This blog is about love despite a prenatal diagnosis, grief & healing after baby loss, hope, faith, pregnancy after loss and Hydrops Fetalis awareness.

Wednesday, April 12, 2017

The first sunrise

A courageous, tenacious, smart and funny man passed Saturday afternoon.  All his life he battled Cystic Fibrosis.  He was sick, he got better, he was sicker, got better again and so it went on. He got married to one of my high school friend and he invented a machine to help the breathing of people who had Cystic Fibrosis.  But above all, he loved Jesus and he knew with no doubt where he was going.

His sister Marie had passed also when she was very young and I must have been around the age of 7? I remember going to her funeral and I remember feeling so sad for her parents, I can't remember the details but I must have heard, seen and felt  how devastating her loss was to them and also to her brother.   I even remember one of the songs they played at her funeral, every time I hear it, I think of her.



When Lily died, I wish I had thought of capturing the sunrise, her first sunrise in Heaven.

So Sunday morning I happened to wake up early enough to be able to sneak out of bed after nursing Lei back to sleep and I went to capture my friend's first sunrise.  Had I been a few minutes earlier, it would have been glorious as I could see the colors fading as I approached the view point.

I can't say we were close because we were not.  But I prayed for him and his family while he was waiting for a second lung transplant.  I know that those who were close to him will miss him tremendously because you just can't move on and not notice his absence.

I am heartbroken for his parents and his wife.  I know they grieve with hope because he is healed now and he is well.  I know they have faith and they know he has just gone before.  But Louis' absence still hurts and I know the grief they will face everyday.








Matt Hammitt--This is Grace

The reason for our suffering
Is to help us realize
That in sickness and in death
We are helpless without Christ
And the reason for our blindness
Is for Jesus to open our eyes
Bless the Lord, bless the Lord

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
So we wait for the sunrise
How I long for the sunrise

Your glory has always been shining
Since the beginning of time
But in the face of darkness
How radiant Your light
Bless the Lord, bless the Lord

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
When we wait for the sunrise
How I long for the sunrise

And the one's who are marked by suffering
Are the one's who have found their Joy
To be conquerors in all these things
Struck down but not destroyed
Bless the Lord, bless the Lord

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
So we wait for the sunrise

This is grace, this is grace
When we walk through the dark night
This is grace, this is grace
So we wait for the sunrise
And I have faith the sun will rise

Sunday, April 09, 2017

His Grace and Comfort and how we celebrated year 5

I've had a busy week.  Every morning, I felt like staying in bed.  I knew today was coming.  I can't complain, despite the cloudy and rainy forecast we had for the whole week, not a day went by that we couldn't go out for a walk or play outside.



My amazing friend and neighbor came twice during this week and helped me get out the door with my 2 youngest. Perhaps she felt it, perhaps not, but I'm sure she doesn't know how much I needed her to be there and how much I appreciate it!

I received an email from 2 of my friends who wanted to let me know they were thinking of me and Lily as her birthday was coming.  How thoughtful of them!

This past week I also had the honor to be another friend's official birth photographer!  It was a night filled with beauty and life, it was wonderful!  I had prayed that my friend would have a peaceful, uneventful delivery, the delivery experience she longed for and the Lord answered our prayers.


This year is the first time I was not awake at the time of Lily's birth.

This morning, when I woke up it was snowing and again, I felt like staying in bed.



As usual, my beautiful baby girl was by my side sound asleep and again, I felt so in love and so blessed!  Yet, I waited for her to wake up and dragged myself out of bed.




When I saw I could write Lily's name in the snow, I did.


Today was like a typical Saturday, with a couple things on my "to do" list, including decorating Lily's cake. 
When I opened my e-mails, I received the most thoughtful and beautiful words from a friend in Switzerland!  That was really amazing!

I had a lot of trouble focusing and getting things done today. 

Then my sister posted a photo of her name!  I was really, really surprised because I had no expectations from my FB friends or from my family!  I loved her idea so much that I reproduced it for the cake for which I had no clear plan yet.


My friend Souphaly also posted a special image on my timeline to let me know she remembered.  That was so very kind and sweet!


Other Birthday wishes from my friends:

--"Thinking of beautiful Lily today."  Cindy

--"Special thoughts Lily on your angel anniversary." Heather

--"Big hugs for you and thoughts for your precious Lily"  Cynthia

--"Have fun Lily with Myléna and Samyra...Happy Birthday sweetheart."  Jessica

I am so grateful for my sweet and thoughtful friends and for my family!


My children are getting so grown up...  I have 2 teenagers and my oldest is an adult!  And we couldn't be all reunited for supper or for the cake.  We were almost done when my oldest exclaimed: "The sky is pink! The sky is pink!"  In a couple seconds we were all three girls outside taking pictures of that amazing sunset!  God painted the sky pink tonight.  To me, it' Him letting me know that He has not forgotten me nor my baby girl.  That I have it all in Him. His love, grace and comfort have been all around everyday this week and that is just so amazing!


We blew a candle after this but since I couldn't take photos with good light and it was late, we didn't have cake and had cupcakes instead.


And here is a photo  took the next morning...  I don't like how the color turned out, so for fun, I edited them and changed them!


Tuesday, April 04, 2017

Remembering Lily, year 5

Lily's birth day in Heaven is in less than a week!  She would have turned 5...It's surreal that she would be learning her ABC's and going to school next Fall.



I would love to remember other children who will be celebrating with her in Heaven by writing their name and birth date.  If you would like me to write your child's name you can comment under this post or on the event on FB https://www.facebook.com/events/1855915094696377/







Although things are not perfect
Because of trial or pain
Continue in thanksgiving
Do not begin to blame
Even when the times are hard
Fierce winds are bound to blow
God is forever able
Hold on to what you know
Imagine life without His love
Joy would cease to be
Keep thanking Him for all the things
Love imparts to thee
Move out of 'Camp Complaining'
No weapon that is known
On earth can yield the power
Praise can do alone (or prayer can do alone)
Quit looking at the future
Redeem the time at hand
Start every day with worship
To 'thank' is a command
Until we see Him coming
Victorious in the sky
We'll run the race with gratitude
eXalting God most high
Yes, there will be bad times
and there will be good, but
Zion waits in glory . . .
where none are ever sad!


-Author unknown

Wednesday, March 22, 2017

Tuesday, March 21, 2017

T21


It took an effort for me to wear different socks but I did it for the cause,  I have to say my 3 years also wondered what was wrong with me today!

I am proud to support World Down Syndrome Day and I love the hashtags!

Saturday, March 18, 2017

T18



Today I remember Grace and Eliana


Friday, March 17, 2017

St Patrick's Day 2017

Our family celebrated St Patrick's Day for the first time in 1999!  My first baby was brand new and I had a daycare at home.  I was always looking for  something to celebrate and for themes to explore. Back then, my hometown, and my community, was mainly francophone and St Patrick's day was not something popular and I didn't know anything about it!  So I did research the origins and thought it was interesting and fun!




I love St Parick's day!  It's fun, thematic and delicious!  For many years I have been making a traditional Irish Beef Stew that I serve with homemade Irish Bread and a desert with some green colors.


In 2012, we took this photo, I'm so glad I was in front of the camera with Lily in my belly and not hiding behind the camera like usual.  I remember I was exhausted, I was two days from our anatomy scan appointment and I could feel something was wrong but I was not willing to believe it.



The last 2 days we had a big snow storm.  The weather was so different from 2012 and also from last year.  I had fun recreating partly the picture that we took last year.




Here is a production by VeggieTales, I think it explains the history and origins of who exactly was st Patrick.





Monday, March 13, 2017

T13

Today I remember Noah, Amelia and Hadley

Wednesday, March 01, 2017

March 2017



March is Trisomy Awareness month.

I have friends who lost their babies to trisomy 13, 18, 21 and 22.  Before Lily came, I thought the only trisomy that was possible was T21 and I knew very little about it.  I had babysat 2 boys with T21 when I was a teenager but that is it.

I will never know for sure that trisomy caused or didn't cause Lily's Hydrops, but it very well could have been.  So I am very sensitive to the cause and believe every soul has something to bring to this world.

Tuesday, February 28, 2017

I love someone rare



Today was Rare Disease Awareness Day.

Hydrops Fetalis is a rare disease and Lily was not only rare, she was unique.

Yes, the causes to Hydrops are not always rare, but I don't know for sure what caused it for Lily.

I love someone who is rare.  Lily.






Friday, February 03, 2017

CHD Awareness

Congenital Heart Defect is the most common birth defect.  1 in 100 babies have CHD.

7 years ago, in 2009, my sister and I were pregnant!  Although we lived 12 hours apart, expecting together was fun, unexpected, precious and unforgettable.  My handsome nephew was born on the first day of November,  his cousin would be welcomed earth side 13 days later.  I remember calling my sister in the hours following and how excited she was that it was a boy! She could already foresee our boys playing together and becoming best friends, and that made me smile too.  Bliss was short lived. My perfectly healthy nephew had an undetected Congenital Heart Defect.  He was fighting for his life. When I learned how critical he was, I gathered my children and kneeled down to pray with them. The vision I had of my boy and his cousin growing up together was overshadowed at that point where my sister could loose her baby boy and our families would forever be changed.  I could picture family gatherings and how forever tinted by grief they would be.  I refused to accept that my sister could endure such a pain. So I prayed for a miracle.   I prayed for God, our Almighty Healer to fix my nephew's broken heart.  The Lord answered our prayers and the surgery was successful.  We celebrated Christmas together and photographed our wonderful boys together for the first time.



During those Holidays, my cousin's newborn son had successful surgery to fix his heart issues. Praise God!

Finally, in the fall of 2010, I learned that my neighbor growing up and his wife had lost their gorgeous baby girl to CHD.  She had fought for 5, almost 6 months.  I packed up all five of my children and went to the memorial service.   The next year I learned from friends closer to them than I was, that they had lost a second daughter to the same condition.  Heartbroken for them is not even an accurate word.  They had carried both their girls to birth despite their life limited prenatal diagnosis.
This is pure unconditional love, painful and beautiful all at once.  Back then I had not thought of all the "details" of getting a prenatal diagnosis and what would follow.  Now I see, now I know.

After Lily died, I came across the page of Cora's Story on FB.  Cora passed in her mother's arms while nursing.  She was just 5 days old.  She had a Congenital Heart Defect that went undetected. Her family is now devoted to promote awareness in an effort to detect CHD with the help of pulse ox screening before babies leave the hospital.

https://www.facebook.com/Coras.Story/



Like I wrote in my last post, I am still part of the Hydrops Fetalis support group on Facebook.  I still share about our journey and I pray for the babies and families affected by Hydrops.  This is where I started following Clara Ray (Prayers for Clara Ray) her Hydrops resolved but she had CHD, other challenges and very determined parents to carry her and to fight this with her.  On their page they shared about today being CHD Awareness Day.




So today we wore red.  CHD is the most common birth defect and 1 baby in 100 have CHD.  I will keep praying for Clara Ray, Piper Jae, Lillian and so many more.  I will keep praising God for my nephew and my cousin's son's recovery.  I will pray for God to comfort my friends and other families who live every day without their children because of CHD.


Wednesday, January 25, 2017

A letter to Clara Ray's mom





Dear Johanna,

At this time last year we were both pregnant, our babies were so tiny!  I was braving pregnancy for a second time after losing my daughter Lily to Hydrops Fetalis, scared of history repeating itself but still offering my support and prayers for the babies and parents fighting this harsh condition.  I started following you and your baby girl's journey on the Hydrops Fetalis FB support group after a few posts you had shared the link to your page Prayers for Clara Ray. When you shared that your baby was Hydrops free, I was thrilled that she had won against it, against what killed my own baby girl 4 years ago.  You inspired me throughout MY pregnancy.  You knew your baby would have to fight and you were not giving up, you were still smiling and capturing beautiful memories of your gorgeous growing belly.  All of this despite the fear and the unknown.

On a blessed day of June, you delivered your beautiful and perfect daughter Clara Ray!  I was still waiting for my baby to be ready to be born and I remember thinking that Clara Ray was so beautiful, if I was going to have a girl, mine would surely be a pure masterpiece, just like yours!  She cheered me up and gave me hope while I was getting more and more anxious and tried to push away my fears! I prayed for you and your baby girl and thanked God for her.

On a perfect day of July, I gave birth to my second rainbow, a baby girl!  Like yours she didn't have much hair, so I got her pretty headbands like I had seen on your girl.   Also, I  had a crush on those cute bandana bibs Clara Ray has been wearing, making them even cuter!  I missed out on your updates during the first months of postpartum.   Now, not a day goes by that I don't think of your Clara Ray and pray. As I keep reading the updates,  I love seeing her grow, just a month ahead of my girl.  My heart breaks every time she gets sicker. When my babies get sick I just can't wait for them to be themselves again, I can't imagine how hard it is for you knowing there is no cure.  I wait and pray anxiously hoping for good news of your girl bouncing back!  I think you share and update brilliantly, I believe this is a God given gift.
I cried when I read your childhood story.  I was amazed at how God revealed himself to you and praised him for the people that rescued you.  I praise God for your wonderful husband.  We can't tell what people have been through just by looking at them.  The incredible and cruel reality is sometimes something we never would have fathomed.
I want Clara Ray to live.  I want you to capture her on her first birthday, staring at the candle on her cake with her big blue eyes.  I want to see her grow and thrive.
I will keep praying for Clara, for a miracle, I will keep pleading. Thank you Jesus for both our girls.





Here is the link if you want to help by donating: https://www.gofundme.com/n6r92yqk


"Children are a gift from God, babies are a reward." Ps 127.3