365 days since we’ve said goodbye...

I am not quite sure where time has gone. Where the last 365 days have gone since we’ve held, loved on physically and lived with our sweet girl at home. She’s now in Gods home. This thing called life, this circle they say, how does one keep one foot in front of another when a part of you is called to Gods home before we are? How do you find joy in days when such a big part of your heart is broken? It’s something we wrestle with daily. DAILY. We try to be gentle with our hearts but some days the pain is physical and the heart hurts so bad, and the tears feel like fire down our cheeks. And throw the holidays in the mix, we still go about our days longing for you, and praying we feel you near.

We never thought we would ever live life without our sweet big girl. Our life was her, for 10 + years. We GOT to give her life. Show her the world as that’s what parents are supposed to do right. Love on her, watch her learn and grow and thrive and flourish into this big beautiful butterfly princess that we always believed her to be. Danielle Marie, the sweetest smile, the brightest eyes that told such a story even if you only caught her glance for a moment, her voice and giggle. I longed for the day where I would hear her say, ‘ I love you Mommy’, or ‘I love you Daddy’. While we will long for those days to hear those words for the rest of our life, and they won’t happen, what we did get from our sweet girl was love in so many more forms than words can convey. She trusted us to give her the best of the best, and we did. While we firmly believe she knew from day one mommy and daddy would go to all the ends of the earth for her we were careful. No words were shared like that around our girl, because we didn’t want her to ever know that anyone placed limits on her. Zero negative conversations were had around her ever. Not in the nicu and not in her final days on earth. We believe she knew our faithfulness as parents in our actions. In our cares, the way she would put her head under my neck and nestle in and feel my calm heart beat with hers. She trusted us at every appt, at every surgery, at every consult when we told her, you got this big girl, we are so proud of you, keep fighting sweetie.
But then there came a time where her fight started to fade. And you so badly want to see it as you always have, and then you realize God had other plans.

Yet there are also things I really beat myself up over. Like when I was in labor with her, less than 12 hours after having my cervix checked and being told I was fine, yet calling into the doctor and then dismissing my labor pains. I regret when I started having contractions not having Brad drive me right to the university even with contractions less than 5 minutes apart. I know big girl that we did everything, EVERYTHING, yet the more time has gone on and for 10 years I relieved my pregnancy over and over in my mind I wish we would have sought a mfm. The mind can still get the best of us. The darkness creeps in because you are not here. I wish we would have known about the TAC that I got with Brinkley as it could have saved you. And while I know that none of these things happened because they weren’t apart of Gods journey for us, it’s still something that mommy wants to go back and fix, because.....what if.😓 

There is no such thing as living the rest of our days without her here. What happens is we live our days as if she’s still here, we just live them differently. Danielle you aren’t here physically sweetie but you are always with us. You’re with us everywhere we go, in everything we do, we pray to you, we talk to you, we talk about you always. Our family activities start with asking each other, what would Danielle want to do if she were here, and we lead our decisions with that, while Dylan then takes it from there. We greet you when we get home and say our 'see ya laters' when we leave the house each day. You taught us so much about life and love and the true meaning of family and unconditional love. You may not have been able to communicate with words but your voice was so loud. You had so much to say in other ways.

There’s no such thing as getting over the loss of a child. There’s no such thing as living your days without them here. How do you just raise this gift that God gave you and then one day when that gift is gone, continue to live on? You don't. We don't. She’s here, tho not physically here, she’s prayerfully and faithfully here. I begged our sweet girl, please show us signs, please show mommy and daddy you are ok. And boy do we believe she is loving every way she shows us the signs she does. She might not have had the physical power here on earth to move her body but boy does she have eternal power now in heaven! And we believe she loves showing us her new angel skills.❤️ The way she makes the house cameras go off in Brinkleys room the minute we tell her we are leaving and exit the room. The way she has wrestled the Christmas tree ornaments from atop the tree down to the very bottom, the butterfly’s that find us in the wind and the rain, the rain drops on the window of the car in the figure of a little girl, the bald eagles that soar above even on the crummiest of days, the dove that appears where no other animals are near on a very cold December day, and so much more. The way Brinkley looks up randomly and waves and says, 'hi sissy'. The feelings that Dylan has when she is near. The dreams she visits us in. They are all so real.

One year ago today you began your walk with Jesus. We believe you’ve been walking with him long before he gave you this life to live with us, and when we look back at all that we got to do we feel pretty darn lucky that he felt we were worthy enough of raising you at all. Thank you lord for this blessing of our daughter.
But the images still haunt us from one year ago today. While you were at peace once god called you home, there was immense struggle before that, and that’s the horrible part that the devil never wants us to forget. But sweetie we believe you didn’t feel any pain, that you were in Gods hands. It’s just something your daddy and I need to keep praying for god to take that pain away. But it’s grief. It’s saddness. It’s this new journey that we are walking. It’s the loneliness of missing you. It’s wandering when we feel like you are somewhere but we just can’t get to you. It’s missing our home filled with nurses that were a part of our family. It’s missing school routines and meetings to give you the best of everything. It’s not spending hours each month at the children’s hospital, instead finding ways to donate our time there and volunteer elsewhere instead. It’s helping your brother find ways to feel comfortable in his new life of living without you by his side, which is all he’s ever known. It’s keeping your memory alive so your baby sister never ever forgets you and knows all about the biggest princess of our house. It’s keeping your memory alive and begging in our prayers that nobody ever forgets you.
We went to the most beautiful ceremony, as a family, for the donor network sweet girl because you blessed so many. It was the most bittersweet moment hearing from those who were able to get help and live on from donors like you big girl. You are such a gift beyond every single meaning of the word.

 But I tell you sweet girl, we went to the cemetery today and found a couple new angels there, and a new butterfly that wasn’t there the other day. I melted down sweet girl, that means others come visit you there when we are away. That means the world to your daddy and I. It means that others are praying to you too! That was the biggest blessing of this very hard day, seeing that some one else stopped to visit because they were missing you too. Mommy received the most beautiful necklace in the mail last week with all you kids names engraved, and no message who it is from so I know who to thank. Whomever sent this gift, my heart is forever grateful. It is beautiful just beautiful.
Daddy brought you and Grammy roses today sweetie. White just as you both liked. I am sure the valleys of heaven are filled with rose fields as far as the eye can see.

We’ve spent the last 2 days away from home. It was too painful to wake up here and relieve every moment of that horrible day one year ago. Instead, we spent our days together in a beautiful place, letting Dylan choose our activities just as you would have wanted to do. And somehow finding the Christmas Spirit for your siblings when really it doesn’t feel right without you here, yet they remind us we still need to find a way to press on and try to do the best we can.

365 days, and countless hours without you in our arms, how can it be.... Without hearing your squeals and feeling your fingers around my neck. I still touch the cheeks of Dylan often as your skin felt exactly like his. Brinkleys hair is now longer and thick like yours and I’m so thankful she lets me run my fingers thru it as I close my eyes and pretend for a moment it’s you again. I walk into your closet for the smell of your clothes. To touch your blankets and extra cozy pj’s and play with your hair pretties. We know you are with your angel brother Dalton too, that does provide some strange peace to our aching hearts, but the constant wonders of what it would be like with all 4 of our babies with us, together on earth, is something we will forever wish for, and long for and wonder. It will be something we will always wish we had. It will be something that this Mommy and Daddy will be the first thing we look for when we are all reunited in Heaven. Having our family together at last.

Danielle please keep guiding us sweet girl. Guide our hearts. Guide our walk with Jesus and please never stop showing you are right here. And this Mommy promises to never ever stop including you sweet girl. You might be physically away from our site but never ever forgotten. Because this mommy and daddy are forever longing to see, feel, touch, smell and snuggle you again.💕~

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...?

One week ago today...

One week ago today my sweet big girl, you earned your angel wings. At 8:26am the exact same time that God called your Grammy home, he called you too. I miss you sweetie my darling little peanut. Mommy can’t find more words than tears right now. But soon my daughter I will. I just want you back.💔

Our eulogy to you.

June 27, 2008 one of the scariest days of our life yet the most beautiful. Our daughter Danielle marie was born. Her birth was scary, it didn't come without risk, we were told immediately our life with her would be different. We knew and understood and to us it didn't matter the level of care she would need, the sleepless nights we would endure, the level of heart ache we would feel watching her go thru life, all that mattered in that moment was that we got a chance with her. Thru out the course of her NICU stay we began to learn a little bit about the damage to her brain that was done. We had hard meetings and tough conversations, we were asked if we wanted to continue on, to us it was whatever she needed whenever she needed that is what we would do. It was our vow to her to go from all ends of the earth to provide the care Danielle needed no matter the cost, day, time needed or where we needed to go to find it. She was our daughter and God blessed us with her. 

Over the next 10 years our life with Danielle was so grand. From her infant ages she came home on oxygen, had a couple of surgeries, but her lungs were pretty good. We had some illness but nothing that she didn't fight thru and overcome. She began her life with her devoted brother. Early mornings watching Disney junior, laying on the living room floor with toys around galore, she enjoyed looking around and just being around family. Snuggles were her favorite and so what sleep! What a gift! 12 hours a night, seldom a cry, ate bottles for only mommy for the first year of her life but loved bath time with daddy. We began therapies with Danielle to try and loosen up her body. By the time Danielle was 3 we had her in therapy 3 days a week, sometimes more. We began researching equipment and truly trying to find out the best way to maximize Danielle's potential. We had OT, PT, Speech, Feeding Therapy, Music and Vision Therapy, and we hand picked every single member of her medical team, if they didn't fit our mould and our vision, we quietly kept searching for someone new. When Danielle was 4 we met the most amazing therapist that began talking to us about school for Danielle. What that would look like, where she would go. I would take Danielle to meet with Nicole a couple days a week in Springville and in the course of time we began to discover that this little girl with the most beautiful green eyes was just full of information she wanted to share. It was time for her to go to preschool. We open enrolled her to Linn Mar Little Lions and that is truly where her journey into communication began. Brad and I longed for the days where we would her I love you Daddy, or Mommy play with me. We never got that, but what we did get was so much more. The part of a non verbal child that you do get is expression, her eyes told us a story, soon sounds began to come and when she started kindergarten with Mrs. E at Indian Creek she began to respond to us. She began to say 'yea' when we asked a question. It was there with her teacher and support system that our every day connection with Danielle was maximized. She began to make choices and read and learn to write and I know in a minute Chelsie will tell you more. 

When Danielle got to school another part of her needs changed. She needed yet another brain surgery. This time it was positive, it could mean she had the opportunity to walk! How amazing would that be! It also opened the door for in home care. She needed that more than we even knew. We weren't sure what it would be like with our home open to people we didn't know from 7a-5p 5 days a week, but what we soon came to realize were all of these angels among us. Over the course of 5+ years we had somewhere of probably 30 or so people in and out connecting with Danielle. Caring for her every day needs when we were at work, those that went to school with her, therapy with her, came for snuggles on the good days and held her and helped calm her on the hardest of days. Days after surgery when she was in a cast for 6 weeks from the waist down. Days after her 13 brain surgeries when she couldn't have any stimulation, and sometimes the nurses had to literally sit in the dark with the tv almost muted. It takes a very strong person to be able to come in and care for a child that needs so much care. Brad and I also realized how strong we had become to be able to break our own emotional walls down to have people in our shared space also. This was a new normal for Dylan. Every morning at 7am he knew who was coming for the day. 

Over Danielle's life we were able to make many amazing memories with her. Vacations began for her when she was just 13 months old. Her first trip was a marathon road trip with just Dylan and I to Pennsylvania. We also traveled several times to Arizona a couple times of year where my mom was having her cancer treatment. Grammy was such a gift to Danielle and vice versa. They sure had a connection unlike any other. Danielle went to Florida, to Wisconsin, Minnesota, family trips, friend trips, memories made all over the US. We were not going to limit our daughter, we took her every single place we could. The first trip we flew with her meant carrying on an oxygen concentrator, Our amazing world class neurosurgeon actually called a contact out the Phoenix Childrens hospital and gave some of Danielle's information in case we had an emergency while we were there. I am not kidding when I say that God placed the most amazing people in our life. But the most memorable trip for Danielle was by far in June 2016, when her wish was granted and our family was gifted a trip to Hawaii. Little did we know that would be the last trip Danielle was ever able to take. We had so many concerns, of course the 6 hour flight but what if something happened while we were there. Well Jesus took the wheel on that one because it was nothing shy of perfection. Everything Danielle longed for she was able to do. Her and I got a massage. She got to swim with the dolphins and go to a luau and see animals and feel the beach beneath her feet and swim in the ocean. It was a week in paradise with our warrior little girl. 

I could talk to you for days and weeks and probably months about the amazing child Danielle was. But what I really want you to know in all of this is how much she truly impacted our life. She wasn't just our child, our daughter, she was our angel. She taught us more about life than we even knew was possible. She taught us that love has no limits. She taught us that sometimes there is sunshine in the rain. She taught us and showed us to keep pushing, keep trying new things, she taught us that Miralces do come true. They do. Miracles happen to those who believe. And our life with Danielle, 10 amazing years was nothing shy of a miracle. Her siblings love her fiercly. Her brother was her protector, he did anything for his little sister. She was our peanut. At just 20 months apart he only knows his life with her. Brinkley then came along and she was just the sand that fit thru the cracks that we didn't know existed. She pulled us all even closer together. Danielle adored her baby sis, she loved when we would put Brinkley on the floor next to her and she would babysit her for us. Her eyes would light up! Her smile would be from cheek to cheek. Her voice would get high pitched and there were belly giggles in there too. 

All of these things about Danielle we already miss so much. We knew our time with her was limited but we didn't know when. The last months with Danielle were hard. We made every single additional memory we could cram in. She was baptized in our home, she received her first communion in our home. Deacon Ed at All Saints would come and pray over us whenever we needed. And of course all of our nurses, daily visits and weekly visits by others. Christina was a blessing to our family for 5 years. Kasey came into our life with Danielle these last few months, and Andrea would check in 1-3 days a week. Not to mention over the years the countless number of special people who took care of her. 

Our life will be different now. Our life will be much quieter now and we are not ready for that. The last year or so Brad spent roughly 5 hours a day just doing feedings and cares for his little girl. Getting up at 430 am so she was set when nurses arrived. She leaves an immense void in our home. But what we have to remember is that now she is free. She lived an amazing life, one that statistically had limits, but we showed her no limits and she did not limit herself. 

Will you please do our family a favor in memory of Danielle? Please share love in all of your days. Life is too short to be angry or sad. Find the beauty in everything around you. And please always remember her smile, her zest for life and now when you look up into that big night sky, no doubt she will be the brightest shining star you ever did see. We love you sweet Danielle marie. Our little peanut. Thank you for choosing us to be your mommy and daddy. 

This seems like a lot to bare.....but how does she feel?

I haven't wrote in awhile. You don't know what a Miracle is until you need one.

Things have been up and they have been down. Things have been great and they have been scary. Our hearts are broken and they are full of love. They are happy and content and they are sad and scared. Last week was a terrible episode for Danielle. Our nurse called for help, I was on my way home with both kids, I didn't know what to do. Proceed home not knowing what I was walking in to with both kids, or hold off. I prayed to god to protect us. We walked in and she was ok. Then two days later bad again. In the middle of the night I awoke to that terrible sound, I quickly woke Brad and we went to work doing what we do. Then she was ok, Then a few hours later bad again. This lasted all day long. Our two nurses right now are angels, they provide us great comfort. They provide Danielle great care and comfort. But this aching in our heart is so heavy. Hospice is there telling us what we have sensed. The pattern is changing, things are changing. What does this look like? We won't know until its over, they are honest with us about that. So we hold on to her and love her and hug her and cherish every minute with her.

We did Halloween a little early. Costumes and pumpkins. We did the pumpkin patch and it made our hearts ache without her by our side. But she was so happy to put on her cat woman costume and she rocked it! It fit her perfect and she looked so pretty. Brad's brother and wife brought over their new baby and Danielle was able to 'babysit' and hold her and see her for the first time. She loved it! My heart swelled with pride and Brad's did too. It was so precious.

A couple weeks ago the Deacon came back over and did some praying with us. We chatted for awhile about life, and then about some random things too. We decided that night that Danielle would make her first communion. The feeling of Gods love and spirit in that room were like nothing I can truly convey to you. It was so amazing. It was heart felt. It was whole and pure. It felt like nothing in the entire world could break us in that moment. That is what we want to remember every single day.

But then our minds get the best of us.

The heaviness on our shoulders is so heavy. We are praying God to take it off our shoulders so we can just breathe thru these days. Brad got very sad during her cares last night, just wishing we could have her say Mommy or Daddy I am tired. Or Mommy and Daddy, this hurts me. Or Mommy and Daddy, I am ok. And I wish all of those things too.
This morning the heaviness was taking my breath away. Then I was wondering is this how she feels too? Is this a constant for her? I grabbed my phone and pulled up a devotional, instantly hearing Gods word and casting away the devil brought my breath back. It helped my shoulders to settle and relax. Casting away those demons is a real thing. God is so good. In moments where we feel weak. In moments where we feel alone. In moments of grief and sadness he is always with us. Why does it seem like we are so alone in those times when it feels like the world is against us? We are never alone. God has us. Most importantly God has Danielle.

The biggest comfort that Brad and I have in this, is when it is time, Gods time, for Danielle to sit on the lap of Jesus, she will also be in her Grammy's arms too. And I just cannot explain how much that means and the comfort that brings to us. If she cannot be here with us, there is no better person for her to live eternity with. Her loving Grammy.

The lonliest place to be.....

The loneliest place to be is in the middle of the scariest time of your life and feeling like you are living in secret. Well we pretty much are living in secret. All we have is each other. We have SO much more tho in the good days of our children living, physically loving up on them and being able to do so. Time is a thief I tell you because these are the days we want to keep forever, the days we want to remember forever. But let me mention for a moment the days that we want to forget. The days of feeling not included, the days of our family feeling left behind, the days of nobody 'checking-in' on us. And I'm being very brutally honest here because I need to get these feelings out because Brad and I have no other way to do so. So writing them down, maybe one day we will publish and they will help someone else.
We have felt for quite some time now, several years, that we haven't been included because of our family dynamics. And that hurts. Like it hurts so bad my tears right now feel like knives ripping down my cheeks. And I'll fully say my husband mentioned this to me forever ago and I kind of snubbed it off. I am not sure if its because I wasn't fully seeing it, or if its because I didn't want to believe it. But recently, the last couple of years, its apparent. And it truly doesn't matter because we don't want to 'push' our child aside to go do something that she cannot do. That's not fair. And its really not fair to ask someone to not go do that without us because it might hurt our feelings. That's not the answer either. What is the answer? I do not know. We have really tried to become hardened to these situations, to put up a wall so they don't bother us. But they bother us time and time again. We have tried to remember that not everyone who wants children of their own is even blessed with them, and how sad those people must feel. And those that want more than one child but it just can't happen, and how lonely maybe they feel. Or those who don't have any family at all, and not a circle of friends and how secluded those people may feel. We really try to put ourselves in those shoes of others to try and again push our feelings aside. Some days that is easy. Some days it is hard. Very hard. The birthday parties our girl doesn't get invited to. The play dates. The adventures of roller coasters and water slides. It actually hurts us the most for Danielle. Because she is FULLY cognizant of those things going on around her. She knows that those things exist, because in her younger years when she was more stable we did a few of those things with her. Now, we cannot. And it breaks me. Like truly it feels like someone took my heart and ripped it out and crushed it in to a zillion and ten pieces.

So how do we over come this? Well I am not sure but we try in the only way we know how. To just live our life and each day to its fullest and one day the times we have now, we will miss. And my heart will be crushed then, in a different way. So we do family theme nights. This is a way for all of us to be included. And with the baby going to bed pretty early, it allows us some extra time with the big kids. And these nights are becoming a family favorite. We are forced to stop other activities, focus on only one another and we find ourselves laughing during a movie, or during a board game of Sorry when all of us need to draw a 1 and that doesn't happen for an hour it feels like, or during outside time. In these moments everything seems a-ok. Our hearts seem a-ok.

Comparison is the thief of joy I tell you. It is rotten and it is horrible and gosh darn it, it shouldn't exist at all. And maybe some of the exclusion is our own fault. Maybe others assume we can't do things. Maybe because of social media, people 'assume' things in our life are fine. But this is a huge life lesson because you know what assumptions do.....they make an ass out of you and me. Just because you see something that appears to be so fine tuned and well, reach out and inquire. 'Hey friend! It seems you guys are doing so well. I'm happy for you! How is your family?' asking questions most often leads to some type of answer further more than what you 'see' or 'hear' from someone else. We are guilty of that too I know. I try to reach out to my close friends weekly. Even in the midst of the hardest time in my life I still don't want to use that as an excuse to shy away from everyone. Because I know the feeling of loneliness. And what do we have to feel lonely about when Brad and I have each other and our children? Well I don't know. I don't want to fear missing out on any moment at home that I never may get back. And I never want to fear missing out on any moment with friends or family that they may never do again. So what's the answer. We are swallowing our hurt and our pride and soaking up EVERY single memory with our babies. These days we know we will not get back, so I want to fully live up every single second of every single moment of the day. And I never want my children to ever say they feel like they missed out on anything either. So if my kids can one day say they lived a very full life, a very blessed memory filled life, then this hurt Brad and I feel seriously doesn't matter at all. Its just a feeling of a moment. We are doing ok pushing it aside, we are getting better at moving forward. And moving forward as a family of 5, together, is truly all that matters. We will make our own memories together, with others if we can at times, and I sure hope I look back on this moment and feel like I did everything in my power to make sure our children feel OH SO loved, and not the least bit less.

So dance and music parties while the boys are away swimming are just a few things we do. Mom is silly, the girls laugh and smile and in those moments life sure is good. Time stops and nothing outside matters. Nothing at all.

*please don't judge us for these feelings. Please don't take them personal. We are still learning too. Learning about each other and circumstances and family and friend dynamics. We don't want pitty at ALL. We just want to make people aware that these feelings are very real. So maybe it will help someone else at some point if something challenging comes up in their life too. Just help love us thru.