Care Always Perinatal Palliative Care

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Care Always Perinatal Palliative Care Neonatal and perinatal palliative care
Bereavement

08/05/2022

Dear courageous bereaved mama, we honor you today.

It takes courage to live each day as mom whose baby has died.

It takes courage to do whatever it takes to keep his or her memory alive.

It takes courage to continue to parent your other children well when you long for who is missing.

It takes courage to embrace the children of your friends and other loved ones.

It takes courage to admit that sometimes, you struggle to go on each day without your beloved baby.

It takes courage to continue to love others when your heart has been so shattered.

It takes courage to tell your story.

It takes courage to continue to look for beauty and joy in the world.

It takes courage to reach out and share your pain and emotions with others.

It takes courage to accept your grief and do whatever you must do to begin to heal.

And mostly, it takes great courage to carry on each day even though one or more of your children are with you only in your heart and memory.

For all these reasons and so many more, we honor you, and wish for you a peaceful Mother’s Day, surrounded by support and love not only from your friends and family, but also from your precious little ones.

02/01/2022
25/03/2021

When our son died, my husband said that he knew he would be with me forever but that if we made it through this loss, our marriage could survive anything.

21/03/2021

Sheila from the blog To Love, Honor and Vacuum shared this picture on what the process of grief really looks like, and what people think it looks like. Sheila is no stranger to grief, losing her newborn son, Christopher, over 24 years ago. Feel free to share here about your grief process since the loss of your baby/babies.

11/12/2019

Right now, I'm exhausted. I don't mean in the way that I'm not getting enough sleep, or I have too much to do in the day-to-day. I'm tired of being bereaved. Tired of my son being dead. I want out. I want to go

19/11/2019

Grieving Grandparents, we see the way you carry the pain of grief for your grandchild mixed with the pain of watching your own child grieve for their baby.

15/10/2019
09/10/2019

I am returning from Atlanta where I spent 3 days and nights in a hotel with 60 families for the National Tay-Sachs and Allied Disease annual family conference.

18/09/2019

The ability to help save other babies’ lives can make recovering from a big loss easier.

26/08/2019

Important new committee opinion on perinatal palliative care from American College of Obstetricians and Gynecologists - ACOG, also endorsed by the American Academy of Pediatrics and the Society for Maternal Fetal Medicine.

From the conclusion: "Health care providers and institutions are encouraged to develop perinatal palliative care programs, which generally may include the following: a formal prenatal consultation; development of a birth plan; access to other neonatal and pediatric specialties, as needed; and support and care during the prenatal, birth, and postnatal periods, including bereavement counseling."

https://journals.lww.com/greenjournal/fulltext/2019/09000/Perinatal_Palliative_Care__ACOG_COMMITTEE_OPINION,.48.aspx

16/08/2019

By Alison Ferrera As I write this I am acutely aware, as I always am, of exactly how long I have lived without my daughter. Six months and twenty days as of today. It should be getting better, ri…

03/08/2019

This photo was not taken days, weeks or months after my son died. It wasn’t taken within the first year after his death.

It was taken today. Over 2.5 years later.

This is grief. It doesn’t expire or come with an end date. It cuts through your heart and seeps to the deepest spaces where it will reside for a lifetime.

Holding your child’s lifeless body one last time...your brain trying to process the unimaginable while your heart is trying to memorize every detail of their face, their hands, their scent. This moment will never be erased from the memory. This is an image carried forever. It shows up unexpectedly and unannounced. Year, after year, after year.

We all have what we call “our season”. For those who have never experienced losing a child, their season is a favorite time of year because it’s their choice weather, carries their interest of activities, they enjoy the smell in the air or look forward to a special holiday.

When a child loss parent mentions their “season” it is much different.

Our season does not make us excited. It is something we dread instead of look forward to. It is a time period we want to skip. Put us in a coma and wake us when it's over. Our season comes with onset anxiety and PTSD. The smells and temperature of our season remind us of birthdays that will never happen, the memories of our sweet angels when they were with us on earth and the worst day of our lives.

During our season it takes everything out of us to keep going. We are emotionally exhausted. We are distant to everyone in our lives. We do not always respond to texts, emails or answer calls because it’s too much right now. We stay in more, declining invites we would normally say yes to. We don’t have the energy to fake the smile and pretend life is great. We are forgetful and unreliable.

Our season is full of broken dreams and questions we will never have the answers to. The what if’s, what would they look like, what would they be doing now.

Each year we have hope the next one will be easier. But it isn’t. It’s always the same, it’s always hard.

When our season passes a weight is lifted and we catch our breath thankful it is over. Shocked we survived once again.

If you know someone going through this be patient and kind. Expect nothing from them. If they cancel plans at the last minute do not be angry with them. Don’t take their actions (or lack of actions) personally. It‘s not you. They are using every ounce of strength they have to find their way through the darkness and back to the light. This is exhausting and they don’t have the energy for anything else.

My season begins very soon. You could say I am in the pre-season phase...I feel it coming. Almost a month away from what would have been a 3rd birthday. Thinking about it knocked me to my knees today, the anxiety suffocating.

But there is a difference between this year and last year, and the one before. This time I know it’s not going to be easier. This year I am accepting it and not fighting it. I know what's coming. I know what it does to me. I have learned and understand what my limitations are during this timeframe of my life.

I am going to stand still allowing it to hit with full force, a tidal wave crashing into me. As I lose my balance I will fall. I‘ll let the wave of grief wash over every inch of my body and hold my breath until it’s over.

When it has passed I will rise. I‘ll stare at the sun setting in the horizon and remind myself, it hurts this much because you love him so much. I wouldn't trade that love for anything. Not even to take away this pain.

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