It's a happy day. A day of love. A day of cuddling and kissing. A day to snuggle with the ones you love and pamper them even more than a normal day.
But that's not quite right. One of my most precious valentine's isn't here. But you guys already know that. You already know I'm broken and missing my beautiful boy.
What you may not know is that this week alone 3 more kiddos have passed. 2 had Mito, 1 had a CHD. 2 I am friends with their moms, 1 I didn't know. One I more than knew. I have held him. I have watched him play and nap. I have traded medical supplies and stories with his momma. He and Eli have shared the same doctors, therapist, and dietitians. My heart is breaking. My heart is breaking for them. I would love to tell you that my heart is only breaking for them, but I would be lying. My heart is breaking for me too.
Monday I will walk into the funeral of a 3 yr old boy that I watched grow. I will hold his grieving momma, just like she held me 9 1/2 months ago. I will cry tears for them, for us, for our boys, and for our medical community.
I crumbled under the weight of the deaths this week. Sometimes I want to run and hide. Lock myself away from the medical world. The pain is immense, sometimes to much to handle. I no longer just grieve for each loss, I grieve for their loss and for mine. Oh do I grieve. But here I remain. Standing as strong as I can. This is my community. This is my family.
I think back to Eli's passing. I think back to the grieving mommas who reached out to me. I remember asking them how? How do I do this? Telling them I can't. I remember the things I said, the tears I cried. I remember placing my burden before them, knowing all to well how much they were struggling with their own grief. I remember them encouraging me to do just that, I remember them saying I'm sorry, I'm here. I remember all of it. I look back now and I KNOW how their hearts were breaking at that moment. I know now how damn STRONG they were right then and their to be taking my burden on with theirs. To be up talking about the details, listening to me cry and scream, receiving the same texts over and over that I couldn't do it. The pain I now know that they were feeling at that moment, and they did it. Never wavering, never telling me enough, never once shying away from helping me.
You know why? We are a select few. We are a community. It's my turn. I don't feel strong. I feel so weak. But you know what, I bet they did too. It's my turn. 9 1/2 months later I will be that momma, that friend, that broken hearted grieving momma who says I'm here and we can get thru this moment by moment together. It's my turn. I will do the same as those before me, I will be strong and I will bear my grief and theirs; knowing that sadly one day it will be their turn as well. This community that we live in guarantees that there will be more children ripped from their families arms too soon. This is not the end. There will be more who join our grieving ranks.
All I can do is vow to be there. I will be there now and anytime in the future. I will be here day or night. I will hold them up when they simply can't do it on their own. I will carry the memory of their battle, of the precious beautiful child. I will honor them. I will grieve with them. I will stand strong, for I know that it's their time to grieve.
What would I ask of you all? Please help carry their memory's too. Please help support us "seasoned" grieving mommas too. We are the front line for the "new" grieving mommas and this brings us a new wave of pain and grief that we have to be careful with as this is THEIR time to grieve, and we will grieve with them because damnit their child was amazing and they will be forever missed. Be our support, so we can support them to the best of our abilities.
Finally always love our babies and always always always know that our beautiful babies are up there watching over our ENTIRE community and are immediately welcoming as their heavenly community expands.
We are the grieving mommas. It's one hard road, that none of us want to be traveling down. We will stand strong and we always have open arms and open hearts for each new broken family that joins our ranks.
Damnit we are Hero's. We have endured more than that body and heart and soul was ever made to endure.
So yes it's Valentine's Day, and my heart is grieving, my heart is broken; not just for me and my beautiful boy; but for all of us. Love to all the grieving broken hearted ones on this day and every day after; for you are MY heros!
Monday, February 10, 2014
Swamped. That sums up life. We are swamped.
Jace has been so sick. He has been sick for 2 weeks, pneumonia and strep. It was rough seeing him sick, and mentally and emotionally draining knowing it was pneumonia. My heart struggled with that a lot. His fever is finally down, still a lot of coughing and a bit of wheezy breathing. They have him on an inhaler now as well. Trying school today, we will see how it goes.
Emily's elbow is healed she's back at her violin. She had seating auditions yesterday and is working hard for their upcoming concert.
Benjamin. My little Benjamin. He's struggling. His doctor changed some medication dosing to see if that helps any. He is also referring Benjamin to a psychiatrist to get set up with her. Also he's sending him to a neurologist (Eli's old neuro before we moved to KC) to make sure that Benjamin isn't having seizures or anything neurologically that we may be missing. Lastly, and most painfully, he is sending Benjamin to a geneticist (yes you guessed it, Eli's old geneticist before we moved to KC). He suspects that there is an additional diagnosis, and he suspects that it's what has been talked around for years. My mind knows that EVERY single person is affected differently. My mind knows that it's NOT the same as Eli. My mind knows it's different. That doesn't change the fact that my heart and soul are screaming in agony that I simply CAN'T go down this road. We have agreed to the referrals and will move forward down a road we have already travelled knowing that refusing to move, won't change it; but it doesn't change me from wanting to dig in my heels and not move.
Ariana is busy as always with school. She has stayed happy, healthy, and injury free. Only change with her is she is now the proud owner of a toothless smile as the top middle came out! She's excited for her 7th birthday on Thursday and is still picking what she wants for her birthday dessert!
Bob and I have a medical family that we met yrs ago, that we are helping out. We met them when Eli quit breathing at RMH in KC in January 2011. They brought us up bags full of food to the PICU and we all immediately hit it off. They had 5 kids, their youngest being their medically complex. They have recently been hit hard by life. The husband/father is very sick himself, and they have lost their home. We have borrowed 2 of their children as of yesterday, and 1 more as of wednesday to allow them to only need 1 hotel room. That takes our kid count in our home to 7; ages 14, 13, 12, 10, 10, 8, 7. We are thankful that we are able to help, and are hoping that this gives them the breathing room they need to be able to find a new home.
Me. Where am I? I'm training for my 1/2. I'm putting in quite a bit of miles and adding in strength training workouts as well. I'm going to do this. There is no doubt in my mind.
I've had a few emotionally rough days lately. Thoughts of Eli and that night have flooded my mind. When Bob & I were in town we were able to go and spend a bit of time with Eli. It was very nice!
So all in all were are we? We are busy. We are overwhelmed. We are still taking it day by day. We are pushing thru for ourselves, for our friends, our family, and for our beautiful little boy. We are holding strong onto the hope that life MUST settle at some point, I just hope it's soon!