That Little Brown Bag Presentation

 

For my seven year old son school project, he had to find some objects that represented him and that are important to him. He was given a brown paper bag, drew some cute little pictures on it, and placed his special objects inside. Some of them included a gaming remote as he is addicted to video games, an orange and black ball as his favorite animal is a tiger, a craft because he likes to do crafts with his mom,  a Pokémon card because he likes to collect cards, and a picture of his beloved dog Zoe. He happily and proudly went through all these objects explaining in detail what they meant to him. It was his "practice round" before he had to present to his classmates the next day. And it was so stinking cute!!! After he was done he looked at Daryl and I and said "okay now you can ask me two questions".  

Daryl asked him some question about video games. Naturally. And being the mother I am, was like hey what about that crazy awesome family you got?? Who are they? He answered-- "Well I have a mommy, Sarah. A daddy, Daryl. A baby sister, Brynlie. And I have two brothers in heaven. Brecken and Grayson."

My heart literally skipped a beat. But let me now explain. 

After the loss of our little boy Brecken, we decided as a family that we were going to go ahead and do IVF or in-vitro-fertilization to grow our family. This would allow us to, with the help of science, make sure our future babies were Alpers Free and healthy. In the process we ended with two healthy embryos that we would at some point implant and add to our family. 

Brynlie was our first successful implant. She is a HUGE joy to our family and we are extremely grateful she is free from the syndrome that took her brother. Then this fall we decided to try our last embryo. This little embryo we knew, was a little boy. Unlike our first three, who were ALL surprises to everyone, we openly talked about this little boy, who we had already named Grayson. He was going to complete our family, again knowing he was healthy and Alpers free. 

On August 24th, we went in and had our little boy implanted. Two weeks later on September 2nd we found out that our embryo was unable to successfully implant. As hard as it was to get to this point with a ton of meds, appointments, and uncomfortable shots; it was devastating to learn that our little boy Grayson was with his brother Brecken.

Grayson was always a part of our family, and always will be. That little embryo, although a tiny little speck of cells, was our finale. He was so very important to us. He was the little guy that would make our family complete. And just like that he wasn't. 

Grief is a weird thing. On the same day that Hurricane Ian was heading to the Florida shores ready to create a disaster, my hurricane of emotions came flooding back. All my memories of Brecken and losing him. All my memories of being pregnant. I LOVED being pregnant. I had saved all the boys clothes in bins downstairs and now had wanted everything that was meant for a baby to be taken by Hurricane Grief out of my house. 

We don't know what our future will hold as far as adding to our family. Most of you that know me, I had always talked about having a lot of kids. There are options but with options comes a lot of money. And that is also the hard part. Through all this grief and pain we have a lot of hope. 

For now though, I am holding my two kiddos here on earth with me tight in my arms. I am so extremely grateful I have them to keep the joy and craziness in my life everyday. I truly am. And I will always hold that special spot for Brecken and Grayson in my heart. Easton's two little brothers in heaven. 

One Year.

    It has almost been a year since my last post. I have so many unfinished drafts in my queue just waiting to be published. All those memories and stories I wanted to share and write out, but for some reason didn't finish. This last year and quite frankly the last seven years since I became a mom, have sped by faster than I can blink. They warn you about that, I know....

    I started this blog to tell Brecken's Story. I started it as a way to let you all in to my world as I walked the path of loss, change, and a whole heck of a lot of strength. But my story is not over. Brecken's story is not over. All those unfinished drafts, all those memories and "mommingstrong moments", they are still there. 

    In the future I am hoping to get back to sharing our story. My story, Brecken's story, my families story. My blog has been an incredible source of therapy and calm in some of the most unbearable moments of my life. Those moments have not ended. We still have bad days mixed in with all the incredible days. We still grieve the loss of our sweet boy everyday and want our village to remember and honor him every day too. 

I am hoping that you can continue on my journey with me. My journey of MommingStrong. 

Cause. I'm Back. 

In Three Years.

 

In three years a lot can happen. In three years a toddler can become a full blown mini adult. In three years you can welcome another sweet little bundle into a family. In three years you can gain, and lose, friendships. In three years you can learn a lot about yourself and the people you are around. In three years you can learn how to live through a national pandemic. In three years you can change and grow. 

But in three years you can also miss a ton of milestones. In three year you can miss numerous birthday celebrations and holiday surprises. In three years you can miss a lot of sibling fights and kissed boo boos. In three years you can still feel that empty gapping hole in your heart. In three years the tears still come and you still miss your baby boy more than you did the day he gained his angel wings.   

It doesn't seem real that three years ago I held my baby boy for the last time. It seems unreal to me that someone like Brecken could be take away from us. He was so dang cute. His smile lit up the world. He was so strong. I still wonder why. Why would this happen to me. I still feel guilt, and anger, and think of the what ifs and the should ofs. 

But in three years I have tried my best to remember every bit of what he left us here on earth. He left us his bright smile. He left us indescribable strength. In 16 months he changed the world for the better and I promise I will continue to spread that joy and love. Just like Brecken would want me to. 

Miss you buddy. Love you to Infinity and Bebob. 

Love mommy.

A First Fight

 

Today for the very first time, I had to break up a little fight between my kids. My nine month old was trying to eat grass and sticks and her six year old brother was trying to take the sticks and grass away. It was kind of funny because they were actually getting frustrated at each other. 

And I didn't stop them. For a full minute I sat and watched them. Yep I sat and watched them get more frustrated with each other. I soaked it all in, and I enjoyed it. 

                                                      

I enjoyed watching my six year old have someone to fight with, because I miss the fact that he doesn't have his four year old brother here to really get on his nerves. I enjoyed watching my nine month old give up a little bit of a fight, because I miss being able to see if Brecken would have put up a fight with his other siblings. It should of been the gazillionth fight I broke up. I should be grumpy and frustrated. 

But no, today my kids got into a fight and I enjoyed it. I sat back and watched and finally felt lucky that they were able to get on each others nerves. Like true siblings. Like I did with my brother and sister growing up. Because my sweet (should be four year old) Brecken should be here to do that. 

                                                 

I am not actually looking forward to the gazillionth fight between my children. We will get there someday. But I will always remember that when that time comes, I might be able to handle it with a little bit more grace. 

A Golden Birthday In Heaven

 

Happy 4th Birthday Baby boy. 

Today is your birthday. You are FOUR years old! It is seriously hard to believe! It is your golden birthday! I went to Dunkin Donuts (my favorite place ever) with your big brother Easton and he picked out an ice cream cake with all kinds of fun colors on it! I bought you a giant number 4 balloon. I also got this pretty cool sparkler candle and we sang happy birthday to you. 

And as we were singing and I looked around, I didn't see you. I didn't see that four year old little boy who should be grinning ear to ear as we sang. I didn't get to see you blow out your candles or eat a big piece of cake. I didn't get to see you open your presents. It was hard to imagine what you would of looked like or what you would be interested in. 

And my heart shattered all over again. 

Brecken, I promise you, I will never forget your birthday. I will always have a cake and candle for you. I will always sing your happy birthday. I will never forget. Ever.

Happy Birthday in heaven little buddy. I bet Papa has some fun things planned for you. 

Love you to infinity and bebob. 

Mommy

**(This was posted late- Breckens Birthday is March 4, 2017). 

My Little Technology Addicted Child

 

So the other day I thought it would be really FUN for Easton (my five year old) and myself to have a little contest to see if we could go the day without technology until Daddy got home. Since COVID, doing kindergarten virtually, and a new baby at home it has been a struggle to keep him (and myself) off the screen. I wanted to not only do it for Easton, I wanted to do it for myself. 

We came up with a fun list of things to do and started the morning by making some lemonade. According to E, the lemonade was great! Then we moved to the living room, and as Brynlie happily played on the floor, we decided to start a 500 piece Donut puzzle. Puzzles were something we have been working on since the corona lockdown, and its been fun watching him go from 10 piece puzzles to 1000 piece puzzles. We talked about how we both loved Dunkin Donuts and that we both really liked going there together. Things were going swell. 

Then about after 5 minutes of puzzle making, my little technology addicted child decided he was done with puzzle time and he wanted my phone to play on. That is when it all went down hill. The whining started, the frustration started, the anger started, and my hopes for a fun technology free day went right down the drain. 

I very soon got sick of the whining so I told him we were going to bundle up and go outside to shovel some of the snow and slush off the driveway. Distraction, right? Well after about a 15 minute struggle we were outside. The fresh air, beautiful falling snow, and a little bit of exercise felt good for the soul. A cranky, whiny 5 year old who wanted to go inside and play video games, was not. 

I was so defeated. I will be the first to admit that my child gets way too much screen time, and that it is mostly my fault. But lately its been easier to just give in and let him play. I know, big mistake. 

Now five year olds do not really have filters, but what couldn't hurt worse is hearing your five year old call you fat and then tell you that he loves video games more than you. Ouch. After trying my best to be the fun mom. The no screen time lets do a lot of fun stuff mom. The mom who just wants what is best for my kids mom.... I turned into the mom who wanted to just lay in bed and hide under the covers. 

Parenting in a pandemic is hard. Teaching a kindergarten virtually is hard. Being a maid, a waitress, a cook, a bartender with 24/7 milk on tap is hard. This week was hard. 

Momming isnt always sunshine and sparkles. But tomorrow is a new day and a fresh start. 

Right?

Oh 2020!

 

Well Hello 2021. I. AM. BACK. And it feels so good!!

I haven't written for quite some time because well ... you know.... it was 2020. 

Looking back on the last year, its safe to say it was a rollercoaster! Between the election, riots, and the pandemic there were highs and lows of all sizes. Despite the uncertainty, the frustration, the seclusion, the anxiety, and all the feels of being trapped in your home for so long, 2020 brought me one of the most important and much needed joys I have felt in a looooong time!

In August we welcomed our little rainbow baby GIRL into this world. Miss Brynlie Jean joined our family after a much awaited and lengthy IVF journey. She brought us hope amidst the fear. She brought us a gazillion smiles despite the sadness. And she brought us the most love and joy in a year full of doubt and unsettle. 

To say this past year was easy and free from anxiety would be lying. But nothing will surpass the horridly painful and brutal year 2018 gave me. 

I think I can speak for everyone that we all may be looking forward to 2021 and what this year might bring. I am looking forward to many more laughs and baby giggles. Many more firsts. Many more hugs and smiles. And a lot more blogging! 

I have missed you all! Now bring on 2021. 

Happy MommingStrong Day!!

Happy Mother's Day!!!!

To all YOU mommas, to those with littles running around, to the new moms, to the old moms, to the moms with infants, toddlers, middle schoolers, to the moms with kids college bound, to those moms who have become grandmas, and great grandmas, and great great grandmas, to the mothers in heaven, and the moms who have a little bit of heaven in their heart, to the moms who have children in their arms, and the moms who have children only in their hearts, to the adopted moms, to the step moms, to the moms who have littles growing inside, to the first time moms, and the twelve time moms, to the struggling moms, and the pinterest moms, to the stay at home moms, and the working hard moms, to the moms we know and love, and to all those mom we see walking around us.


You are special.
You are loved.
You are so very important.

Today is that special day we get a little extra credit. But we all know that every day is Mothers Day. Every day, 24 hours a day, we do our best to be a Mom. We love every single bit of being a mom, yet we struggle and have hard days as well. But we are all just doing our bestest. And thats ok. We are all amazing!

This Mothers Day has been kind of filled with a variety of emotions. I get to snuggle and kiss the 5 year old boy that I have here beside me. My heart yearns for that sweet little boy flying above me. And I feel the overwhelming excitement and joy of feeling the wiggles and moves of the little one growing inside of me.

These three littles are my world. They are the ones who have made me the Mom and woman I am today and I am so very grateful for that.

So today is for all you Moms. Have a good one, no matter what kind of mom you are.
Much love from MommingStrong.

Pregnancy Through A Pandemic

Like I said before, pregnancy after loss is hard. Through the joy, happiness, and hope comes the fears, the isolation, and the high anxiety.

But then to add to it all, the coronavirus. That scary, silent disease overtaking this world. Through this entire pregnancy I have been so diligent about keeping my baby safe. Don't eat this, don't lift heavy objects, exercise, drink lots of water, etc. And now Stay At Home!

Today I am 20 weeks! HALF WAY there!! An exciting time to go in for a check up, and the best part, the ultrasound. Although this time I had to go alone. I felt terrible when they told me my husband wasn't allowed to come with me for this much anticipated appointment. He wasn't able to be there to watch our little peanut wriggle and move around. Thank goodness for technology, he was able to use face-time for a short time to see a little bit, but definitely was not the same.

I was also scared of walking into a clinic/urgent care facility that might be filled with germs. Luckily a wonderful friend gave me a mask to wear so I felt a little safer. The clinic did a great job of escorting me to a safe space right away and it went smooth and I felt safe the entire time.

But the most difficult part of this pandemic is staying at home.... It has been SO hard! Since about the middle of March I have been good about not going anywhere. I haven't gone to Target or any store in weeks. It has been (thankfully) convenient to order groceries online and have them dropped off at my door. But then, as we call it, go through the decontamination process of cleaning it all. Using hand sanitizer, washing hands, and lysol wipes a plenty.  But I will do my best to keep myself, my baby, and my family safe.

These times are weird. Its difficult and its different. Its scary and its crazy. I hope every day that this will be going downhill by the time August comes around and I can happily and safely welcome this little one into the world. I hope in the years to come I have a good story to tell them about getting through this pandemic.

So my note to all of you, to my village. STAY HOME. Follow the guidelines. Keep those loved ones around you safe and healthy. Thank you all to those health care workers and all my fellow favorite Nurses for all you do! I am glad I am able to stay at home and not work at this time. Thank you to the delivery workers and grocery shoppers also. Thank you.

No matter what, we are in this together.

One Running Beside Me, One Flying Above Me, and One Growing Inside

I am sure you have noticed I have been a little bit quiet on here for the last few months. And that's because pregnancy after loss is scary and incredibly isolating.  It is full of an extreme amount of emotions, stress, yet with of course all the happiness and joy.

Ever since I was little I dreamed of having a large family. I "said" I wanted 6 kids!! But the moment they handed me my sweet boy after a month of being intubated and told us that he had Alpers was the moment our lives changed. Our world not only crashed, but my life as a mommy changed too.

It took us quite awhile to think about and talk about growing our family after the loss of Brecken. It was scary and daunting and I just wasn't sure just what our future would hold. After weighing out our options, it was decided that we were most comfortable doing IVF (in vitro fertalization) with PGD (preimplantation genetic diagnosis).

Although our most expensive option, we knew with this decision it would give us the peace of mind that our future children would be tested and free from the Alpers that took Brecken away.

Science is incredible. I mean really. Amazing. Baby K3 (what we have named him/her for now) might have started out in a science lab but is now growing incredibly inside of me. And that in itself has no explanation.

I couldn't be more excited to feel baby's kicks and moves soon. I love hearing baby's heartbeat. This baby is so extremely loved already and means so much to our family. I hope in the days and months ahead I can give you a little part of my story. My story of truly MommingStrong.

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.


Dad,
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.

Say Their Name: BRECKEN DUANE

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

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.

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. 

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.

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.

A Trip to the Lodge

Everyone has a place where they feel safe. Where they feel comfortable. A place where you can feel the deepest darkest hole in your heart but also feel the happiest joy. A place where you can cry and laugh in the same sentence. A place where you can be nothing but yourself but also be sitting in a group of strangers. A place that is freeing for the soul. That place, my place, was Faiths Lodge. 

My husband Daryl and I attended a long weekend in Danbury, WI at a place called Faith's Lodge early June. It is a lodge tucked away in the scenic countryside of northern Wisconsin. A place where dragonflies fly around, you hear nothing but the chirping birds, and look upon the beautiful lake that the lodge is next to. It is truly peaceful. It gives parents a time to reflect, get away, celebrate, grieve, or to refresh after the loss of a child. 

I was very hesitant to come to Faiths Lodge. As a "silent griever", I am really, really good at hiding my emotions. How would I be able to open up and talk about the darkest part of my life with strangers? Would I talk to these people? Would I spend five days crying? What would this weekend provide for me? Would it be beneficial for us as a couple? Would it just yearn for my sweet Brecken that much more?

Attending Faiths Lodge was hands down the best thing I have done for myself as I continue to navigate the difficult path of grieving my son Brecken. Even though I want to selfishly keep that weekend to myself, I cant. I have to share. Those five days while attending this retreat, I felt safe and I felt free. I was able to take away my smiley face mask and my superhero cape and be vulnerable and open. It was good for my soul. 

I met some of the most amazing friends, strangers no more. I was able to celebrate the short 16 month life of my little boy and share the hard and painful stories of the months after. We sat around the campfire and told each other our fears and our worries. But also told each other the best and favorite memories we had of our little loves. We laughed and cried, we grieved and remembered. And sometimes we didn't have to say anything at all. Because we all just got it. 

These people are my people. Right alongside me in this undesirable club. This club no one should ever have to be in. But they are the strongest most amazing people in the world. People I have learned so much about and so much from. Amazing moms and dads who think about and remember Brecken as much as I will remember their own. I thank Faiths Lodge and those I met during my weekend there. Brecken has some cute and strong little friends to play with in heaven, and that in itself gives me comfort. 

You Mama, Are Not Alone

I am a member of a club that I really don't want to be a part of. A group of moms (yes of course fathers too) who lost a child or children. Not a single person, on this earth, should be a part of this group. No One. Today is National Bereaved Mothers Day. A day to recognize and give support to those strong mamas who have a gaping hole in their heart that will never go away. Those moms who have had to say good bye to their babies way too early. The moms who carry the love for their children, no longer in their arms, but in their hearts.

Yesterday we decided to have a fun family day at the zoo. It was a beautiful day! But as I sat and watched my husband and son run around the playground having fun, I soon recognized that deep, ever so recognizable pit in my stomach. I watched all these moms running around with their small children, holding and kissing their babies, and making sure they had their little's in sight. And for that moment that hole in my heart was ever so present. I wanted to be running around with MY sweet little Brecken while Daddy and Easton had their fun. I did not want to be sitting here. But the more I thought about this, the more I thought about how I probably am not alone here.

My family also attended a wonderful Children's Hospital Memorial service this afternoon. We got to bring a picture, read Brecken's name out loud, and light a candle for him alongside families for 70 other children who have passed away all too soon. After the service we released butterflies. And I got to meet a few other bereaved mothers who, unfortunately, are on this grieving journey with me. And whether I be at the playground, the zoo, the grocery store, or a special event I know I am not alone.

This "club" I talk about is not a real club. Its not formal. Its just a name I give it. But the mothers I have met, that are a part of this group.... They Are Amazing. They are the strongest women I will ever know. These women are understanding and loving and welcoming. They are always there to lend an ear or give a hug. And, well, these moms JUST GET IT. They get the pain and sadness that come along with that gigantic hole in our hearts and follow the same (yet so different and individual) rocky path of grief moving forward.

I do not want to be a part of this club. But I am. And although the sacrifice and heartache that cost me my membership, I need this club now. If there is any place where I feel connection and understanding, these are my people. I want to hear their story. I want to know about their children and how they lit up this world just like Brecken did. And I want to be there for them, just like I know they will be there for me. I am on this journey right along side them no matter where we cross paths.

Today is to recognize and acknowledge that you Mamas are STRONG. You are AMAZING. You are COURAGEOUS. You are BEAUTIFUL. And to those Moms I have in my life, I am glad I do.

You are NOT alone.

And Just Like That Your FOUR!

Last night as we were driving home, I glanced behind me to check on Easton. After a fun, exciting, but very busy holiday weekend, he had quickly fallen asleep in his car seat. But this time I took just a little longer to soak up this sweet baby of mine. Yet, he wasn't my little baby anymore, he was tall and handsome and well... all grown up. All the emotions of the day I brought him home from the hospital flooded my mind and the thought that tomorrow he will wake up as a FOUR year old. How did my sweet little tiny baby become such a grown boy?

He was born on earth day and he certainly is my nature loving kid. He loves being outside every second he can. He likes finding sticks and taking walks and spending his afternoons at the playgrounds. He is incredibly smart. After telling him the other day that he was officially enrolled in 4PreK this fall, he told me that he doesn't need to go to school cause he knows everything, even telling me what 2+2 was. (he was correct and said 4 as he counted properly on his fingers). He is independent and strong willed. I constantly have to take a step back when he informs me he can do it himself. And well bargaining is getting extremely difficult these days.

                                              

Although I am biased, the love Easton has for his Mommy, is by far his best trait and simply my favorite. He wakes up and loves to snuggle buggle all morning. He puts up with my million jillion kisses and hugs he gets every day. And he is always finding hearts everywhere he goes to remind me that hearts tell us we love each other. This little boy amazes me every single day. Not a day goes by that he teaches me something new. And I couldn't be more proud to be his mama!

But I would have to admit that parenting him through the last couple years has been the most difficult. Going through the loss of one child while trying to nurture, comfort, and understand the other child is complicated. I often forget that he is grieving too. He has bad days and he has good days. There are days when I wonder if he understands what has happened and days when he says something that tells me he absolutely gets it.

                                               

He DOES miss his baby brother and his Papa because he tells me. He wants to know where the stairs to heaven are so he can visit them and he wants to know when they are coming back. And he very much understands why this world is sad because they are gone. But he has been a huge reason why it has been easier to keep moving. He keeps a smile on my face and my heart more full. And I am thankful every single day for him.

So my sweet, amazing, smart, funny boy. My Easton Paul. My FOUR year old. Always know momma loves you more than you know. Always keep that sense of wonder and curiosity. Keep us laughing with your witty sense of humor and infectious laughter. Stay strong and brave. Always and forever know you have amazing guardian angels watching you from above. I cant wait to share more and more birthdays with you.

Love you to infinity and bebob. 

To My Sweet Brecken Boy

We are all here to search for our purpose in life. That one thing that feels right. That makes you happy. That moment for me was the day I saw two lines on a pregnancy test. I believe moms have this astounding ability to love a little human the second she knows that baby is growing inside her. Its a unique and bonding love. I had no idea what exactly these little humans looked like growing inside of me, but I knew at that very moment I was going to do everything in my power to protect them. I had officially received my superhero mom cape. And we were ready to face the world.

I have been extremely lucky to have felt this moment two times with two amazing and wonderful little boys: Easton and Brecken. My two little boys have wholeheartedly stolen every piece of my heart. And I am so incredibly lucky to be their mom. They are my world and they are the reason I am the person I am today. I thank these little boys everyday for giving me my purpose and for giving me what I refer to as my superhero mom cape.

But with Brecken, I felt this love, purpose, and then some. Its not like he was my favorite child. Or that I loved him more. Or that I even treated him differently. It was this unexplained form of love. Was he here to challenge me or teach me something? From the day he came into my life, I had wrapped him extra snug in my mama cape and held him close. I snuggled with him, spoiled him, and overprotected him a little more. I think I knew from the start he was here to change my life. That this boy was going to show me things that I never knew existed. And my sweet little giraffe baby did just that, and then some.

Brecken was always very attached to his mama. Which I secretly loved. Every single bit of it.  Easton was always a little independent child, a trait he masters to this day. I never spent a night apart from Brecken up until his seizures started, and then I never left his side. I looked forward to watching the bond that him and his brother would have one day, being so close in age. Brecken had a smile that would light up the room, he was a charmer and was more than willing to show you his cheesy grin. He brought this happiness and sunshine to our family like no other. And I couldn't get enough of those cheeks and toes.

When Brecken started having seizures at 9 months old, that love was exemplified, but it changed. I knew I had to stay strong for him. But the day he was diagnosed with Alpers Syndrome, a disease that had no cure and an unimaginable outcome, I felt my mom cape get ripped off my back. This little boy, who's so called superhero mom, would not be able to save the day. I was not only scared and lost, but what could I do to put that superhero cape back on and get through this.

It is indescribable the way your heart, mind, and "mom love" changes when you know the gates of heaven are opening up for your child. I believe that love for Brecken was special all along, from the moment the two lines showed up, and the 16 months and 14 days he was here in our arms. And even though I wasn't able to save the day. I WAS his superhero all along. I fought for him, cried for him, advocated for him, smiled with him, learned new things for him, and most importantly, was as strong as I could be for him. (#mommingstrong)

Brecken, what I wouldn't do to have one more snuggle, to give one more kiss on those sweet cheeks, one more time hearing you say MaMa, one more time hearing you cry when I left the room, one more time to tell you I love you.  And one or 50 more birthdays to celebrate with you. Brecken you changed my life. And you changed the world. Thank you for leaving that superhero strength with me. I wear my superhero cape proudly. And thank you for giving me the chance to be your Mommy. Miss you more that words can say.

Happy 2nd Birthday Baby Boy. Smash some cake up there. Love you to infinity and bebob.

**Brecken Duane Kariniemi was born March 4, 2017, 9 lb and 8 oz of pure love. **
*Photography by Casie Carow Photography