I am not strong, strength finds me

For several years now, I feel I have been living a lie of who I am. Of how you see me. So often, I have heard the words, “You are so strong. I could never have the strength to live through what you have lived and still be standing. To have my child battle cancer. To have my child die. It is unimaginable, unfathomable. You are so strong. I could never have your strength. I could never.”

Truth is I am so weak. I am so very weak. I am far from the "strong mom" that I have been declared. That you believe you see. I had zero choice in my reality. Have zero choice. If I did, this would certainly not be the version of life I would ever choose. I would never have chosen to watch my young child suffer a horrible disease, one that ultimately took his life. I would never choose to walk this earth everyday forward without my child. I would never choose grief, pain and suffering. I would never choose this version of my life. I would never choose this reality.

I had zero choice. This is my reality. It was forced upon me. What choice did I have in any of it? What choice do I have now? What is the alternative? To give up? What would giving up even look like to you? Because the truth is I have given up. I gave up control. I gave up my idea of our family. I gave up my idea of our future. I gave up my dreams. I gave up my idea of hope. I gave up my idea of a miracle. Of a cure. I gave up on my child living. I gave up everything I desired in my life. I gave up my life. I GAVE UP. I am weak, and I gave it all up. UP. I gave it UP.

I gave it all up to God. I gave him the control. I gave him my family. My child. My future. My hope. My trust. My faith. I gave it all up. I gave Him my life. I said, “It is Yours.” I can not, but You can. You, God, take it from me. I give up. I gave up.

Recently, I have been watching Private Practice on a streaming app. And one episode, one moment in the episode, caused me pause. A statement in the episode so perfectly explained strength. One character said to another, “Where did you find the strength?” The other replied, “We’re women, honey. The strength finds us.” The strength finds us.

Strength found me. I am not strong. The strength found me. God’s strength found me. There is no other explanation. Period. I am so weak. But the strength of God fills my soul. This “strong mom” I am so often labeled as is a lie. The truth, I am strong because of God. His strength finds me. The truth, I am strong in my faith in God. I am strong in God. I gave up. And he picked me up. He filled me up. He became my strength.

It is not my strength you see. It is all God. He promised me on October 21st, 2016 in the PICU room on the 6th floor of Phoenix Children’s Hospital, that He would never leave me. Two days into my son’s diagnosis, as my child was recovering from brain surgery, He promised me. He promised me that this was His fight, is His fight. That he would carry me if I let him. And I said to Him to carry me. That I can not do this on my own. That I am too weak. Carry me. Carry me. Carry me.

This “strong mom” you see is no different from you. I am no stronger than you. I have just been held to the fire in my faith. Put in the lion’s den. I have been forced to step out of the boat in faith. I am trusting God. Trusting He will hold me up, carry me, and give me the strength to live through today, tomorrow and the next day. Faith that God’s strength finds me every minute of every day.

I lean into His strength, His promises. Trusting and knowing His promises. The promise of an eternity in heaven. The promise He will never leave me. The promise my battle is His battle. The promise He will carry me, and never let me fall. No matter my pain, my suffering. I can lean into His truth. Rely on His strength. I am strong because my God gives me His strength. The strength to live today and to see tomorrow. I am weak. I am not strong on my own. I am strong because my God is strong. I am filled with His strength. My God is strong. I am weak.

Written by Kristen Puma

Psalm 59:16 NIV : "But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble."

the day before your 8th birthday

Sammy,

Tomorrow you would be 8 years old. A birthday on earth would be so much easier and simple. But instead you are celebrating your second birthday in heaven, with 6 on earth. Grief math. You do not age beyond 6 years 2 months and 28 days. Every day further is a day you are in heaven. No wishes to blow out. No party to prepare. No friends to invite. No presents to unwrap. Just memories. Memories is all we have. The best birthdays behind us. Every birthday is behind us. We can not document as you grow. As you add another year to your life. I have no idea if your best friend would have changed with entering school? No idea what clothing you would prefer to wear? How you would want your hair styled? What tv show would be your automatic watch? Or what music would be you jam? No idea if you would be walking yet? Or back in martial arts? No idea if you'd be writing your name or using a keyboard? Would you still beg for your 3 books at night? Or would you be reading them to me? Everything about 8 is a mystery. Just as year 7 was all a mystery. I can dream of who you would have been. But dreaming is nothing compared to having you here. And that is impossible. You are forever 6 years 2 months and 28 days old. Your last birthday in our arms was January 16, 2018. So how do we celebrate you? A child who never ages? Who is not here? But our child in heaven?

We find ways to create space to honor your memory. For this year we are asking big. And it is for a lifetime impact on ONE family who will also endure a lifetime of heaven birthdays for their child. A child you will one day meet and welcome into heaven. I'm asking HUGE for your birthday, Sammy. And it seems impossible. About as impossible as living through tomorrow, another birthday without you here. It feels like we are being forgotten. You are being forgotten. That sharing your memory, sharing you is too much these days. That we are old news. You are no longer important. But you are important. You are forever loved. Forever cherished. Forever ours. We love you as deep as the ocean and as high as the stars. 6 was not enough, but it will have to do. Happy birthday sweet boy.

Love your Mom
Always and Forever

It feels like we are asking too much. I've actually been told I'm asking too much. But is it too much? If you were in our shoes? If this check for $10,000 was going to your family because your child died? Would our ask be too big? Our family never received this type of financial help, but we could have absolutely used it. It would have helped our family in so many ways. And we hope to honor another forever FAMily through this gift for Sammy's 8th birthday.

Will you help us celebrate our son? Can you donate $8 for his 8th birthday? Or $20 for 2020. Or $6 for forever 6. Or give big if you are able? Can you share? Tag your friends and family? Can you help make $10,000 happen for his birthday?

Sammy's 8th Birthday Fundraiser for FAM - Fighting All Monsters

Weight of Grief

This is what childhood cancer and grief looks like. This is over 3/4 of a year of being in a hospital room. Nearly 9 of those months consecutive. This was giving up on eating right because it was hard and repetitive with the choices. And I wanted comfort food. I sat for long hours, would walk the hospital when Sammy slept and a nurse would stay with him. But the combination of high stress, eating poorly and being minimally active took its toll. I gained 40lbs in 9 months.

And then gained more in the death of Sammy. I didn't eat, but when I did, it was out. I had no capacity to cook. We were given meals for a short time. A lot of pasta. A lot of comfort foods. We started with asking for our dietary needs, but found it was hard for people sign up, as they had no idea how to make a gluten free, dairy free meals. So we removed the restrictions of the lifestyle we once followed. And the weight just added on.

In April 2016, I was at 140lbs. I was working on getting down to 135lbs. Working to get the baby weight off from Logan being born April 2015. I was eating right. I was active. I would hike often, go on walks, just find ways to move.

Here I am now. 3.5 years later. Nearly 175lbs. I lost the extra 20lbs I gained in grief. My high by end of 2018 was 195lbs. So here I am with an extra 40lbs.

My clothes do not fit. I wear men's large shirts, and leggings. As leggings fit. But my leggings are wearing out after 3 years of wearing them. And I want to buy clothes I feel confident in. Not at a size 16. I want my size 8/10 back. I want my 32 inch waist back.

But grief is a weight. Having the motivation to work out. The motivation to cook. Some days I just do not have it in me. Some days I just want to stay under the covers all day. I want to eat chips and only chips. We have food in our pantry, we haven't in years. Frozen pizzas, boxed foods, frozen meals. I used to cook everyday. Our pantry with minimal foods as we used fresh foods. But grief changed that. We eat out too much. Because it is easier than cooking. Than meal planning. Than grocery shopping. Grief has changed the way I function.

This year I am fighting grief. Taking my life back.

FAM - Fighting All Monsters has created an accountability group for parents of medically complex kids to strive for a healthy lifestyle, despite our complicated lives. This is one of the ways FAM fights for families. Recognized that many of us have struggled in the diagnosis and after of our kids complex life, and created a way to support us. To challenge us. I am taking that challenge. To be healthier and more active starting now.

We are hosting a fundraiser for FAM for Sammy's 8th birthday. Our goal is to raise what FAM gives a family suffering the death of thier child. Their hospice/child loss grant. $10,000. We were not supported in a big way after Sammy died. So we know how needed this grant is for families. Our stress was high and added financial stress did not help. To ease the financial burden allows families to work through the stress of just grieving.

Would you help our family give back, support a family suffering the pending death of their child? Donate even just $1 to FAM in honor of Sammy. Click this link to help!
Sammy's fundraiser for Fighting All Monsters

Grief with the New Year

The idea of another year without Sammy in it feels daunting. But time is a constant. It does not slow down. There is no pause button. It just keeps going. While I feel frozen in time. Trying to hold onto the past. A past that holds my son. While trying to live in the here and now, and look forward to the future. I feel pulled in two. Every minute forward, is a minute further from the moments with my son. The moment I held him. The moment I last heard his voice. The moment I felt his warm breath. Or felt a kiss from his lips. Every moment forward divides us farther. And it is terrifying.

The idea that my son only lives in memories. In photos. In videos. In the stories we tell. Is unspeakable. And every year forward, is one more year his brother grows, but he does not. And soon the little brother will out age the big brother. How does that work? And in that time we will tick towards a moment when our son has been gone from this earth, longer than he existed. And that moment weighs on me. It seems far enough off. But time keeps moving forward.

The ringing in of the new year, puts this burden on my soul. My child should be here. But he is not. And I have to keep looking forward, despite my pull to the past. It is overwhelming. And heartbreaking.

As we look forward to the new year, I just see all the time and space my child should exist. All the dreams we had for him, that went unfulfilled. An entire life, year by year, of missed moments. Watching his peers continue to age, while he stays forever frozen in time. The new year is complicated for the bereaved. I want to stay back, but time pushes me forward. A hostage to time.

#forevergotyoursix #hopeforsupersammy #childhoodcancer #childloss #grief #forever6