Sunday, December 9, 2018

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.