Sunday, May 10, 2020
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.
Wednesday, April 8, 2020
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!
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.
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.
Tuesday, February 25, 2020
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.
Monday, November 18, 2019
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.
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.
Wednesday, September 18, 2019
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|
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|
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.