A moment in time.....

Writing has always brought me comfort. A way that I could share and document every bit of our child's journey, for us, for our children at some point in time where they may want to look back and read their whole story. Unique to them, memorable for us.

I never once thought that maybe my child's story wouldn't be able to be read by her. That the story would end before she was able to read and understand it. And that stinks.

But as I've come to realize, actually we've come to realize, her story began long before our time. God and Danielle had this life planned for her. And we really think that she was ok with it. I don't think today is a day that I'm able to elaborate much on that because today grief has struck me. HARD.

So for a moment I just need to share with the universe how much I miss our girl. God I miss her so much. One would think that when you have the 'blessing' of being able to sort of 'prepare' yourself, knowing that soon life will come to an end, that things would be easier. Nope. Doesn't exist. Easy doesn't exist in the world of losing a child even if you had a zillion years to prepare. I thought when we were going thru this with my Mom that being able to 'prepare' would make it easier for her too. Nope. Easy doesn't exist in the world of losing a parent, even if you had a zillion and one years to prepare.

So we are left with memories. And thank you lord Jesus we have a TON of them. But I selfishly want more. I want more memories. More walks on the beach. More road trips. More dance party's in the living room. More frosting cookies memories. More mornings of walking into her room singing, 'Good morning little peanut, good morning little girl.' and hearing her squeal with delight. More times of her saying 'yeaaaaaa' when I would ask her if she would 'babysit' her little sister for us. More times of going on adventures with her. More times of going to farmers markets and spending days at the pool. More times of my Dad coming to visit and him greeting her saying, 'where is Grandpa's cheerleader at.' More more more. Is that selfish of me? Maybe, because I know, we know, that God called her home when it was her time. But in life we always want more.

We are learning to live more simply. To live our days making memories instead of relishing in things. Things don't matter. Memories do. If I could never purchase another thing in my life, but I could forever make thousands of memories with my kids I'd be ok with that. Danielle will forever be a part of every memory that we will continue to make. It is just sad that she will be with us in a different way. The brightest start in the sky at night. The sunshine that soaks into our body's and shines on our face. The butterfly that appears when we need a reminder of her. Even the caterpillar that appeared in our garage last weekend on a 50 degree day, I believe was heaven sent.

My biggest fear is that our girl will be forgotten. We will never forget her and we don't want you to either. Please forever remember her smile, her infectious smile that even thru 13 brain surgeries, over 130 days in the nicu plus a hundred more days spent in the hospital over the last 6 years, she ALWAYS had a smile. She had a zest for life. And we were BEYOND blessed to be able to be a part of that. TO be her mommy, I tell you was my greatest joy. And I know her Daddy would tell you the same thing too.

So for a moment in time I wish I could just pause, or that I could go back. That I could kiss her one more time, that I could hold her hand and look into her eyes and say Danielle I love you, do you love your Mommy....and have her look back at me with the biggest grin you ever did see. That I could say to her one more time, are you my pretty big girl beautiful butterfly princess...and hear her say 'yeaaaaa' and giggle and smile in true Danielle fashion. For a moment I wish I could watch her and Dylan read one more book together, I wish I could put Brinkley in Danielle's crib one more time for a morning greeting. I miss our home being filled with nurses we loved. I wish for one more time at
7 am that I would hear that garage door close and I could be greeted by a friendly face one more morning. Even Dylan said last week, 'Mom, does it seem weird that we don't get to see nurses any more in the mornings?' I know he misses it too. For a moment in time....

I challenge you today my friend to embrace every moment of your day. Whether those moments are struggles that nobody knows about, or whether those moments are joyous and happy. Embrace this moment god gave you. Do it for you. Be thankful in those moments, remember they are a part of your journey.
And one more thing. Please forever remember this little beauty and pray for her and our family. One more day I will write more of our journey that I don't ever want to forget. Parts of our journey that we kept to ourselves, we will eventually share just so we don't forget the strength we had to have in those moments. But today all I can think about is how much I miss our girl and if I could just have one more moment in time...if I could have one more moment with all of our children together in real life, not just two together in real life and two in pictures. For just one more moment in time I could do our big group hugs and I could kiss all of my babies one right after another as we are all embracing each other. One more moment in time so I could say to her and have her look at me when I tell her I love her and I would forever fight for her. One more moment in time that we could just have our family together....

A Rainy Monday.....

Wrote May 14, 2018
Its Monday, a new week, another worry :-(
Yesterday was Mothers Day. a rainy day in both our emotional world and our physical world. Our morning with Danielle started ok. She made me the most beautiful picture card, complete with handprints as flowers. My heart melted. I secretly had been wanting something with her handprint on it, and had often thought about taking her to the kitchen table to draw hers out. Then her nurse did it for me.

It is like God is popping up everywhere and saying, 'I got you covered! And has crazy as that sounds, I don't really need for anyone to understand other than Brad and I. I am sure it sounds crazy if you aren't as strong in your faith. But it provides me more comfort than I can even explain. Since the day was rainy we didn't have any outdoor plans except Dylan had a football game scheduled. The late morning offered some relief so Dylan went outside to play with his friends, Brinkley took a nap, Danielle was laying on the floor quietly watching a movie and Brad and I came into our bedroom, vented to each other and cried.
We have so many fears. So many concerns. So many feelings of how can we live with out this part of our family when God calls her home. It seemed too much to handle. In having been thru a similar situation with my Mom just a short under 4 years ago, I think I'm familiar, I think I am prepared and feel like its my job to share that with my husband. But this could be so different, or so similar. I just don't know how to prep him, that sounds TERRIBLE. Prep him for the death of your child, what in the world! But I guess for me maybe it makes it not as scary, but it was scary, uh my emotions are all over the place.
Brad and I went thru a zillion feelings in our minds, a zillion different circumstances, but we both decided that ultimately all of our feelings stem back to wanting to protect our family. Protect Dylan from seeing something that he should never ever see, protect Brinkley like what if she needs a bottle in the middle of a scary situation with Danielle, does she just lay there and scream, how do we handle that? And then most of all Danielle, we want her comfortable, we want her to know we are there and not ever leaving her side thru this, we want her to know unconditional love and support and to feel her mommy and daddy when she needs us the most. She's continued to be tearful at times, I've taken some pictures but the smiles in the pics are because I made a silly noise to get her to smile. She's good at fooling people and putting that smile on her face when she is hurting. I admire her so much.
We've continued to give meds to keep her comfortable. But yesterday we noticed those meds didn't work as well. But last night she slept well without them.

This journey is confusing. Its mostly really sad. Its scary. And my eyes are foggy today. We are home with our girl. Daddy is taking amazing care of her while I'm at work for a few hours. We've yelled a few times, that didn't make us feel good. We have cried a lot. And we have tried to smile when we are all together. We don't want Dylan to know what is going on, and we keep it all from him and everyone else. We hope people understand as they read this, later, why that is. I guess nobody needs to understand. I remember my Mom telling me that. She didn't want anyone to know her condition, she wanted peace, and that is exactly what we want for our girl. But last night before bed Dylan cried, he didn't know why, I don't know why, the conversations we had were when he was outside, but he isn't stupid. The mood in our house yesterday, on Mothers Day was somber. He must have felt that. That breaks my heart. Today we meet with the hospice doctor for direction.

I don't know what a moment from now or even a day from now holds. I know this moment we are ok. I know our girl is putting up one hell of a fight. I know that we will put smiles on our faces for our family and melt down in each others arms at night. And that is ok.
My FB memory from today, 3 years ago was this.......if this isn't God talking to us, I don't know what it is. God I trust you and we really need you.

It’s been so long...

May 12, 2018
it’s been so long since we’ve updated about our girl and now isn’t the time, but these feelings must be wrote down, a release.
Today was hard. One day before mother’s day, a few hours away, i was torn all day. Sickness in the house, everyone exhausted, trying to hold it together. While at the doctor with a sick baby the phone rings, a worried daddy, hurry home, it’s happening...words i knew what they meant. Stuck in traffic on First ave, trying to get to Dunkin to buy a coffee, i quickly veered and weaved thru traffic i needed to get home. A text sent to my dad, we might need help. Panic but then calmness. I drove right by the cemetery, most view that as a place of sadness, afterall souls don’t live there, only physical remains do. But not for me, it’s comfort to be near physically to all those i love and miss especially my baby and my mama.
Before i got home the call came back, she was more stable, my heart had already stopped racing. It was ok. No need for coffee, it didn’t sound good, i just wanted to touch my girl. The rest of the aft was chaos, trying to keep our son comfortable and not worried, keep the Baby comfortable and away and mostly to keep our peanut comfortable and settled. We have those meds we have on hand for situations like this, i made the decision to call the on call hospice help line because we didn’t know what to expect and if we needed them i needed to know they had some background on our day. The tears flowed. Wow, this is our reality. Brad said, this sucks, it’s like we are living a secret life, a secret society. It’s true. We are. Much like the nicu, a world full of unknowns, but this world a child in hospice,we don’t know when the unknown will come.
The rest of the day was rough. She fussed so I’d hold her and get Her comfy then she needed to cough so she’d go on the floor, then she’d fuss and daddy would hold her. She’s sad and that breaks me. She knows what’s going on. As much as we don’t talk about it around her, we have kept the world closed off to this because we need to protect her, it’s her, she knows. This is when my prayer comes in, god i need you. I need you to protect my girl, i need you to hold her and let her know she’s loved, comfort her and give us all the strength to exceed anything she needs, we want the best of the best of the best for her, now and forever to eternal life. The baby is tucked in her bed, Dylan is tucked in his, and now we take turns holding our sweet girl. What will the next hours entail, what will tomorrow bring, i do not know. We are lonely, we are scared, we are sad, yet we feel so blessed she is ours and boy are we ever proud of her. There’s so much going on around us, yet we are here with our wheels spinning, digging into the ground going know where but to somewhere we are unfamiliar. What will this look like for us, it doesn’t matter, this secret society as lonely as it is today, we have each other and in this moment we get to hold our girl and all of our babies, except dalton, and holding her, playing with her hair, that is what matters. Lord will you please hold us too too...?