Friday, May 15, 2015

Special Needs Spotlight || Sophia



***Winner of the $500 Land of Nod Giveaway is @askellerlove on IG!***
So excited for you!!  

Hi Miggy! Thank you so much for having my family as a Spotlight! My name is Amy, and my husband Toby and I moved just to Austin, Texas with our three daughters, Sophia, Avery, and Lyla Rose, from the Big Island of Hawaii one year ago. Almost two years ago, when Sophia was 10, she sustained multiple skull and craniofacial fractures, with a sub-dural hematoma, resulting in a Traumatic Brain Injury, caused by a tubing accident at her Grandparents Cabin.
     
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Miggy:  Amy, hi!  Thanks for being here today and sharing your wild, special needs roller coaster that has encompassed the last 18 months of your life with us today.  When most of us hear 'special needs' we associate it with a condition that someone is born with.  However, it's important to remember that special needs can come about from a variety of circumstances like military service, abuse and in your daughter's case a terrible accident.  Can you take me back to the day you knew your daughter was injured? What happened, and at what point did you realize this was life changing?  How have your feelings changed in the past 18 months?  


Amy:  While tubing, a wave threw her cousin's head into the side of hers, with the force of a steel baseball bat, fracturing her cheekbone and  skull in multiple places along the temporal lobe, resulting in a sub-dural hematoma, (bleeding in the brain), and rendering her unconscious. Her Grandparents acted quickly and got Sophia and her cousin out of the water and  to the nearest hospital. (Sophia's cousin, by the way, had a mild concussion, and was released the same day as the accident, and thankfully, has not had any lasting effects because of the accident.) My husband and I were not at the cabin at the time of the accident. We had rented the cutest little motel room on a lake about an hour and a half away, and upon receiving the first call, started to pack up to make the drive to my in-laws cabin. At this time, we knew that the kids had "bonked heads pretty good." Twenty minutes later, we received another call from the ER Physician to inform us that Sophia was being transported via helicopter to a Level One Trauma Center, the next state over in Minneapolis. We had to verbally give permission for emergency brain surgery, and we learned she was unconscious. We had a  three hour drive, not knowing if our daughter would be in brain surgery, or in fact, if she were going to survive her injuries. We pulled over on the side of the road, fell to our knees in a corn field, and prayed.


When we arrived at the hospital three terrible hours later, we were so blessed to find that Sophia thankfully did not need surgery. She remained unconscious for the better part of three days. On the third day, she awoke, and our prayers were answered. She was released after a week with a mountain of information and paperwork for follow-up medical procedures.


Because we lived in Hawaii, we had limited access to specialized medical care on the Island.  I did not realize at first how complex and life changing Sophia's injuries were, as we were so relieved she seemed okay. Sophia suffered from Post-Concussive Disorder, which left her with debilitating headaches. For nearly a year, she had to stay in a quiet, dark room, with very little interaction with anyone, and unable to enjoy reading, coloring, watching movies, the usual things a ten year old does when they're sick. There were many, many tears, nightmares, and dealing with PTSD. As the weeks went by, her medications kept increasing, and I kept expecting her symptoms to improve. When I would speak with her Neurologist in Minneapolis, I was always told the same thing."Every TBI is different, the brain heals at it's own rate, she may always have pain,we just don't know." We had to take an airplane to O'ahu, (the island next to the Big Island) where we were told the same thing, by a different neurologist. Our house was no longer filled with the happy, chaotic noise of our past. Our younger children had to learn to be as quiet as mice. Have you ever tried to keep a 6 and 8 year old very quiet for 11 months? As Christmas rolled by, it had been 5 months, and there was very little improvement for our girl, I was at my wits end. My mama voice was telling me that the answers the doctors were saying weren't entirely true, and I just felt as though there was another answer. She was just not improving at all. After much prayer, and a lot of research, I had found Dell's Children's Hospital in Austin, Texas had an amazing Pediatric Neurology program. I found a highly ranked Dr. who had experience with Post-Concussive Disorder. I sat my husband down and told him that I was moving the girls to the mainland, even though it made no sense on paper, as I had never even been to Texas, we had no friends, family, or job waiting for us. I told him I was sure, and that I had received a knowing feeling through prayer that I was doing the right thing. Blind faith, I said. He was amazingly supportive, and within 5 weeks, my children and I were living in Austin, Texas. My husband stayed behind for 9 weeks to finish up packing, and the overall HUGE effort to move from Hawaii to Texas. We had, in an instant, decided to leave our home, friends, school, job, health insurance, possessions, (It is very, very expensive to ship anything to/from Hawaii, as you can imagine, so we just said goodbye to most of our material possessions.) Sophia's new Dr. accomplished exactly what we needed, for Sophia to be pain free. After three months of weaning her from all of her meds, she found one, ONE, that worked. She also began physical and occupational therapy immediately. The day Sophia woke up without a headache was met with tears, and more tears of gratitude. It is humbling to see your eleven year old daughter crying for gratitude for no longer being in pain.
   
Because her accident occurred on the Mainland, we were considered out of network by our insurance. Because we relocated, my husband left his job, as a commute to/from Texas to Hawaii was not sustainable. This obviously put a strain on our finances, as we watched thirteen years of savings disappearing quickly. Because my husband was unemployed for seven months, and we had several specialized Dr.'s and therapies, the stress was unbelievable. It was at this time that I really considered living separately from my husband, as we were both wound as tight as a firecracker, and yet, still spending an incredible amount of energy on being calm and steady for our children, who were yanked out of school, and everything about their lives were different. It was the most challenging time of my life, even though Sophia was improving. Oh, how I prayed. I decided to use the philosophy of "leaning in" to my marriage. I am very, very grateful I made that decision. We are currently still in therapy, and I am grateful for having a husband who is as willing as I am to "lean-in!" Also, he is no longer unemployed, which obviously, lightens the load.

Miggy:  Explain how your Sophia’s needs affect your day-to-day life?


Amy: Sophia's life is very, very different today than it was a year ago, thankfully! We are no longer required to have a quiet, dim house all of the time, and our weeks are no longer filled with multiple appointments to a hospital. All of our children have been in therapy as well, as the two younger children witnessed the accident, and of course, also lost their home/toys, etc. It is amazing to look back and see how far we've come in one year. We have realized that she won't be able to return to some of her activities we did before the accident, which was very hard for her.  It was also recently discovered that Sophia has been living with double vision, and visual perception difficulties. She is in the less than one percent on some spatial/brain/eye/ coordinating abilities. Essentially, Sophia's eyes do not work together, and her eyes/brain aren't working so well together either, making Sophia the hardest worker I have ever known. This is not uncommon for people with her kind of injury. Because of this, Sophia will participate in Visual Perception Therapy, everyday for one year. This is a challenge, but it will help her so, so much later down the road, (she will likely be able to drive!!), as she is recovering her brain function, and correcting her double vision. How my mama heart broke, realizing she had these issues for most of the school year. Onward!
   


Miggy:  What are the biggest worries that weight on your mind and heart when it comes to Sophia?  


Amy: I have to really work hard to not worry about Sophia's future. My future is just as unknown, really, and even though I have learned that a brain injury will affect her for the rest of her life, I am amazed at my daughters healing and general attitude she's had during this journey. She has come so, so far!  Even though Sophia had to repeat the 5th grade, she is doing amazing! Texas has amazing schools, and she has such an amazing team who want nothing more than for her to succeed. This has been a huge relief, as I know many parents have to really advocate for appropriate special education services. We have had the opposite experience, which has been invaluable in setting up Sophia's academic future. I can see as we are entering puberty, more long term emotional issues that we continue to deal and work through, are presenting themselves with more frequency. I have learned to make micro-goals. Sometimes it is very centering to only have to tackle the day ahead, instead of looking at how far the road to recovery is. I feel that we are more recovered today than we were yesterday.

Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?    


Amy: Yes! There are many, as humor is a wonderful way for our family to deal with the heaviness life sometimes brings. One of Sophia's Visual Perception home exercises involved putting a rubber ball with a string on it on the ceiling fan. I was then, theoretically, supposed to throw the ball in a large circular motion around Sophia as she tracked the ball with her eyes. Her little sister was watching from the couch as I was setting this up. With my first throw, I succeeded in hitting Sophia in the head with a rubber ball. This was repeated until Sophia, her little sister and I had all been hit multiple times in the head with this thing. Sophia said, "pretty sure we're doing this wrong Mom, I don't think hitting someone with a brain injury the head with a ball is therapeutic." We were dying of laughter… guess I'll have to get more detailed instructions for that exercise next time we are at the doctor.

Miggy:  Amy, in your email you told me about the toll this has taken on your family--a move to be near good doctors, PTSD for your other children, loss of possessions and almost the loss of your marriage.  What lessons have you learned from this crisis that you'd like to share?  Is there something you know now that you did not know before?  


Amy: Yes, we almost lost it all, and we did lose a lot, but we kept the most important things. Our family has come out of this battered, and worn, but stronger in our faith, and the power of believing in the impossible. We have gone to yard sales to refurnish our new apartment, and taught our children about budgets. (Ours was cut by 90%, so of course they noticed the difference. It is also their first time living in an apartment, as we have always lived in houses) We gave up everything so our children could have anything. Yes, we had to start from scratch and look bankruptcy right in the eyeball, but we have the unique opportunity to rebuild our battered foundation. We have pushed our abilities to the limit, and in return have seen the product of our hard work, blind faith, love, bravery and laughter, and have it reaffirmed that families can do anything, as long as we are together!

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"Families can do anything, as long as we are together!" Amy, I think that really sums it all up. I will never stop being in awe of a mothers deep intuition--knowing really--that something isn't right for their child and they need to start asking questions and/or looking elsewhere. And while most of us say we would do anything for our children, you showed that you really would and to me, you are a true mother warrior. Again I'm so thankful you shared your story because most of us tend to think, Phew my kids are all healthy or phew, we have a good income or phew, everything is going really well, but as long as we're human beings living on planet earth none of us are ever out of the woods so to speak. Life can change in an instant and you were lucky that you were able to keep "the most important things." I'm so glad Sophia is doing well and so much love being sent her way! Thanks Amy!

I love this job. You guys, please, PUH-LEEZE email me to be featured in the Special Needs Spotlight series. I love sharing, reading and being inspired by these stories. I can't tell you how much my life has been shaped by these stories. So if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.

Mwah! Have a great weekend!


2 comments:

  1. Anonymous10:21 AM

    What a strong family with an amazing attitude! Thanks for sharing their story.

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  2. This made me cry. My husband had a TBI--a stroke resulting from a terrible wreck 5 years ago. I can't think about that day without remembering the rush to get to the hospital and the waiting to find out what we were dealing with. Long story short, he had a multitude of serious physical injuries, but from the stroke (which happened from a torn artery in the back of the neck, from the whiplash/impact of the wreck) his vision was one of the biggest things affected. Like your daughter, his eyes stopped working together. He had double vision for a long time (so frustrating!) and also had to do vision therapy...even now, he wears special prism lenses in his glasses, and his vision is constantly changing, and his depth perception is still pretty affected. For a long time, the way his brain functioned (or didn't function) just made him seem like a different person. I can relate to the unemployment piece, too, and the marriage strain, certainly. BUT, here we are, 5.5 years later, and if you met him today, you'd never know what he's been through, which speaks both to the extent of his recovery and also the ways he's learned to compensate for some of the things he still struggles with. It's felt like a long, slow process (and often isolating), but luckily, the brain really is amazing. Things have gotten better, and I'm so glad to read that they are getting better for your beautiful family, too. And kudos on being such a great advocate and following your instincts. It sounds like you've assembled a great team/support system for your daughters, and yourself. Thank you for sharing your story!

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