Christmas 2018

“The one who can do all things has done great things for me—oh, holy is his Name,”

Luke 1:49

"And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people.

For unto you is born this day in the city of David a Savior, who is Christ the Lord."

Luke 2:10-11

This year I felt like almost everything was on track.  

Because of the early snow, it took a while for me to be able to go visit the cemetary and change the seasonal decorations.  It was precious to see the deer prints in the snow as they had passed by before I got there!

I was planning to wrap the Christmas presents earlier but it looked like I would get to it last minute like I usually do.  But with the priceless help of two of my biggest kids we wrapped all of them 3 days before the dreaded time limit!

So, a week before Christmas, my 9 years old busted his lip open so bad that we decided we needed to make the trip to the ER.

This was a mistake and other than the peace of mind it gave us, it was a bad judgment on our part.

Anyway, his lip did heal totally and rapidly and he learned that pretending to be Spider-Man was not the best of ideas in the winter.  (he tried to climb both opposite walls in the upstairs hallway but in the winter the walls are dryer plus the upstairs hallway is wider)   He probably would have been just fine in the main floor hallway just like his older siblings were...

My oldest boy being Spider-man in 2008

On Christmas Eve, we get together at my in-laws place for a traditional meal and for years we have played a game where we each bring at least a small gift in order to play.  For many years I’ve been dreading it because I simply have an aversion for spending on cheap stuff that we, most of the time don’t need.  I tend to be a minimalist kind of spender.  So instead of buying useless crap, I’ve tried thinking outside the box this year.

A few weeks before Christmas I donated to a gofundme for a cancer treatment for a student at my children’s High school.  I wanted to give more but felt my budget was already stretched and knew I had to spend on the gifts for the game.   So, I bought candy canes and gum and made a donation in honour of the person that would get the gift.  Because kids are playing the game, I figured they would be pleased with gum and candy canes regardless of the donation.

  

We had a peaceful and fine evening at my in-laws.

By tradition, we open gifts on Christmas morning.  The kids were happy and grateful which made me very happy too.  Every year, their smiles as they open their presents are priceless.

For dinner, that same day we headed to my parents home where we almost got the whole traditional meal but the oven stopped working properly as it was cooking the meat pies that I had contributed with.  That was disappointing but we had so much to eat that it felt very wrong to complain!  The next morning, the oven broke down completely.  My brother came to the rescue with a brilliant and unusual idea to keep the brunch food warm!  I had to take a picture of this!

On the following day, Lane got sick and it slowed down the pace for the rest of Christmas break.   
Then, four days later, Leilani was jumping on the couch and hurt her left wrist.  The next day we went in for X-rays that revealed that nothing was broken.  Praise God!

Finally, the kids were ecstatic when I proposed to bake gingerbread cookies on the last day of the holiday break!

I am not ready for Christmas to be over.  I am not sure what happened this year.  I feel like I was so preoccupied by my children’s health issues.  I have yet to take down the tree... But I’ll get to it...

I’m glad I didn’t have a long to do list because going with the flow was the best way to go!  

Thank you Lord for the food we had in abundance during the Holidays.
  

I think my parents were relieved when they found out the oven was an easy fix.  A mishap that occurred on a busy day but that was not disastrous.

I’m thankful that Lily was remembered by her grandmother. 

I’m so glad that we had snow and ice to enjoy the winter despite the health setbacks.

I’m grateful that on Christmas morning our  hand crafted farmhouse kitchen table was ready!  My husband did a fantastic job, I love it!

Praise God that the kids healed quickly and completely, and that He had an angel protecting Leilani as she recklessly jumped on the couch.  I’m thankful for the available and competent health professionals we were able to consult.

I’m  impressed and thankful for the options that Evan Bugatto's family found to try to heal him and give him a better quality of life and a stronger immune system.  

If you want to know more and follow Evan’s story, here is the link to his gofundme and Instagram account:  https://www.gofundme.com/please-help-evan-bugatto?viewupdates=1&rcid=r01-154742580167-91e81b7b6fb24bef&utm_source=internal&utm_medium=email&utm_content=cta_button&utm_campaign=upd_n
Instagram: @evanbugatto

Capture Your Grief 2018

Day 1. -SUNRISE

To be honest, I forgot about this project this morning. I have been very busy and overwhelmed for what it seems forever and I needed the extra sleep. Today was Election Day and the kids didn’t have school. And in the end all is well because this morning was cloudy and I would have been disappointed and lost precious sleep for nothing.

So, here is a photo of the only sunrise I was able to wake up for and capture while on vacation camping in Salisbury MA a month and a half ago. It’s not the prettiest or the most colourful but it was peaceful and warm.

Day 2.  -PURPOSE

The reason I am doing this project for the 6th year is because I find, as I’ve said before, creativity is healing for me.   This is the first year I have a cell phone so my photos will also be easier to take and post.  I don’t think I would have done it if not with this useful and incredible tool!   My photos will probably not be as good quality but that represents another challenge!  I intend to enjoy the ride and the beauty that surrounds me this month.

Day 3. -ESSENCE

Lily is the baby girl I will always wonder about because our time together was too short.  To me she 

is my missing piece, my gift, my treasure.  The little girl that I get to love.  She’s my turnings point.  

« In English the meaning of the name Lily is: Lily flower. Pure. The flower lily is a symbol of innocence; purity and beauty. » 

 

Day 4. -TODAY

Where am I right now with my grief?  

I live with it.  It's going nowhere.  I'm so glad that I was able to accept and not try to hide or pretend that grief was nonexistent right from the beginning.  I think that it's crucial to accept what grief does and the amount of space it takes when it's so fresh...with time it evolves and I believe it can bloom...

Day 5. -RITUALS

I don't have rituals to remember Lily.

I like to remember her by including my "comfort bear" or other items in my photography.  I blog.  I take random pictures that remind me of her.  We celebrate her birthday every year.  

Day 6. -HEALING

To me healing is being able to breathe again.  For a whole year and more most days I felt like I couldn't breathe. I believe it was only after having my first baby after loss that I noticed I could finally breathe again!  Creativity helps also.  I know that God gave me that gift, He knew and He answered my prayers...

Day 7. -WISDOM

I don't know what to say about this...                                                                                                        If you know someone that is going through loss, follow your heart and just be kind.  Don't say too much but instead listen.  And there is nothing wrong with giving a thoughtful card or a special gift after the baby's birth. The card that says "Congratulations, on the birth of your beautiful baby, I'm so sorry for the pain you feel right now..." or the picture frame or ornament or the teddy bear are precious items that will bring comfort.  It was hard for me to receive nothing.  My arms were empty and yet, I had given birth for the 6th time...  I had to buy myself small meaningful, memory making "gifts" because I received nothing.  That sucked and made me feel pathetic.

Day 8. - SUPPORT

One of my favourite is Sufficient Grace Ministries.

Another is my Hydrops Fetalis Facebook support group. 

And like I've said many times, God provided with a good friend that knew how to listen and guide me through the first months of grief.

Day 9. -TRANSFORMED

During the first years, I felt like I was not myself anymore.  I seemed to dislike almost everything I used to like doing like cooking, baking, watching tv. etc...  I don't remember much of that first year especially, I had so much trouble focusing, much more than I ever experienced when pregnant!  I didn't feel like it had made me a better mom.  I felt like I was more terrible at motherhood than I ever was.  My level of energy dropped, I think it was sucked up by grief.

Slowly I began to be more like before loss.  But it's never the same.  She is always in my first thoughts in the morning and my last at night.

Day 10. - LOVE LETTER

Day 11. - HONOUR 

Coming up in 4 days is International Pregnancy and Infant Loss Awareness Day, a day where at 7:00 pm I observe, along with thousands of other people around the world the Wave of Light and light up a candle in memory of my girl and so So so many other babies.  This is one of the ways I honour Lily’s memory.  I also take care and decorate her spot at the cemetery.  

I was just discussing this with a beautiful friend of mine and she was telling me about how she decorated her sons grave every year on his birthday.  I couldn’t say the same because Lily’s stone is a maker flat on the ground and we still have snow on her birthday.  It’s funny that the year she came and left the snow was already gone and since, it never reoccurred.  Anyway, I wish this is something I could do on her birthday but  I just can’t.  Maybe someday there will be a way to lift up the stone or something so I can have access to it all year long.

Day 12. - JUST BREATHE 

I’ve always been very forgiving of what was said to me that was not  the nicest comment.  I was because for one, I am someone who has a tendency to say the wrong thing in difficult situations.  I think that a lot of comments are not intended to hurt and are simply said out of ignorance and good intentions.  I could barely respond when someone said something a few years ago.  But now I can better respond and educate.

Day 13. -EDUCATE

I was not expecting that grief would be stitched on me and would take so much emotional space in my everyday life.  I literally carry this love for my girl in my heart 24/7.  She takes space in my heart. Of course I don't need to buy her shoes or a new swimsuit when the one she had last year doesn't fit anymore. I don't need to cook for her, do her laundry or attend teacher meetings.  I never had to  make sure I gave her enough attention and listened to her  like I love to do for my living children.  I try to find a way to work my way around the attention I owe and need to  give to my living children  while also taking some time to preserve Lily’s memory.  I'd like people to know that a mother's love is stronger than anything, it never dies.

" A mother instinctively protects her child.

   A grieving mother instinctively protects her child's memory."

Day 14. -

** I will update with photos for each day as soon as I can.  It's hard for me to keep up but so far, I'm better at it than I've been the last couple years!

The clocks project

I finally did it!  After going back and forth on where to put this new decor and having no clue on how to dispose it all, I did it!  But not without the help of my generous and talented friend Cynthia!

« In these moments, time stood still »

Every. Single. One.

World Down Syndrome Day 2018

https://m.youtube.com/watch?v=nbvhTlhse9k

In honor of WDSD2018, I'm sharing the inspiring testimony of Ryan Pittman.

Christmas 2017

I was so spoiled this year!  Hand made gifts from my 2nd and 6th grader.  Handmade gorgeous painting from my first born, now an adult.  Those gifts are truly my favorites!  My 8 year old was so excited to be preparing his gifts!  It was cuter than cute to witness.  My 11 year old was quiet but knew I would love her handmade present!  I know my oldest had put a lot of time and love to make my gift.  I was not aloud to enter bedroom for over a month!

Looking at my Christmas tree, it came to my mind that when I lost Lily, I also lost that kindergarten Christmas handmade ornament that I've collected from all my children on the year that they were 5.  I lost all the other love filled hand made ornements that would have followed in the years after. 

Of course, this is only a small detail in our lives on this earth. I will not bring any of these adorable keepsakes with me when I'm gone.  They won't matter. I simply wonder what colors she would have picked, what her personal touch would have been.  How her handmade gifts would have turned out.

But I also received a special ornement from my mother this Christmas!  Every year, my mom gives each one of us a Christmas ornement to add to our tree.  It was so thoughtful of her to give me one with Lily's name on it.  It really means a lot to me that my girl was remembered this way.

Merry Christmas in Heaven baby girl!  Until we meet again and you show me the colors that are yours...

The first day of school

Today was the first day of the school year.  None of us felt like going back.  Back to school, back to a routine. Farther away from beautiful and warm summer weather, away from unstructured, laid back, adventurous and fun summer vacation.

And right on spot for the "could haves", "would haves" and "should haves".  It's hitting me that things could have been so different if Lily was here. 

But unlike many, I'm relieved that she doesn't have to go to school. Heaven is so much better!  I like thinking it's like never ending summer vacation at the beach.

I still miss her presence, what she would've brought to our family.  I would have enjoyed watching her grow and learn new things just like I do for her siblings.  It's truly a blessing to be part and witness the growth children go through in life!  But I'm happy she never will experience the dull and difficult things we all have to go through here on Earth, only never ending heavenly peace.

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