Turning "17"

My sweet Moo. "You had the power all along my dear!"

Here I am, finding myself in that mood again... I can't really pin point it.  I'm not a cryer unless something really upsets me. I mean sure, I cry at movies or when something makes me sad. But I don't "CRY."  Going to that place where the tears fall like rain and I'm drowning in my own thoughts and sadness. I rarely go there. People ask me how? They look at me and say, "I just don't know how you do it." (Staying strong that is.) But you see strength comes in many forms and weakness just the same.

I find myself strongest when I'm alone.  I have learned to lean on few people thru this process, so that I might save myself from a fall I can't get back up from.  Don't get me wrong I have an amazing support team. I could not have made it thru these years without the people I call to for help, with the things I can not do for myself.  I have made friends in my darkest hour, and they are my saving grace when I fall there again. When Moo is sick, I know exactly who I can call and who I choose to share that specific journey with. They never turn me down, and though busy themselves, they reach out and care for Moo and love her unexpectedly and selflessly. 

This time, my weakness came quickly.  It came on before this hospital stay happened and I'll tell you why.  I think I have Post-traumatic stress disorder (PTSD).  If you aren't familiar with PTSD, it is a real thing. Please research it.  There are people in your life that may need help.  https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967

Here is why I think I have it.  Moo has had several very long hospital stays. When she was born, I started motherhood with a one month stay in the NICU.  She was very sick, and she almost didn't make it.  I lived in that NICU with my head on her incubator, until shift change when I was forced to leave.  At 3:00am the nurses made me leave and I could come back at 7:00am. I lived in the hospital for the first 2 weeks. And then we stayed at the Ronald McDonald house for the next 2 weeks right down the street from the hospital.  I was pumping because she was to sick to nurse and I was recovering from a C-section. Leaving that hospital without my child was one of the hardest things I've ever had to deal with. (And then there was miscarriage #1, a bleed scare with bug, miscarriage #2, a bleed scare with mini me, and all the in betweens of life with a special needs child.

Fast forward to now.  We had a pretty good run of no hospital stays from age 2 until the age of 10.  Now don't get me wrong we have spent some weeks that every other day we were at the pediatricians office.  And some out patient stays for minor surgeries. Many speciality visits and many ground zero illnesses that we spent weeks trying to get to the bottom of.  Never the less, I considered myself lucky.  I have 3 beautiful children. And nothing could change my love for them.

Six years ago, all of that changed.  Moo got sick and she couldn't shake it.  She was really sick. High fevers, upwards to 105. Bug was 7 1/2 years old and in school and mini me and I were home she was only 2 1/2 at the time. After a week of not being able to get Moo better and avoiding the hospital. There wasn't anymore time to be had.  She had 105 and had a grand mal seizure that lasted several minutes followed with being postictal. Mini me and I rushed her to the Drs. office and at 2 1/2 years old the little one had to try to shake her sister awake screaming and scared as I drove. I had a crying toddler and a 10 year old as small as a 5 year old, who sat up retching like a scene from a horror film. We were admitted into the hospital and she stayed 12 days. She didn't sit up for 9 of those days.  She had an illness called Enterovirus. Here is a brief description. And she had every symptom and then some.
https://www.everydayhealth.com/enterovirus/guide/symptoms/ 

I've never really gotten over that stay. The horror of her not being able to breathe. Her little neck was swollen. She couldn't swallow. She had blisters in her mouth. She couldn't sit up. And it didn't help that at the time she was to little for a big girl bed. She slept in a crib that looked like a cage. While it was the least of my worries. It seemed inhumane. The day we were supposed to be discharged she had a grand mal seizure. Things got crazy after that. I was never the same. My kids were getting bigger, Moo started having seizures again all the time. Life was messy.  We managed to stay out of the hospital for 2 more years. She then got a severe kidney infection and we stayed another week or so. And then we lasted another 3 years and she had another 7 day stay in the hospital with a kidney infection. Of course it was the week of Bug's 13th birthday and Mini me's 8th. This hospital stay hit pretty hard. Everything was out of my control and It broke me. I have yet to recover from that stay. Every day I pray we won't end up there again. It was to raw and I knew I needed at least a year in between visits to somewhat emotionally recover.  

Poor Moo

This past week out of nowhere Moo spiked 104 and I was almost positive it was a kidney infection.  Thru the night it was almost 106 and my heart was broken. After all we had been here just six short months before. We went to the pediatricians office to have some testing done. They are amazing and took every precaution. We went to the hospital for further testing and some fluids and depending on the outcome was whether or not we would be admitted.  Sure enough we were admitted Friday night and we ended up being there until Tuesday. The days were long and the nights were endless. We didn't sleep and she was weak and I was sad.  I stayed strong for her, but I could feel myself crumbling.  I cried more than I have in the past. Family and friends reached out, but I found myself retreating in my mind. I had nothing to say and nothing could make it better. Except being home.  And now that I'm home, I keep repeating in my mind to all the things that happened. The beeping of the machines, her oxygen dropping, her first nose bleed that was a scene from something you couldn't imagine. A blown IV. The IV team tapping her arm for the vein to please reappear. It's just all to much sometimes. So yes, I suppose I have PTSD and with each illness and hospital stay it gets worse.

While I know I will be fine. I am strong and I am weak. But weakness is where you go to be your best self.  If I fall to the ground, I have no other choice but to get back up. So I allow myself these moments. If you know someone who has been thru something similar. Reach out and see what you can do.  Just be there.  Each person's trauma is different and and they are affected differently. But know that PTSD is real and creeps up when we least expect it. But know this. The strong are weak and the weak are strong. Never underestimate my strength as a mom, because I will fight until my last breath.

Visiting sissy at the hospital

(For more information on seizures)
 https://www.brainline.org/article/seizures-and-epilepsy-frequently-asked-questions

In the middle of the night Maddie spiked a fever of 102. Thoughts racing through my head of how many times is she going to get sick this school year? I was just sick to my stomach.....

New Year's Eve 2018, Moo and Bug

This new year didn't quite start out as a happy one.  I try to always take pics when I can, even if we aren't looking our best.  We lived another day.  And I always try to remember things could be worse.  We are here, and we have each other. My mind gets cloudy, my eyes are teary and....

My mommy heart hurts! There is no other way to say it.  The sadness inside is overwhelming over this beautiful child that has so much life inside her. Life that is trapped and can't come out. Why does life have to be so hard?  These are the questions we ask ourselves as the days are long and the nights are even longer.

All around me, there is so much happiness and joy.  But why can't I get past this sadness? It's almost as if I have a split personality.  You see I'm able to laugh, and I'm able to have fun, but there is a part of me that is always missing.  Maybe that part of me is that part of Moo that is trapped.

It's been weeks since I've written anything down.  And those thoughts above have been on repeat in my mind. Today is a new day. I'm trying so hard, but this daunting feeling I can't get over.  Moo hasn't been in school for over 5 weeks.  She was fine and then she wasn't. She got the dreaded flu.  All over the news are reports that people are dying from the flu.  "Why did I need to hear this?" I was living my own nightmare.  Of course I panicked when her temperature hit 105.... 

We fought back hard like we always do.  "Wait, who am I kidding?" Maddie fought back hard. I just made sure she had what she needed.  When she stopped drinking I syringed liquids into her mouth.  When she was fevered and her body was trapped in seizures, I took cold cloths and cooled her body down.  When she was in pain and had fear, I held her. And then the fever broke.  I thanked God.

"Our only outing in weeks! Showered with a pretty braid to go see the Dr.

The next few days brought about lethargy and a deep, wet cough that would scare most people.  All I could think was, "please God, don't let my baby get pneumonia!" I took her to see her pediatrician. 

Her lungs were clear, but they treated her proactively with antibiotics to prevent any other infection.  About 5 days into taking the antibiotic, my sweet girl had a reaction and her face broke out.  It looked like she had heat rash all over her face.  She just couldn't catch a break.  After days of that, I thought she was getting better. Then Maddie got a stomach bug and had diarrhea for days. It just wasn't ending for my sweet girl.  


Finally, Moo turned the corner. Just in time for her sister's dance competition. But I was going to have to leave her. We knew she couldn't make the trip, so we made sure that she had her own spirit shirt and represented from home! God love her. She stayed with her Gaga and Papa. We are so grateful for them. They love her like she is their  own.


 "This is how we spend most of our time when we have events. Split up.  It makes things hard, but we are so fortunate to be loved and have family who loves us.  So thats a win for all of us!!!"





Getting back home to my girl was the icing on the cake.  I could stare at this sweet face all day long!!! We talked thru silence, but I knew she was ok. And then the thing that always happens when I come back from being gone. My sweet girl's body and mind play tricks on her. It's almost like an emotional break down. She gets the chills and doesn't sleep good and this last for days.

"My sweet Moo, I will love you forever and always!"

Here we are and it's Monday.  Finally up and moving. Tomorrow we are hoping that Moo will go back to school. I think she is finally ready. I will cherish every moment with her. Every breath is a gift.  My mind will try not to wander with all the what if's, because I know there is no guarantee.  But these moments of Maddie's journey are important to process. There are so many families who are going thru loss of a loved one. And struggling to get thru the day.  We are here with you.  We know what that is like. But together we stay strong.  And we are here to support anyone, who needs to know how much they are loved and needed.

Thank you God for another day with this girl.  We are so blessed.  Her strength to carry on, makes me want to be a better person and give all I have back and then some!

I am forever changed because of her. And forever grateful for these lessons she teaches me. God knew what he was doing.  Thru silence, I am changed.....

As moms, we all can relate.  Sometimes it's all to much.

How can I even begin to collect my thoughts.  It's a new year, but everything feels the same.  Like I'm drowning in a sea of chaos.  I keep going over everything in my head and the same feeling surfaces over and over. "The water is above my head!" 

This is how it begins, the onset of anxiety.  It's not easy to be everything to everyone.  A good wife, mother, daughter, sister, friend.  So I decide to step back and control the things I can control.  It's not easy to do. This year, isn't about new resolutions. It's about old ones. Making sure that my life is my own and not what someone else thinks it should be.

I can tell you that all of these thoughts consume me.  And somewhere between child one and three, life became a hot mess.  Ok, so maybe it was a hot mess before that, lol.  I go to bed every night praying that the next day will be a little easier.  And the next day, I realize that maybe praying for easy was not what I should be praying for. So I pray for patience instead. 😅 Lord knows I need it.  These kids are going to be the death of me.  No sleep, sick kids, animals and more animals, dishes and the laundry, "OH THE LAUNDRY!"  "Which clothes are clean and which ones are dirty?" "How do I not know this?" "I did this laundry, I should know!" But wait, it was the kids. They didn't really put the laundry away like I asked. They got confused and mixed it all together! 😜

Forget it, let me just sit down with a cup of coffee and read. Sits down. "Ugh, where are my glasses." Old age has hit me and I can't see anything. (But I can change a diaper in the dark and not wake my kid up!) Hooray for goals! LOL Gets up, finds glasses. sits down. "Ugh, coffee is in the microwave from heating it up again after the umpteenth time of trying to drink it."  Dog needs to go out, phone rings. And now I'm getting a call from the school to pick up a sick child. The day is not going as planned.

The days never go as planned. They are fast and furious. But at the end of the day, I wouldn't trade a thing.  My life is chaotic, busy, unplanned, disorganized a cluster 🙈 and I'm ok with that.  Because plans are overrated and life would be boring if everything was exactly how you thought it should be. "At least I think it would be boring." But I wouldn't know boredom if it smacked me in the face!" Hug those babies. Talk with your spouse. Laugh with a friend. Call a loved one.  Be grateful for what you have. Have faith and the rest will follow. Then open the wine and make the coffee, if you don't like those drinks, find something you do. 💓 Just do it with a smile.

"Tis the Season"

• Deck the hall with boughs of holly, fa la la la la, la la la la. ’Tis the season to be jolly, fa la la la la la, la la la la

Words hurt even if you don't think somebody is listening. Someone always is.  Be the person you would want someone else to be.

You see these 3 children here. Sisters and nothing but love for one another.  Innocent and minding their own. Just waiting for mom and dad to come back from the line, while they waited patiently in the shade. My 12 year old stands there texting me to tell me how hurt she is and people are so rude! She was heart broken. And I'm inline admiring how much I love my children.

You see, what goes on in the world so many people are oblivious to.  In this moment my Bug had to listen to two male employees who had uniforms on and leaving Walt Disney's Animal Kingdom laughing and cutting up.  The one says to the other after glancing over towards them.  "Maybe I should just cut my leg off, ride around in a wheelchair and make funny noises."

"You can pick your mouth up off of the floor right now." You see what you don't realize is there is always someone, an innocent bystander that will hear you or see your actions. They can be hurtful. At that moment there was nothing I could do, to stand up for what was right.  I wasn't close enough.  I struggle with this.  Knowing that every day my children are scrutinized for just having a sibling with special needs.

The truth is, that our world is full of judgement.  Everyday someone is scrutinized for their race, religion, color of their hair, the way they talk, walk or dress.  Just stop!!!  You haven't walked a day in that persons shoes.  If you are an adult you should know better. Maybe you don't know any better, But you certainly can learn to be humble and kind. It's never to late. We are suffering as human beings enough because no one wants to care enough to stand up for all of humanity!

And for God sake people, if you are a parent. Please teach your children to be kind with their words.  Bullying is no joke! Regardless of circumstance. A child should we kind with their words. Teach them to be a good friend.  Teach them not to stare.  (Bug had to endure that, while waiting with her sister) while we got them lunch.  It's all to much people.  It doesn't matter if you are different.  Embrace who you are, because it is not my place to judge you! Nor is it the person standing next to you.

We can not change people. But we can always strive to be a better version of ourselves. I am not a perfect daughter, wife, mother, friend. But I choose to be careful with my words and my actions, so that I might make a difference in this crazy world. I pray tomorrow I will be better than I was today.

Take a listen and remember "What a Wonderful World"

https://www.youtube.com/watch?v=A3yCcXgbKrE