Congenital Diaphragmatic Hernia Awareness Day...

Time Heals All Wounds?

It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone. - Rose Kennedy

As a Mom who also has had a child choose wings over feet, as someone who has experience life - I have to agree with this quote. I think we accept more of life's unfairness, we endure the storms and enjoy the sunlight when it comes. We always remember and from our experiences it shapes us to the people we become.

Transformations through Grief

When a parent looses a child, there is no word for it. When a child looses a parent, they are an orphan. When a spouse looses another, they are a widow or a widower. We are all at a loss of words when a family has a child die. The best thing anyone can offer the other is their heart and a hug.

I have been thinking a lot of my own grief, others grief and what it all is about in this whole process. How I've transformed and how others have also. We are never as we were before and that can be frustrating for us and for those around us. We loose friends, relationships we had once prior are no longer because we learn what truly is important. Sometimes others just can't be around us. Part of the process.

Too many infants are still loosing the battle to congenital diaphragmatic hernia and it is frustrating because ten years ago, the stats were the same these children over all have a 50% chance. I hate it when parents have to walk down the same path as we did ten years ago. I cry – I wish I could go to the ends of the earth and just give them a hug. I know all too well what it is like to receive a hug from someone who also had their young child die. No words are needed – it is a silent knowledge and comfort. Though both wish neither had the experience – we are thankful we are not alone.

The first few years – parents and families grieve hard – some do it for months – hard, some do it for a period at first and it gradually ebbs. The first few years – people should be kind and not make any judgements. Until you have walked that path, you don’t know and all grieve and react differently – respect that. Only if someone is continuing to deeply grieve – that is depression and you need help for that.

Over the last few years – I also have discovered a technique which wasn’t available to Cecilia – and it explains why she ended up on ECMO. When she was born – vent immediately at the highest setting. (They don’t do that now – there is a gentle vent technique – which became widespread a few years after her death.) I now know what put her on ECMO and caused the lung bleed. We don’t have do-overs. We can wish, would have, could have, want to but in the end – we don’t have that – we have to accept what is – is. That takes time. I’ve far passed that time.

So – grief is individual but if it goes on too long – see someone you trust to help – it isn’t weak to ask for help, it actually is a sign of strength. For those trying to help us through our grief – be kind – be open minded and just be there – but also know sometimes we want to be alone too. It is hard because this is something no one can fix and nothing will ever make it right. An injustice of life we have to live with and learn to live without. We want more than anything to be sure that our child’s case helps others survive. We want no one to go through what we have – and it isn’t because we feel we deserve it or that others do not or we want to be the one and only. The pain we feel and felt – like no other pain – and you wish that pain on no one – ever.

Life is supposed to make you better, not bitter - and our experiences in life too - if they are learning to live without and move through this life to make a difference.

Quotes About Hope..

Hope is the only bee that makes honey without flowers. ~Robert Ingersoll

Hope is faith holding out its hand in the dark. ~George Iles

Hope is putting faith to work when doubting would be easier. ~Author Unknown

Hope is the physician of each misery. ~Irish Proverb

Hope is grief's best music. ~Author Unknown

WORDS OF WISDOM ABOUT LIFE

1. No one can ruin your day without YOUR permission.
2. Most people will be about as happy, as they decide to be.
3. Others can stop you temporarily, but only you can do it permanently.
4. Whatever you are willing to put up with, is exactly what you will have.
5. Success stops when you do.
6. When your ship comes in make sure you are willing to unload it.
7. You will never "have it all together".
8. Life is a journey, not a destination. Enjoy the trip!
9. The biggest lie on the planet: "When I get what I want I will be happy".
10. The best way to escape your problem is to solve it.
11. I've learned that ultimately , 'takers' lose and 'givers' win.
12. Life's precious moments don't have value, unless they are shared.
13. If you don't start, it's certain you won't arrive.
14. We often fear the thing we want the most.
15. He or she who laughs......lasts.
16. Yesterday was the deadline for all complaints.
17. Look for opportunities, not guarantees.
18. Life is what's coming, not what was.
19. Success is getting up one more time.
20. Now is the most interesting time of all.
21. When things go wrong, don't go with them.

Hope...

Is why the stars light their candles every night. Even when the darkness is too deep for you to see them, you know they're out there...shining and beaming across millions of miles like the message you must need to hear...

Don't give up on hope and it won't give up on you.

Nature - an Angel's Favorite HIding Place

Ever felt an angel's breath in the gentle breeze? A teardrop in the falling rain? Hear a whisper amongst the rustle of leaves? Or been kissed by a lone snowflake? Nature is an angel's favorite hiding place. ~Carrie Latet

World Wide Children's Memorial Day...

Light a candle at 7 PM your time and extinguish it at 8 PM so all the angels can see a light around the world. This day was started by Compassionate Friends an organization for parents who have had a child die, no matter what circumstances or what age. Either way it is a loss we learn to live with and hopefully turn around into something more positive.

http://www.compassionatefriends.org/

The Remembrance Book:

http://www.compassionatefriends.org/Other_Pages/THE_COMPASSIONATE_FRIENDS_REMEMBRANCE_BOOK.aspx

The Little While - by Darcie D. Sims

I never tire from reading it each Thanksgiving....
_____________________________

Many years ago we were faced with our first bereaved Thanksgiving. I was worried. Our infant son had died in September and no one felt much like celebrating anything, let alone gathering family together to express our gratitude. Gratitude! About what???? What on earth did we have to be thankful for?

Our little guy had died after a horrible battle with a malignant brain tumor, leaving us exhausted physically, mentally, emotionally and financially. There was little to spend on a lavish meal and I did not have the energy to even think about hosting a family gathering. But despite our unwillingness to participate in the passing of days,Thanksgiving did arrive and we did have a small family dinner. I think the turkey was dry, the mashed potatoes lumpy and I'm not sure we even had rolls. I set the table with our best crystal and china, in a weak attempt at being"festive" but the only things that sparkled during that meal were our tears.

It is a tradition in our family to have the youngest at the table say the blessing, so it fell to our five year-old daughter, Alicia, to find some words of thanksgiving. I was almost glad it wasn't my task to speak of gratitude when there simply wasn't any to be found around our table! How awful of me, a grown woman to wish such a job onto a five year-old!

Alicia refused to accept her assignment. She refused in the manner of many 5-year-olds and it became a battleground between mother and daughter, adult and child. She simply looked at me and said what all of us felt, "What's there to be thankful for this year?" We argued intensely and her refusal guaranteed the silence I dreaded.

I knew this years' celebration would not be survivable. Her stormy face told me to forgo the family blessing. We ate in grieving silence; each caught in our own web of stories, tears and sadness. About halfway through the meal, however, Alicia announced that she would say "something" at dessert.

I wasn't sure what "something" meant, but I figured dessert was something to be thankful for!As the pie was served, Allie told everyone to "hold hands like the Walton's". Slowly, awkwardly, painfully, we reached across our grief and clasped hands, forming a family circle around our table. Allie bowed her head, took a deep breath and in her 5-year-old voice brought us the light.

"Thanks God, for the little while."

In our grief we had focused on what we had lost and worried about how we would survive another day. Alicia, with the wisdom reserved only for children, understood better than any adult around that table, the gift her brother had given us and the gift for which we are forever grateful ... the little while.
__________

And it ALWAYS makes me shed a few tears - the good "ah-ha" tears...

Peace,
Elizabeth

Quote - Very True...

When I despair, I remember that all through history the way of truth and love has always won. There have been tyrants and murderers and for a time they seem invincible but in the end, they always fall -- think of it, ALWAYS.-- Mahatma Gandhi.

Finally I did it...

I finally created a Montage for Cecilia. Something on that never ending list of things to do but always fell to the bottom.

Lions, Tigers and Many Babies - and Tots Oh My!

John Michael is having his surgery right now - in CO - family from Alaska - amazing family.

Sir John Carter - known as Carter - was born 10/7 and is doing really well - Mom and Dad are at Parker's House and surgery is soon...

We have other Mom's that are preparing to deliver...

We also have some amazing Mom's and Dads who are cheering these babies on and their parents thought their little ones just flew to heaven.

And we have precious Ava who has re-herniated and a bowl adhesion repaired - very hard on her absolutely amazing parents. Ava's Blog is listed here too!

Please keep these in your thoughts, prayers and LUNG FUNCTION chants - amazing what positive thinking can do!

99% Suvival Rate Would Be Nice - A Goal...

We have had too many precious babies fight hard against congenital diaphragmatic hernia and still loose the battle - not the war. The war is still going on with their parents, grandparents, families and friends. There is a need to have more effective treatment for these babes and for lung function to be improved so they can survive.

When Cecilia was born in 1999, they had little they could do with the number one killer to these babies - pulmonary hypertension. A few years later there were more drugs out there that could be given to these babes to get them to the point of recovering and those lungs to the point that there may be little need for the drugs or none. Some children may still need the medications - some do not. The point is - it is out there now to help. We need more, so much more.

It just doesn't seem to be enough out there.

I am not asking for a "cure" - I have seen long enough and researched congenital diaphragmatic hernia long enough to know it is a naturally occurring birth defect. I would like to see the survival rate at 99% - nothing in life is 100%. Next is to have more out there for families and children to have the best therapies so when they do survive they can be the best they can be and get the help for them to have a good quality of life and overcome as much as they can.

Some days I feel so helpless in this war on this monster...

In The Combat Against Congenital Diaphragmatic Hernia

Never give in... never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force... never yield to the apparently overwhelming might of the enemy. ~Winston Churchill

William Ethan August 19 - 20, 2008

Another angel blessed us and was called to heaven. He fought valiantly. His parents relocated from Georgia to have him at CHOP and uplifted their lives for him - to give him the best possible care. I humbly ask all to say a prayer for them.

Will is to be remembered always.

Peace.

The Last Lecture - Randy Pausch

Last fall, I received information and the video of the "Last Lecture" from a non-profit email daily newsletter I belong. I love it because I get this inspirational stuff, quotes and stories of people who are making a difference through the world. I had been meaning to order Professor Pausch's book for many months - it just slipped my mind. Other things came up but I finally did order it on Thursday, July 24.

He did something for his family that ignited the world. His children, wife, family, friends and colleges should be very proud of what this man did in life. I hope they treasure their memories and know that love transcends death and so does inspiration.

It is truly an honor to have had his Last Lecture shared with us. I wish his family peace through this time.

Marching On...

It has been over nine years since we received the diagnoses "congenital diaphragmatic hernia" and our world changed. Since that time, I grieved, I grew and I changed. I learned and I stumbled along the way. Doors opened and some closed. I learned to accept that there are things in this life we have absolutely no control and it is how you handle those things. I became a better parent to my oldest daughter and later had Cecilia's little brother.

Hard to call him her little brother, he was always bigger than she. Her spitting image - except she had MUCH bigger feet. Many know I have a thing for baby feet - I think they are the most adorable things on this earth. What I regret most with Cecilia is not having her hand print - I have her foot prints - but not a hand print. Why the expectant families who join Breath of Hope's Listerve receive a Hand print Kit with their packages. (Yes, I know a bit of me BUT most hospitals take foot prints.)


In the process of living as a Mom of an angel I can now say I have more good days and a few might be bad. Her Birthday gets to me still. Christmas is still a forced effort but not as bad. Early in the journey - I rarely had a good minute and gradually they came.


I compare parental grief to crawling into a cocoon and feeling alone, isolated and dark. Gradually you come out of that - at your own pace and in your own time. You learn to embrace your self - your new self and know you still love your child. True and unconditional love never dies - it grows and continues it is a matter of how you project that in your life. Obviously, I still have lessons to learn and am needed here. I accept that. There were days I didn't like that but I accept it.


I have learned that parents of those that survive this horrible birth defect also grieve. They have taught me so much about Cecilia's case and also about congenital diaphragmatic hernia and the treatments and options out there. Her story was written in January 2000, I have edited it over the years but it remains for the most part as it was then. Before her, when a baby with CDH was fighting and their kidneys shut down, every case I had read - the parents were asked to let the child go, there was no hope. The University of Virginia CMC NICU staff didn't do that - they offered hope that perhaps she could overcome. Since her medical case, I have heard of at least seven others that they have used the CVVH machine for hemophiltration. I also have learned that the kidneys failing had nothing to do with her genes but ECMO itself. You see for the kidneys to work - they need that heart beat. ECMO takes that from the patient as it is protecting the lungs and heart and allowing them to rest. Isn't it amazing how all our systems work together? Today, most hospitals try to use ECMO for a shorter period of time. Today they know a bit more. There are drugs out there that can help with pulmonary hypertension. Today sometimes they still do not work.

This week - five families will hear of congenital diaphragmatic hernia for most likely the first time. It is a "naturally occurring" birth defect that isn't really natural. There definitely are no natural treatments for it. It requires venting the baby, possibly ECMO, drugs to help with various needs and the window of opportunity to do surgery and then of course prayers and hope. With each of them it comes down to one thing that determines their survival - lung function. Without it, they don't breathe, their hearts will stop and nothing else will heal. It isn't necessarily the size of the lungs but if they can work properly.

Over the years, I have seen children survive this birth defect and thrive - never showing many residuals in their future. I have seen other children with minor issues such as reflux or eating issues. I have also known of children that battle more issues as a result of CDH. I have known of some that live for six or twelve months or several years and the complications of treatment or CDH eventually take their toll and they die. Their parents have to be pro-active when it comes to their care.

There needs to be more education even among the medical community about these children who do survive it. They are not going to be on a "normal" growth curve. They were born smaller, they were delayed in development and in feeding because their lives where in balance. It was more important for those lungs to recover. It was more important to save their lives. So they are a bit smaller, so they are a bit delayed as long as they are moving forward that is the most important thing for them. Their parents should be praised. Sometimes there are set backs because of illnesses or colds or another diagnoses. Take that into consideration.

One thing I have learned is each person is so individual. Each of these children who have CDH are too. No two cases are exactly the same. Why do we compare ever? It helps if we have guidelines but if these children - all children are progressing - we need to embrace that and understand that if we start treating the individual that is the key to progression.

We also need much more awareness of this birth defect. It occurs just as often as Cystic Fibrosis, Spina Bifida and Downs syndrome in healthy mothers between the ages of 19 to 34. More know about those birth defects. The difference is that in half the CDH cases, they do not survive. I also have heard it called "rare" it isn't rare! Speak to the Nurses and Doctors at any hospital that is equipped to treat CDH babies - their is always ONE in their NICU/PICU. I know of ten families in the city I live that have had children with CDH and there are probably much more.

So I march on...with an angel in my heart - and many others too.