Monday, November 18, 2019

One Year, And I Miss You Dad

      You know on those really unrealistic medical TV shows, when the family is waiting in the waiting room, the doctor walks in and says "I'm sorry we did everything we could".  One year ago it wasn't just a TV show, it was real life. And it sucked. Just exactly four months before, I had lost my sweet little boy and now I got the news that I had lost my dad.

Just moments before, I was happily shopping at target with my husband and son and I got the call that my dad was down on the floor at my parents home and they were doing CPR... I knew at that moment that my world was going to crash.... AGAIN. With Brecken I knew months in advance that I was going to lose him. With my dad I never got to say good-bye.

To be honest, I have had a difficult time grieving the loss of my father. This complicated grief that has been piled on like a stack of books. Trying to process one but also the other. Two different people, two different relationships, and two different ways I got to (or didn't get to) say good-bye. I often find myself making excuses for my dad being gone. He is on a trip, he is at work, something or anything to justify the fact that he just can't be gone.

I miss my dad like crazy, and I yearn for that moment that I could have told him that I loved him. But I am still angry about him leaving. I am angry that his health wasn't more important to him. I am angry that he didn't take better care of himself. I am angry that he may have had a chance to prevent a heart attack this early in his life. I am angry, and that can be OK. My grieving process with my dad has been a slow one and different in many ways. But I am incredibly proud of who my dad was and what he did for the city of Hudson and I am proud to be his daughter.

Easton misses you. He misses yard work days with you. He misses telling you about his day at school. He misses eating ice cream with you. He misses his papa.
I know that you are taking good care of my sweet angel Brecken. Hold him tight, kiss him goodnight, read him books and tell him all about giraffes.
I miss you and those corny, somewhat unfunny jokes you always told. Those ones that went over moms head. Then I had to explain. I miss you lighting up when you were with my kiddos. I miss spending time with you in the living room just watching football.
We will always remember you and will remind Easton and all your future grandchildren what an awesome guardian angel Papa they have.
And just know we are trying really hard to take good care of mom.
Love you.
Your firstborn.

Tuesday, October 15, 2019


It has been 15 months since my baby boy left my arms and gained his angel wings.  Even just fifteen months ago, I often feel like it was yesterday, but also kind of like eternity. Fifteen long months of on and off waves of grief and that giant hole in my heart. Child loss is not fair. I am forever a mom of an angel.

October is an important month for moms, dads, and families who have experienced a loss. October 15 is National Pregnancy and Infant Loss Remembrance Day.  October 9-15 is Child/Baby Loss Awareness Week. The entire month is filled with memorial walks, candle lighting, and events to honor and remember all those sweet little babies and children that left us all too soon.

There are so many different ways to honor and remember loved ones. Here are a few of my ways that Brecken will forever be remembered!

SAY THEIR NAME: Brecken is often talked about in our home. We say his name with a smile on our face and we say his name with tears in our eyes. But we will continue to say his name. And I would love for you to say his name too. Brecken was always..... Remember when Brecken.... When Brecken was a baby..... While Brecken was in the hospital.... Ask away. Say his Name!

Remember that even after a couple months, even after years, during holidays, during certain dates and times, we still need your SUPPORT! I have to say, I have amazing friends and family. I continue to receive little notes, text messages, hugs, or gifts that help me through. I never know when something will send me a huge wave of grief or sadness. And sometimes I seem to be doing much better than I may be doing on the inside. But I cant tell you all enough how much your love and support mean to me, and to all those moms and families dealing with their loss.

Know there are RESOURCES to help. No one has to grieve alone. Although sometimes I find myself doing a lot of my grieving and crying alone, I share a lot here with you. Because I cant do this alone. Attending Faiths Lodge and meeting other amazing families who have experienced loss as well was by far the best thing I could of done for myself and as a couple. I am also a member of an online group on Facebook, where I have met other parents who are going through exactly what I am going through with Brecken and his genetic Alpers Syndrome.  Other groups like Compassionate Friends and Therapy groups also have been helpful. There are so many local and global resources!

HONOR YOUR CHILD: We honor Brecken in so many ways. We have attended Childrens Hospital Walk for Amazing, Mitochondrial Energy for Life Walk, and Faiths Lodge Hope Walks and Rolls Memorial walk. We have our annual Birdie for Brecken golf tournament raising money for places like Crescent Cove and Faiths Lodge. We attended a weekend getaway at Faiths Lodge. We celebrate his birthday and honor him on the day he gained his wings. We always will remember our sweet boy when we see a Giraffe, and always will have Raph The Giraffe hanging in our living room. We look at pictures and remember his smile and laugh. 

Light a Candle. October 15 is International Wave of Light night. For Brecken or for any other baby or child you know, light a candle.  Brecken and all his little friends will look down from the skies and see all those who are thinking of them. I can see Brecken smiling now :)

To all those other Mamas out there, I think of you, I am here for you, I am with you. Love you.

#breckenstrong  #mommingstrong

Wednesday, September 18, 2019

What is Alpers Syndrome?

M I T O C H O N D R I A L  D I S E A S E.  A L P E R S  S Y N D R O M E.

You can imagine it is hard to understand such big words, let alone someone telling you that it's now part of your child's new diagnosis.

Alpers disease is a progressive, neurodevelopmental, mitochondrial DNA depletion syndrome that often happens in early childhood characterized by symptoms like seizures and liver disease. This disease affects one in 100,000 people. There is no cure, and no way to slow progression.

January 19, 2018
How in the heck was I supposed to understand this? I woke up the morning of January 19, 2018 to good news. After morning rounds Dr. Brockman, Brecken's pediatric doctor, came by and told me that we would be taking Brecken's breathing tube out! I was so excited and hopeful that we were making progress in the right direction. After successfully removing the breathing tube, I got to hold my baby boy for the first time after three weeks, and in that very same moment the genetics team walked in. And those words forever changed my life.

The day I thought we were making progress, was also the day that I was told my child had Alpers Syndrome. The day I thought my baby was healing and getting better was also the day that they told me he had a life threatening disease. The day I got to hold my baby for the first time in three weeks from the start of his symptoms was the same day I realized I needed to hold my baby boy as much as I could because he was not going to be here with me for much longer.

Individuals with Alpers Syndrome usually do not show symptoms at birth and develop normally until the first weeks or years of life. First onset is usually classified by a seizure that most times does not respond to medication control. Other symptoms include loss of muscle control, low muscle tone, loss of developmental milestones, visual loss, and liver failure. Alpers syndrome is a mitochondrial disorder affecting the energy source of the body, it is like their body is running on an empty battery.

January 21 2018
So as I sat there, after they kinda laid this all on me and walked out the door, with my sweet little boy in my arms, facing what might have been an impossible fake unrealistic new reality. What did this mean for my innocent baby and how was I going to do this? I was a nurse, but not to my own child. And how was I going to tell my family and friends that my child was going to die?

Mitochondrial diseases are genetic. That means that Brecken got the recessive gene from both myself and my husband. A 25% chance. Not only did that affect Brecken, it could affect Easton, our then two year old, as well as our future. Would I be able to fulfill my volleyball team wish of having a large family? The day the genetics team came and told me my baby's diagnosis was the day I felt my future get ripped out from underneath me. So I sat there, held my baby in my arms, and cried.

Alpers Syndrome is what took my baby away from me. Brecken's body was unable to keep up the energy to sustain life, and eventually he went into liver failure. This week is Mitochondrial Awareness Week and I will never stop raising awareness for what affects so many people and children like Brecken. I encourage you to educate yourself. Learn something new. Light a candle. Moving forward I hope to educate you and others on what exactly has been a life changing part of our journey and world.

And I pray. One day. There will be a cure.

Friday, September 13, 2019

My Baby is Going to School

Monday I sent my four year old off to his first day of Pre-K. My original plan was to keep him and his brother home as long as I could, because who wants to send their kids off into this crazy world.  After the loss of Brecken we decided it was best for Easton (and me) to attend school with friends and a teacher besides his mom. Because to be honest, he started to not like me teaching him, and that wouldn't work if I kept him home. 

The first day I sprung the news to him that he would be going to school he politely informed me that he was in fact NOT going to school because he knew everything already. Well then. So I followed up with a question. If you know everything than what is 2+2?  He then very confidently responded with a ... mom that is easy, its 4.  Um. OK. But your still going to school.

I spent the last few weeks getting him all ready. Cute over sized backpack... check. Snacks... check. New school clothes and shoes that actually fit... check. School supplies... check. Convincing him that he actually had to go to school.... hard but check. The only item unchecked was finding the mom strength to let him go. 

It was so much harder than I thought. After I watched him balance on that magical yellow line and go with his teacher and all his new friends to their classroom, I lost it. My baby boy that day wasn't so little. He was confident and happy and ready. Now don't get me wrong, I was excited for him. I am so happy this little chapter of his life is starting. But it was really really hard. 

It was hard because I got to send my four year old off to school but I will never get to send Brecken off to school It was hard because I got to make the cute class of 2033 shirt for Easton but I will never get to make a shirt for Brecken. It was hard because I got to watch Easton walk off with that over sized backpack and see the excitement on his face, but I wont ever feel that with Brecken. I got to check off all the boxes with Easton, but I will never get to check those boxes off with Brecken. So it was an exciting day but it was a hard day.  And that is OK.

One week down and school is going great. Easton loves it. It has been bittersweet but I stay strong for Easton. And I know his little brother is up in heaven cheering him on too.

Happy School year to all those kiddos and parents! Be strong. 

Thursday, July 18, 2019

One Year Baby Boy

Today officially marks one year, The one year angel anniversary. I may still be in a bit of a fog to think that I could blink and maybe, just maybe, I can still wake up. Wake up to that smiling happy little two year old that should be toddling around my world.

But one year ago I had to painfully say goodbye. I had to accept the fact that my sweet little boy was going to gain his wings to heaven and fly. Fly away from his mommy. One year ago today I rocked my baby in my arms for the last time. One year ago I held his little hand and told him that everything was going to be OK even though I knew it really wasn't. One year ago I sang him you are my sunshine for the last time. One year ago I found this unimaginable strength to carefully hand my little boy to his daddy as we watched him take his last breath. One year ago today I started living with that huge hole in my heart and started on this indescribable journey of grief and survival.

It has been a year but I miss like him like he left yesterday. I miss everything about that strong boy. I miss kissing him, hugging him, talking to him, and holding him. I miss his deep little belly laugh when daddy did jumping jacks. I miss the way he played his toy piano with his toes. I miss the sweet moments he shared with his big brother. I miss the park and zoo adventures we never got to go on. I miss all the milestones and firsts I never got to see and never will be a part of. I miss it all.

And I miss being his mommy.

Today marks the end of the many firsts. The first birthday without him. The first holidays without him. The first family vacations and trips without him. July 18 will never be the same. It will not just be a date on the calendar but a painful and hard reminder of what I lost that day.  Not a day goes by that I don't think about Brecken. I planted some beautiful flowers on his "special spot" that my dad had picked out for him. I visit his spot almost every day. I talk about him to Easton as to never forget that for 16 months he WAS here with us.

And today I find a little bit of joy. Joy that I got to have him in my life for those 16 months. Joy that the world got to know Brecken and that Brecken changed the world. Joy in knowing how giraffes are that happy reminder of him, and how others think the same. I find peace that he is free. Free from the Alpers Syndrome that took him away from us. I am comforted in knowing he is no longer attached to numerous tubes and medications. No more appointments and hospital stays. But most of all, he is safely wrapped in the loving arms of my dad.

This year was hard, it was challenging, it had its ups and downs and curves and waves. And now we move forward to the next year. And to always remembering Brecken.

Forever and always baby boy. Mommy loves you.

Friday, June 21, 2019

Raph the Giraffe

Most of you know that giraffes have held a very special place in our lives and a huge place in Brecken's story. We have accumulated everything and anything giraffe. Our collection continues to grow, but it will never get old. As many of our pictures and stories with giraffes in them have become evident, most of you have not met THE "Raph the Giraffe". He is no ordinary giraffe. He is special and he is amazing.

And here is his story.

When I was pregnant with Brecken, a giraffe named April (who resides at Animal Adventure Park in New York) became an internet sensation as millions watched her through pregnancy and birth on live streaming. April and myself were due with our babies on the same day. As we both went over due, her much much longer than me, it was often joked about that maybe I should stream my pregnancy and birth just like her. Although I never agreed to it, it was the beginning of the giraffe theme we gave to Brecken.

On March 4, 2017 when Brecken made his entry into the world, his wardrobe and our house was quickly filled with giraffe blankets, stuffed animals, and giraffe toys. In January of 2018, when Brecken was admitted to the hospital with uncontrollable seizures, his auntie Megan walked in the PICU with a giant 4.5 foot stuffed animal giraffe. She named him Raphael, the patron saint of healing, and around his neck, a key. The key to strength. And that was the day "Raph the Giraffe" was named.


Raph stayed at the bedside of our sweet little Brecken every day. He attended morning report with the doctors, nurses, and team. They dressed him and talked to him. He came home with Brecken after their 45 day stay in the hospital. And he went back and forth with Brecken to many more hospital stays. His love and strength followed. Raph was at home with us when Brecken gained his angel wings to heaven and the day we laid him to rest in his "special spot". Raph holds his permanent residency in our living room. Right where his love, strength, and guardianship will remain.

We love our Raph. He certainly is a special one.