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.

Sun's out....Smiles out!

And its as if the weekend wasn't terrible at all. I mean the breathing junkiness and such is still there and very noticeable but as far as personality there are smiles, a little bit of talking and our girl has slept well, not needed any meds to get comfy. She gave her Daddy some fits while eating because she was actually hungry. These moments are our Danielle, our girl that we have loved for 9 years. These moments make it easier to forget the scary ones.
This is our girl that we know. These are the voices of our daughter, the giggles when her sister squeals or her brother let's out a big ole' toot, yep his gas is so funny to her, LOL! She is 9 after all :-)

So today we enjoy the sunshine. Enjoy a moment at a time. Try and not sweat the small stuff, or the many hairy days we had before. It is so crazy that as fast as the scariness, touch and go moments come on.....4 days later it switches and she ok, for the moment. The rollercoaster affect is real.
We soak up all of these sunny moments we can get. Isn't she beautiful!
xoxo-