Friday, December 28, 2018

It Started With A Twitch...

December 28th, 2017. A day I will never forget. To most it was just another day in the midst of the holiday season, but for me it was the day that changed me as a person and a day that changed me as a Mommy. I had spent the day with my two little boys, enjoying the new presents after the fun little Christmas we had together. With a two and a half year old and a nine month old who was very attached to his mommy, life could get chaotic.  But, I was in love and I was happy and I was ready to bring on the year 2018.

And then that twitch happened. 

We had just finished giving the boys a bath and getting warm jammies on, ready to settle in for the night. As I was nursing Brecken to sleep I noticed his arm start moving. It was like a very rhythmic shoulder shrug in his right arm. And the first thing that my mommy gut (and maybe a RN background) thought was... its a seizure. The second thing I did was call my mom. After panic set in I called the nurse line. And when I lost control 911.

The paramedics came to our house to take a look at Brecken and gave us what felt was the worst advice in the world. "Just monitor it." Something did not feel right but I was outnumbered three to one and decided to just let it go and watch him overnight. Which now I realize I should have listened to my own instinct. Arrrrggggghhhhh. They left and we all fell back to sleep. A couple hours later I woke up and tried to wake Brecken up. The twitching had gone from his arm to his shoulder, back, other arm, and very quickly became his whole body.

And so we called 911 again. And the two EMT's that showed up the first time were at our house again. As much as I want to say they were helpful, they were not, and it was quite frankly the worst medical encounter of my life. When your world is turning upside down and your baby is not acting "normal" it would have been nice to have your feelings validated... but another day another story. Since we had a two year old sleeping at home, Brecken (and myself) took what seemed to be the longest ambulance ride ever to Children's Hospital in St. Paul. Watching my sweet little tiny boy seizing, strapped into the stretcher, knowing I couldn't hold him or help him was so hard. And I had NO idea what really was in store for him, me, and our family. 

The second we walked into the hospital, I swear there were angels around, they were disguised with nursing scrubs. The second one of the nurses laid eyes on my little boy, without hesitation, had me immediately pick him up and bring him to a room where they started work on him. Mommy gut was 100% right, he was having a seizure, and FINALLY I was being heard. They were starting IV's, taking labs, and giving medications. He was having full body seizures and they couldn't stop them. He got a CT scan and an MRI, and within just a few hours of being admitted, was in the PICU at Children's hospital, intubated (on a breathing tube), and extremely sedated. And I couldn't even hold him. 

I can vividly remember every second of this night like it was yesterday. It turned into being a horrible night and little did I know it was only the beginning. That day is when this crazy, emotional roller coaster of a new life started. This is why I am here now, the person I am today, sharing my story, and why this blog happened. Today, one year ago, is the first day of the many "firsts". And the first hardest day of the rest of my life. 

**For those of you that have been on this journey since day one, here we go again. For those of you who have joined along the way. Welcome, I am glad your here. Your my village. 
*Photo Credit : My awesome cousin Amy Knutson :)

Thursday, December 27, 2018

Grieving Through the Holidays

I was not looking forward to the holidays. I was dreading it since the day I lost my little boy. And after the unexpected death of my dad, I really didn't want to celebrate anything at all. I was thinking all the stress and hype leading up to the days and events would be the worst of it. Having to encounter all the Christmas cheer, the holly jolly songs, the decorations and light displays. Last year I was so excited to start traditions with my boys. They loved Christmas. And I enjoyed watching them open gifts, decorating the tree, and watching the magic they brought to the season.

We had four different family celebrations to attend this year. I thought maybe since we would be doing so much traveling I would be too busy to get upset. I was trying to keep myself occupied by crafting the perfect gifts, making food, wrapping presents, and well just trying to remember my sanity. I was determined to make this holiday the best it could be for Easton. Because after all that is why we still went to go pick out a tree, made lots of delicious cookies, and visited Santa. To make this time magical for him. And I think it is safe to say that he was filled with joy this holiday season.

But as Christmas was wrapping up and the holiday was coming to an end. The grief and pain wrapped around me and put me in a choke hold. And I was done. My grief comes in waves. And often times, something so little can trigger feelings so ginormous. And all of a sudden I felt empty, and so alone. As I watched family get gifts they loved and enjoyed, I was reminded that the one thing I wanted most was the one thing I cant have. And that was my sweet baby boy.

Christmas will never be the same. And not a moment will go by where I wont think about my baby boy and how he should be here with me. How he could ever so simply fill my arms and bring back that missing joy. I am sure that over time, the holidays will get easier. But the hole in my heart will always be there, and so will that stocking for Brecken by the fireplace.

This year I just didn't feel the joy. And well, that's OK with me.

Photography Credit : Casie Carow Photography

Sunday, December 16, 2018

My TWO Angels, We Miss You

On July 18 I lost my baby boy. And on November 18 I lost my dad. Losing your dad and your baby in four short months is extremely hard. But having to explain to your three year old that he lost his baby brother AND his Papa in just four months is unimaginably painful. I am pretty sure, somehow, I have convinced myself that I am dreaming. I am STILL waiting for that moment when my dad walks down the stairs with my sweet 21 month old boy and I WAKE UP.  I wake the @#&*% UP and stop living in a nightmare. 

Unfortunately, I am also fully aware that I wont wake up from this nightmare. This is my unfortunate reality. I am living, breathing, alive and trying to survive a nightmare. Something I absolutely hate to admit. Your body has this incredible way of putting yourself in "shock fog" after something so traumatic. I often find myself just going through the motions. Wake up, get dressed, eat, sleep, repeat. If only it could be that simple. Its not. Just when you think you might be able to start picking up the pieces, a tornado comes barreling in. This really really sucks. I can't sugar coat it, I can't tell you its anything else. It is unfair and it is unreal. My heart hurts so bad, it stings, and it's just so broken. The worst part about death and heartbreak, its irreversible.

Grieving is complicated. And it gets really complicated when you are blasted with two very close losses together. I often find myself grieving not only for myself but for my three year old, Easton. I am sad and angry for what he does or does not understand. I hate that my three year old wants to visit heaven. I get very sad when he asks where the stairs to heaven are. I do not like that he fears getting sick because sick people die and go to heaven. I do not like that he is so in tune to a funeral on TV and asking about the "special box" that is on display. And I am devastated for him that in four short months, he has had to say goodbye to two incredibly special people in his life.

I am not sure how much he really grasps at a three year old level. I have been truthful and real with him. I allowed him to say goodbye to his baby brother and his Papa, we talk about them often, and I answer the many, many questions that will pop up at random times of the day. I already miss the many days or yard work they had left to do, the numerous sky high Lego towers they needed to build together, the many little brotherly fights I am yearning to break up, and the messes they should be making together. I miss my dad, but what I miss more is Easton's Papa. I miss my baby boy, but I really miss Easton's little playmate. A little bit of me thinks that Brecken had a bigger part of my dads heart, that maybe they needed each other a little more than we could ever know. I hope they are mowing the heavenly lawns together. Building super tall Lego towers together. My dad snuggling his sweet grandson as he rocks in his rocking chair, giving those chubby cheeks and toesie bosies lots of kisses for me.

We may have two beautiful angels, but we miss these two here on earth an indescribable amount.
Love you Brecken boy. Love you Daddy.

Friday, November 16, 2018

To My Village, I Thank You

As the thanksgiving holiday approaches and I look at being thankful, I definitely have a lot to be thankful for in my life. If I look at the last year, I am having a hard time convincing myself I should "be thankful". As a grieving mom who lost a huge part of her heart, I often think being thankful just isn't right. I cant be thankful, I shouldn't be thankful. How can I be thankful this thanksgiving with a broken heart and half empty arms?

But I am. I am thankful for each and every one of you. As I have had the most difficult time getting thank yous cards out, there are special items and gifts around my house that remind me of my sweet angel, but also remind me that right now, this thanksgiving holiday, I am thankful for "MY VILLAGE". For every single one of YOU.

This last year, myself as well as my family, have been blown away by the amount of support and love that has been blasted our way. Whether that be a simple card saying hello or through the extremely generous donations, your thoughtfulness and generosity is astounding. From beautiful photography to blankets, handcrafted jewelry to paintings, wind chimes and garden art, cards and everything giraffe. From open arms and kleenex boxes,warm delicious meals, a listening ear or a hot cup of coffee, to phone calls and text messages. We are so grateful and blessed by your kindheartedness.

Most importantly, I want to thank you for reading this. I have been humbled by how many of you follow and read my blog. It has been a HUGE part of my grieving journey. It has been a place where I can go to be vulnerable and raw about my thoughts and feelings. And I appreciate your patience and support as I do that, because sometimes its really really hard. As time and feelings allow, I am hoping the posts will come more often. But keep checking in as I know many of you do!

I believe people walk in and out of our lives for a reason. So many of you have walked in the last year and have left huge footprints that will never be forgotten. For those of you who have been here from the beginning, our bonds only grow stronger. Our little Brecken angel will never be forgotten and is SO loved. It often brings me comfort knowing that when you see that little giraffe staring at you in the window, you tell me you think of Brecken. And that is just what I want to happen.

So this Thanksgiving be thankful. Thankful for those close to you. For those of you who keep me going, keep me up, and keep me moving. It might be minute by minute but I am thankful. I love you all. 

Wednesday, September 12, 2018

Living On Empty

Grief is hard to explain. It's hard to talk about. And we'll it's hard to do. It shows up at any second of any day and reminds you of that gigantic hole in your heart. The feeling of your empty arms and overwhelming pain. Grief is a journey. Mine started seven months ago. When Brecken started twitching as I was nursing him to sleep. Its been through his hospitalizations, diagnosis, illness, saying goodbye, and the days after he has gained his angel wings in heaven.

They say time will heal. I don't think my broken heart, my missing piece will ever heal. Over time it might get a bit easier to live with. But it's never going away. Nor do I want it to. I will never forget the 16 months I had with my sweet little Brecken. That hole is there to remind me of that. Some days are easier than others, some moments are unbearable, as if I might not know how to move on, and through this all, sometimes I find my joy and comfort.

I am not really sure if I even could come up with the right words to describe the grief you have after losing your baby. It really is indescribable. My grief is sadness and tears, joy and smiles, anger and doubt, worry and hope. My grief is the feeling of an apple corer to my chest. Grief is the confusion I feel going to the store to see the world seemingly just going on with life. Grief is visiting my baby's resting place and finding myself yearning for a shovel. Grief is the sadness of doing laundry to notice there are no little clothes to fold and put away. My grief through the conversations and phone calls and letting go of medical equipment. Grief is the nauseating lightheaded feeling I get as I watch the giraffes at the zoo. Grief is the hustle and bustle of packing everything we can into a day to keep ourselves busy. And some of the hardest grief is through the conversations and questions of an inquisitive three year old who wants to know where we can find the stairs to heaven.

I would have to say that this post was hard. That's why it might of taken so long. What I would give right now for one more snuggle, one more kiss, one more smile. Anything. Some days are better than others, but I miss Brecken so incredibly bad. Every second, every minute, every hour, of every day. I am grateful to have my spunky three year old to keep me going. To keep me smiling. He definitely knows how to keep my lap warm, my arms full, and my days busy.

The days are getting longer and quiet. The dread of the long cold winter season and the holidays is beginning to knock softly on the door. This journey of grief is just beginning. I am still learning as I meander my way through life and this path I found myself on. It might be a hard one. But I know my Sweet Brecken Angel is with me every step of the way. 

But they say GRIEF is LOVE. And well I have A LOT of love.💛💛💛💛

Thursday, August 2, 2018

Broken Hearts and Empty Arms

There are no words and I don't think I will ever find the words to describe the moment I held my baby in my arms as he earned his wings to heaven. It should never be a thing. It should never exist. It's a horrible wicked nightmare that you just want to wake up from. I want someone to take a paddle and slap me across the face and tell me to wake the &#^% up. But no, I am awake, this is real life. And I am unimaginably heartbroken.

The morning of July 18th will be a day I never forget. It will be a painful remembrance of the day I had to say goodbye. I have been warned about this day. By the numerous doctors and nurses through the last seven months as Brecken has navigated the difficult path of Alpers Syndrome. As much as they "prepare" you for that day, you will never be ready. A day I knew was coming but always ignored the reality of it. WHY me? and WHY Brecken?

For most of the month of June, Brecken had been in and out of the hospital. And it was the last hospitalization we learned of his liver dysfunction and rapid progression of his disease. As we left the hospital for the last time June 29th, we made the decision we were not going to go back. We decided to put Brecken on hospice and care for him in the comfort of our own home. A decision that we made as a family, however having a nursing background, helped us guide our choice. I have to admit it was overwhelmingly terrifying.

Brecken's symptoms kept progressing. He lost his ability to smile and open his eyes. He slept 24 hours a day on his Bi Pap machine. And his body was ultimately giving up. It was extremely hard watching your baby boy fight for his life, knowing there was nothing myself or the medical team could cure or fix. There was no cure, no fix, and my baby was losing his fight. Something I was forced into accepting. Accepting my worst nightmare.

But as the moment came, the quiet morning of July 18, 2018, I held my sweet baby boy in my arms, rocked him, and held him tight. I sang him You Are My Sunshine, and told him it was OK, mommy and daddy were with him. A moment that was the hardest moment of my life. A indescribable painful hurt in the deepest parts of my soul. He was snuggled in close as he peacefully took his last breath and earned his wings in heaven. He fought so hard but he left too soon.

Brecken is MY superhero. He was a fighter. He is the strongest person I know. And he left that strength with me here on this earth. He gave me the strength to move forward. To be able to go through the motions of planning a funeral and celebration of life service. The strength to make a special resting place for him, his special yellow box. He gave me that strength to wake up in the morning and keep living. The strength to go to the park with his big brother. The strength to write for all of you, as raw as it gets. The strength that most people will never know of, and should never know about. Its a special strength, but I thank you Brecken. Thank you for showing me #breckenstrong. I miss you everyday and I love you "to infinity and bebob".

Friday, July 13, 2018

Finding Joy in the Journey

It was a wide mix of emotions bringing Brecken home from the hospital this time. A little bittersweet. After an exhausting seven days in the PICU, we came home June 29th. With our sweet Brecken by our side. We were back as a family of four all under one roof, exactly how its supposed to be. When you spend so much time at the hospital, HOME has a way of becoming a sort of medicine. Really good addicting, nostalgic medicine. And so we settled back into home, into life.


Brecken has been doing good since coming home. The lactulose medication is helping his ammonia level stay down, as far as we know,  because we have plenty of dirty diapers to change! He still is very very sleepy some days, but luckily sleeps through the night with his Bi Pap machine. But as mentioned, his liver will continue to fight against him and unfortunately is failing him. We have decided to move forward to a more comfort cares approach for him. Focusing more on his comfort and forgoing a lot of the things that are more of just busy and unnecessary for him. We have a wonderful Children's Palliative and Hospice Team that has taken on Brecken and our future wishes for him. Which will also allow us to have 24/7 help and support as we try to keep him happy and comfortable at home in the hard days to come.

Time has become the most valuable blessing since coming home. Every second, every minute, every hour, every day. And it has been with time that we are finding the joy in this journey. A seven month journey that has been nothing short of difficult, painful, heartbreaking, stressful, and hard. This journey that has made me a stronger human being than I ever thought existed. The journey that has given me the time and opportunity to think about a lot of things. To learn a lot of things. And no matter the heartbreak and sadness we strive focus on our Joy, our sweet little Brecken Duane. 

The joys while we soak up ever smile and laugh as we count to five or say sooo big. The joy of the sweet snuggles holding his chunky, squishy little "big boy" body. The joy of getting to see those eyes open up and watch Easton and Daddy running through the living room playing superheros or do jumping jacks. The joy of family and friend visits. The joy of arts and crafts projects with big brother. The joy of holding on to chap stick and whatever tube he can get his sweet little hands on. The joy in taking family photos together. The joy of stepping outside and watching big brother play in the pool or taking a walk around the neighborhood. The joys of dancing and singing in the living room with Mommy. And also the joy of changing dirty diapers, the suctioning, the med giving.
We found our joy. The joy of time and making memories with our sweet lovable little Brecken.

Because memories, they last forever.

** I continue to thank each and everyone of you for continuing on this journey. For checking in on my blog, for checking in on Brecken. For all those who have complimented me on my writing, thank you. I do this for myself, and it helps to share this with you, to be real, raw, and open. Because like I said, you are my village. And I need our village. :)

Tuesday, June 26, 2018

Staying Strong at Your Weakest

I would have to say this hospital stay, going on day 6, has been by far the hardest. Its been emotionally, physically exhausting. And when you don't think you have enough strength to keep going, you find just a little more and well, somehow keep going. You stay strong for your baby, who is fighting one of the biggest fights of all. You stay strong for your three year old, who when the tears don't go away, keeps giving you kisses to make you happy and feel better. You stay strong for your husband, who is just as weak as you are, but you put your arm around each other and help each other just stay afloat. And you stay strong for your family and friends so you can sit down and let them know whats going on, just trying to get through conversations when inside you are falling apart.

As mentioned in my last post we brought Brecken into the hospital Friday because of respiratory or breathing difficulty. And after much further testing and information we found a little bit more. Brecken has been very very sleepy. He slept for almost four days. Not medically induced but just by himself. We lost the smiles and the eye contact, we lost the interaction. We did our best to keep him comfortable, and kept him on bi pap,to add a little bit more pressure and help breathing. We have given him a few medications that hopefully might help in the short term. 

But what we have found out is that, unfortunately, his Alpers Syndrome is progressing. His liver is not able to function as it should and his brain is not functioning as it should. And there is nothing more medically that we can do. We as a family have had some really hard decisions and really hard discussions with his doctors and team about what we want for Brecken going forward. What is helping Brecken stay comfortable and pain free, and what is not. What is making Brecken happy, and what is making us happy for Brecken.

We wish he knew exactly how much more time we have with this sweet boy, but we don't. We wish we could give him medications or treatments to fix and make things better. Heck we just want a cure. But we don't. And its been in that moment these past few days, we feel helpless. I honestly did not think that I would ever see that sweet smile again. I felt feelings I didn't think I had. And its the worst thing in the world. Simply the worst. Nothing can make it better, no such thing as band-aids.

But then this morning at 7am, Brecken woke up crying. I took him and snuggled him, and he woke up. He opened his eyes and we talked. We counted to five, and I heard that sweet little laugh. I saw that sweet little smile. And I realized, not matter how much time we have left with him, he changed this world and he changed my life. He shows us the power of a smile. He shows us strength. He shows us that no matter the fight, no matter the journey, no matter what, we love and we smile. And I find peace in that. Brecken is doing above and beyond what he has been sent here to do, and he continues to amaze us each and every minute of each and every day.

Our number one goal at his time is...  HOME. We have a lot of loose ends to tie up and a few more decisions and things to consider, but Brecken is coming HOME with us. Just where he needs to be. The future for Brecken is very unknown, but Alpers is taking him away from us. We will do our best to keep him comfortable and happy. We will make sure we give extra snuggles, extra kisses, extra everything. We will take each and every single #BreckenSmile we can get. Come days, weeks, or months we will stay strong for Brecken.

And thank you. Thank you to every one of you for continuing on this journey of mine. This journey is not done, nor will it ever be. But it takes a village. And no matter the hardship, no matter the pain, no matter how strong you can be, I am not alone. I know I have you. And right now I need my village.


Saturday, June 23, 2018

Home is where you make it.

One of our main goals for Brecken is to be home. To be home with mommy and daddy and big brother Easton. We want him comfortable and happy. When something comes up we have a laundry list of phone numbers and contacts in which we can call to get advice from. Most often its something we can figure out on the phone. He also has about 3-4 nurses during the week to lay eyes on him and to help us better figure out treatment plans and keep Brecken safe and happy. But ultimately we all just want to be home with him.

For the last week Brecken has been having to work a little harder at breathing, mostly when awake and has been pretty comfortable at night. He has stridor which is caused most likely from his low muscle tone in his neck. But again this has been kinda normal for him. We have seen some retractions or muscle pulling in his abdomen and chest, and at times to a point you could use it for a bowl of cereal with milk. But not acting like he is in distress or showing a higher heart rate. As well as having a difficult time with coughing. But we have machines for that. He has been very sleepy as well as retaining some fluid especially in that sweet face of his. But his oxygen levels remained high. We were torn. And quite frankly a little perplexed.

On paper it seems obvious to just, "bring him in". But with a medically complicated child like Brecken the decision isn't always straight forward. And we have so many tools that we have been given to help us stay out of the hospital. We have been using his respiratory treatments, nebulizations, vest therapy, and countless hours to help him along. He was even taken care of by a few of his nurses that seemed as perplexed as we were. But yesterday we decided that it just wasn't enough. Brecken was just not Brecken anymore. He needed a little bit more help.

The decision to bring Brecken in gets harder and harder. Of course there is always the safety of my child in the foreground. He needs help, there is no question, bring him in. There is also the countless hours I think, what else can I do to keep him home. Because home is where I want this little boy to be. He doesn't belong in the hospital. And there is always the dilemma of what am I doing at home that they are going to do different in the hospital. What are they going to say when we show up for the 8th time in the last two months with this little boy in our arms.

But the mommy gut said take him in. It was yelling at me. So we did. And here we are. Back in the PICU at Children's. Brecken started having more of a difficult time and it was not getting better. He was admitted to the regular floor, until the pulmonologist saw him and he was very quickly brought down to the PICU for a little bit more closer observation. They have put him on BiPap, or a machine to help give him some pressure to help him be more comfortable breathing. (Its even a giraffe) It has helped for the moment, and he is resting comfortably. We hope this solves some of his difficulty and we will see in the coming days as he rests up a little more. 

We continue to thank each and every one of you as you keep praying, sending good vibes, love, support, hugs, food, cards, and donations. It helps these hospital stays a little bit more manageable. It helps with stressful busy days and long nights working with his team to help him feel better. It helps us try to normalize life with a busy and active three year old, who doesn't understand what is going on, and just wants to be with his mommy and daddy, but needs to stay with grams and pops.
And although hospitalization is inevitable at times, it allows us to enjoy our days at home more. As a family, together staying strong for Brecken. We hope that Brecken can heal quickly and we can get home fast! But for now, home is in the PICU.

#mommingstrong  #breckenstrong  #breckensmile  #weallstaystrongforbrecken  #wannagohome

Saturday, June 9, 2018

We Stay Strong for Brecken

Its crazy to think about how many emotions one can feel in a lifetime, let alone in the matter of minutes. But the emotions I feel stepping back into Room 7 in the PICU. Well it was overwhelming. I almost turned around and asked for a different room. 

Brecken was admitted to children's hospital for the second time in a month. He is having a lot of trouble managing his secretions as well as working a little harder at breathing. With the need for close observation and a little bit more supplemental oxygen, the team decided the PICU was the best place for him. 

I hate seeing my baby struggle. But holy crap this little boy is one hell of a fighter! As you watch him lay in bed taking short shallow breaths, sounding like he is drowning on thick nasty secretions, he is there smiling and laughing with the nurses. He is strong! 

As I type this, I sit in the same place they placed a breathing tube in my baby, the same place they told me that he had POLG, the same place in which I spent weeks and weeks at the bedside of my sweet Brecken, the same place where this all began December 28th. My stomach wont stop churning. It brings back the memories of things I don't want to remember. Things that will be part of our story for the rest of our lives. Things that suck. 

But this room also reminds me of strength. It reminds me of patience. It reminds me of the day I got to hold my baby for the first time in weeks. It reminds me to sit down, take a deep breath, pray. 

This room is exactly the place that we all need to be in right now. Its the place where the nurses and doctors are round the clock working on making Brecken feel better. They all know this boy. Not only because of his extended health history, but because of his smile. That smile that lights up a room. And today and tomorrow while he is here this room is going to be bright. 

Brecken is strong. But we all stay strong for Brecken.

Thursday, May 24, 2018

When plans change.

Life can really throw you curveballs.

I have learned one thing in the last few months: just dont make plans. That morning I had a to do list. I was going to have a get crap done day as I like to call them. I was going to tackle the flowers, yard work, errands, laundry, groceries, and well whatever else I could fit in that 8-4 shift while Brecken was in the trusty care of the nurse at our home and with Easton in tow. Nothing goes as planned though. I feel like the world has a weird way of saying there is too much going on, slow down.

And before I knew it we were heading back to Childrens Emergency Department to get Brecken checked out for worsening pnuemonia and some nasty respiratory bug. It didnt take long to hear the words... We want to admit you to the hospital and watch him closely overnight.

So there I was digging out those well worn in "hospital slippers". Packing our bags for what I hoped was just a one or two day stint in the hospital. Going back to eating take out or cafeteria food. Trying not to think about the rock hard bed that I will get to sleep on. Trying to rationalize with Easton (my three year old) why he couldn't come with and stay with mommy and daddy. And going back to what I feel is like our second home. A place where you see familiar faces, and like Friends... 'where everybody knows your name'.

And there I sat with my sleeping baby in arms. Thinking about all the to do's and when am I going to get all those things done now. Sitting here rattling off every symptom, vital, medication, dosage, time, and therapy he has gotten in the past week or so to every doctor that enters the room. Realizing that for the last few months my brain has been in overdrive. Trying to remember this and that. Trying to keep it all straight. Trying hard to think about if I had time to brush my teeth in the last week.Trying to simply survive day to day, emotionally and physically.

I did not get one thing knocked out on my to do list. And not a single thing went as planned that day. There was a reason for that. I got to spend a couple days doing nothing. Nothing but snuggling this sweet precious boy, who knows me as his momma. It far surpasses a to do list, or a get stuff done day. It is the best thing in the world. And it gave me a moment to just pause and be thankful that I am able to be there for him, every single minute of every single day. A moment to allow me to pause, take a deep breath, and realize to do lists are not that important. What is important is right in front of me. And right now that is this little boy.

This sweet little boy who is fighting one hell of a fight. Who is followed by one strong mommy, daddy, and big brother. Who love him more than "the universe and beebob" as Easton says.


Friday, April 27, 2018

Asking for Help

Asking for help is hard.
I will be the first to admit I don't do it enough and don't do it often. I am definitely one of those do it yourself, superwomen wannabe, just get er done kind of gals.
But why is it so gosh dang hard to just ask for help?!

This new journey that our family has embarked on has been difficult. It is hard to care for a special needs child. Its hard to administer so many medications into such a sweet little baby. Its hard to just leave the house when you have to remember you have monitors that follow you. And its hard emotionally. Its hard to think about the future and whats to be. Its hard to worry 24/7 about that cough, sneeze, twitch, and movement.

It has been an exhausting task trying to follow a very active three year old around the house with a 24 pound baby and and IV pole in tow. So... I asked for help. I asked for help not just for Brecken and our family, but quite frankly for myself. For me.

This week was the first week that Brecken has had his own private nurses come to the house to help take care of him. It was the first week where I was able to do the dishes, have folded clean laundry done, and I actually showered! I was able to do all of this while Brecken was in the good care of a nurse who is trained to take care of a special needs child.

And although it's help, its obviously something that will take time to get used to. Getting used to sharing your home with someone all day. And for sure being able to trust these people with your baby so that you are able to leave the house for periods of time. (Maybe to just run across the street to get milk for starters).

But I asked for help for me. To allow me time for proper self care. Time to focus on myself. Time to allow me to do things during the day that will allow for family time in the evening. Allow me to focus more attention and time with Easton. Because I have learned one thing. I need to take care of myself in order to take care of my babies and my family. To allow me to feel just a little bit less stressed so I can enjoy these days with my family that much more. To allow me to be present.

I asked for help for me but really for my family.
It was difficult but I think it is going to be worth it.

Tuesday, April 17, 2018

You Need A Small Person

My almost three year old, Easton, has a favorite phrase these days. He always says ...
"Mommy you always need a small person to help you."

You need a small person to help you with the dishes, to shovel, to cook and clean. You need a small person to tell you how to drive and do 'scissoring on paper'. You need a small person to play 'super hero gotcha and trap' (his new made up games). You need a small person to get medications ready, make formula, and push the buttons on the machines. And you for sure need a small person to follow you around and tell you if you are doing everything correct or not.

Its easy to make excuses and say no. Its easy to tell him to just go and do something else. Its easy to just do easy.  But he just might be right. I do need a small person to help me.  I need these two small people to help me just like these small people need me.

After finding out Easton is free of the genetic mutation that both my husband, Daryl, and I carry, and that Brecken was found positive to have. I need this small person more than ever.

I need him to help me wash the dishes, I need him to help fold laundry. I need him to make formula for his little brothers feeding tube, push the button for the nebulizer, to help put a sticker on Brecken's toe to monitor his oxygen. I need him next to me as I draw up 10 different medications to administer to my thirteen month old sweet baby boy three times a day. Because I need a small person to help me feel like there is someone helping me along saying "you got this."

Your doing ok. You will be ok. Its going to be ok mommy. I will help you.
Because we all know one thing.... what three year old is ever wrong. :)

Monday, April 9, 2018

My Story of Momming Strong

And here it goes. A place to share MY story.  My crazy, wild, emotional story of becoming a Mommy. And all the "Momming" that comes with it.
I would have to say that being a Mom has always been my number one goal in my life. I had dreams as a little girl of having a huge family. Lots and Lots and Lots of babies. 

First I became a registered nurse. Then I became a wife. Then finally a MOM.
On April 22, 2015 we welcomed our first sweet, handsome, wonderful little baby boy into this world. Then 22 months later on March 4, 2017 we added a second sweet, handsome, wonderful little baby boy to our family. And life was great. I was a mom of boys! I was ready for the dirt and the sports and wrestling. I was ready for the trucks and cars. I was ready to get a really nice pair of running shoes to chase these little boys around for years to come. I was ready to add more beautiful babies to our family.

But what I wasn't ready for was what happened December 28th, 2017. The night that being a Mom put on a whole new meaning. The night when parts of mommyhood were stripped of me. That night and days to come when you find strength and courage you never knew existed. 

Welcome to my journey. The ups and downs, the emotions, the laughs, the tears, the happiness, frustrations and fears, sadness and anger, courage and strength, and of course the joys and smiles. 

My story of 'Momming Strong'.