Today marks the day of two years that Dani has survived past her brain injury. Two years we have ridden the Dani Kathryn Roller Coaster, two years we have witnessed a miracle and I have a feeling she isn’t done yet. Dani has more to share with us and we have much more to learn from her. I treasure the days to come and I am honored she is a part of our lives.
Most parents go through the “normal” stages of life with their children, as we did with Kaylee and Brianna. A few go through “special” stages of life with their children. We were blessed to experience both with our children. With Dani, we experienced three different Dani’s in her short lifetime. The first Dani was when she was first born. The second Dani was the brain damaged Dani. This Dani was born on January 23rd, 2006. The third Dani was the post medicated Dani. This Dani was born June 02nd, 2006. Even though some of these Dani’s were hard to endure her struggles, I admire her strength and her will to survive. She is a fighter even though her fight always seemed to be a losing battle. Dani has not utter one word but she has the attention of many people. She is an inspiration for many and she is my hero.
Dani was born July 01, 2005, and what an entrance she made into this world. First, she has the cord wrapped so tight around her neck that the doctors had a hard time freeing her from it. This should have been our first indicator that Dani has her own way of doing things. Once they freed her from her cord, time seem to freeze for me. This was the first time Dani fought for her life. It was a race against time before we heard her feeble cry. Even at this point I was unable to see my little fighter. You see when you have a baby with physical problems, you are shielded from them. The doctor slowly turned around and said “we have her breathing, but there are some birth defects” as she moved so I could see my little girl. Dani was born with Arthrogryposis and Bilateral Hip Dysplasia. In easy terms, tight joints and dislocated hips. It is almost laughable because we thought we were very busy with Dani at this stage in life, little did I think she could get even busier. We were told that we should go through a grieving process for Dani. A grieving process because Dani was not “normal” in their eyes. To be honest, I never did, because I did not see Dani as not “normal” at this point in life. Sure she had some physical disadvantages, but she was “normal” for us. She had a personality, she had a beautiful smile and a very deep giggle. I remember her smile. You see she always had big chipmunk cheeks. When she would smile her, her checks would push up and drool would come out of both sides of her mouth. I miss her smile. I miss her giggles. Dani became a healthy eater. She loved to eat as you can see by her earlier pictures. She was up to 8 ounces of formula and ½ jar of baby food. I remember she would scream at me between bites of babyfood because she thought it should come as fast as her formula did. She would get the food all over her face. I miss feeding Dani her food.
January 23rd, 2006 will forever haunt me. This is the day I lost my little girl. It was me that raced her to the ER because she was struggling to breathe. It was me that consented to intubating Dani. I am forever haunted by this because I had to watch her heart stopping. I watched as they worked to get it going to only have it stop once again. You see, I consented to them hurting Dani. My guilt will forever haunt me because I let them hurt Dani. My baby, I am so sorry.
We are very fortunate to meet many people in the health field. This is known as Dani’s medical family. We had many types of specialists, therapists, and nurses to help Dani. I don’t know how many get to have a chiropractor, pediatrician, physiast, neurologist, neurosurgeon, surgeon, orthopedic surgeon, cardiologist, pulmonologist, GI, Keto Team, ophthalmologist, Occupational therapist, Physical therapist, Speech therapist, Vision Therapist, Orthotics, and the staff at the Institutes. Also, Dani seen many xray techs, CT techs, MRI techs, phlebotomists.Just when we thought Dani had every specialty doctor you could imagine, an urologist was added. I didn’t think it was possible, but we forgot one.
Dani became well known at Sanford Children’s, Gillette Children’s and Avera Mckennan Hospital and she even goes out to Philadelphia, PA to the Institutes for the Achievement of Human Potential.. We pretty much knew all the PICU doctors, nurses and staff on a first name basis because Dani liked to visit them so often. I think the doctors will admit more than once that Dani had them baffled. So was known to the rare thing and get those doctors thinking. When Dani was in the hospital, she made sure everyone was on their toes!
Many of Dani’s medical family referred to Dani as “fragile and frail.” Honestly, it took me quite some time to see that. It wasn’t until May 2007 that I saw how frail Dani’s life really was. At this Dani was entered into Hospice care. Even then Dani was showing us to have faith in her. Dani was pulled out of Hospice after 6 weeks because she was determined not to die, but to go on living and teaching.
I grieve for Kaylee and Brianna. They have been so good through all of this. I had Brianna ask me, “If Dani dies, will I still be a big sister?” Kaylee even said, “She was worried if Dani died, if the family could survive the sadness.” Kaylee had said, “Mom, it is ok that Dani doesn’t remember us, but why can’t she remember you.” Such big thoughts for children to be worrying about. Kaylee and Brianna always put Dani first. Kaylee and Brianna are big helpers for Dan and me even though we didn’t always have time to tell them that. I never see them get jealous towards Dani because she required 110% of our attention. They sat thru many doctors’ visits, they endured many hospital stays where only one parent was home, and they too watch their sister fight for her life. They are the best big sisters anyone could ask for in life!
There are times when I see Abby playing with the doll house at Grandma Donna’s that my heart wants to break in two. Dani should be playing next to her. When I see Jasmin hitting all her milestones in her life, it hurts that Dani wasn’t able to do a lot of them. My baby was cheated out of so much. This is what I grieve for.
In Dani’s short life time, she has touched the lives of many. She is an inspiration to all that followed her struggles and triumphs. I am forever amazed on just how many people she touched. People from other countries would sign her guestbook and we would get emails from many offering encouragement. I treasure the days that someone would come up to me and said, “I read Dani’s website every day, sometimes I check it 3 or 4 times a day.” You see my little girl is a teacher. She taught us all what is important in life. She taught us to slow down life and enjoy the simple things. She taught us unconditional love. She taught us endurance, faith, and to have hope even when it seems all hope is lost.
In my dreams, I see a fourth Dani. A Dani that can interact with her environment and is an active member of our family. This Dani is off her medications, she is alert, she “normal”. I picture her and Abby playing tricks on Jasmin, ransacking Kaylee’s Barbies, hiding Brianna’s Bratz dolls. I can hear her deep laugh and can hear “I love you Mommy.” I can feel her arms around me giving me a hug. In my dreams she is free from her body that has her trapped. No more seizures plague her body. No more invasive procedures. But then my dream always goes into my nightmare of the ER and I usually wake up crying because reality hits me and I realize Dani can’t run around with Abby. My baby cannot do these things.
These last two years have not been easy to be honest, they have been darn right difficult. Just like Dani, I have my good and bad days. It is so easy to be thinking of the “what if’s” that one could get severely depressed in a second. Would Dani be crawling now, would Dani be walking, Would Dani be talking… You can’t even dwell on the past before the brain injury because that too is painful. You can only live day by day because you never know what kind of day Dani will give you.
I want to thank all of you that have helped us these two years. Your support is appreciated and it helps us get thru the tough days.
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Dani's Journal 