all, shoot it, play it, lose it, all, right away, every time. Do not hoard what seems good for a later place in the book, or for another book; give it, give it all, give it now… Anything you do not give freely and abundantly becomes lost to you. You open your safe and find ashes.” She reminded her students of the note found in Michelangelo’s studio a few days after his death, a note left for his apprentice Antonio. It said, “Draw, Antonio, draw, Antonio, draw and do not waste time.” (p. 114)

Advice from a 16 year old patient to other patients: “Just tell them that every day counts. Even it it’s a sick day it still counts. /…/ What I mean is to try and find something that will make each day special. /…/ Even if it’s a bad day.” (p. 145)