Meet BreeAnn - Our Kid of the Month August

Breeann, or as she is frequently referred to in our home Bree Freaking Awesome Gorgeous Girlie Ann. Just so you know the reason she earned the title Freaking Awesome is that even though she is gutless (has less then 10% of her intestines), Bree loves to run and play she frequently carries her own weight on her back (she has a IV line and a g-tube. she carries those machines in her backpack) and use it as an advantage. BFA loves to wrestle with her brother, who amazingly is about a year older and weighs less. Now as many of you know weight in wrestling is a big deal. After the boy starts to engage Bree Freaking Awesome will lean in grab her brother and smother him to to ground. They both laugh and play and love the park. The girls favorite thing to do is go down the slide. As she goes down her face is in a state of pure terror and quickly changes to giggles as she lands safe at the bottom. We love our Bree Freaking Awesome and people think we are more awesome just because she is close by.

Gorgeous Girlie is not just how she looks on the outside it describes her through and through. Our little Ann loves to pick her cloths and to have her hair so pretty. After getting ready for the day this little girl will give her Mom a hug and kiss and say “Thank You Mom”. Just to melt Mom’s  heart. When anyone comes home our Gorgeous Girlie Ann will start to laugh contagiously and yell for you until she gets her required cuddles. If our GGA is ignored for too long she reaches up and asks “Up Please”. Our Girlie is Gorgeous thru and through. If you ever run into our Bree Freaking Awesome Gorgeous Girlie Ann she will be more than excited to see you and yell “HIIIIIIIII”.

Please feel free to contact us with any comments or questions. We are foster to adopt parents (both of our kiddos came to us this way), we are infertility survivors, and just love making new friends. Feel free to check out our blog too

jndpayne.blogspot.com

jndpayne@gmail.com

Canine Companions

The reality of the future was starting to sink in.  Nathan is a beautiful boy who is one of 5 children in our family and has the diagnosis of Autism.   Nathan has such a tight bond with his siblings that we have worried what he would do and how he would feel as everyone grew up and moved on.  Upon attending a conference at Nathan’s school, the Carmen B. Pingree Center for Children with Autism, our journey began.  The organization Canine Companions was in attendance at the conference with two of their amazing dogs.  Knowing that Nathan loved dogs, I went and got him out of class and brought him to see the dogs.  The moment Nathan saw the dogs he dropped to the ground and started snuggling and playing with the dogs.  He was in total heaven.  This could be a possible answer for Nathan.  A dog is not going to grow up and move on with life.  A companion dog would do exactly that, be Nathan’s companion and buddy for its whole life.  Not only that, this was a skilled dog that by law was allowed anywhere Nathan went.  The dog was protected by the Americans with Disability Act (ADA) and could go into any public place with no questions asked.  This dog could go to the doctor with Nathan, stay with him if he needs to stay in the hospital, go to the grocery store, travel on the airplane (without needing to buy an additional plane ticket and sitting by Nathan’s feet), go into any theme park, stay in a hotel room, movie theater, restaurant, etc.  So, I took their information and immediately contacted them to start the process of getting Nathan a Canine Companion.

After filling out all the necessary paperwork and going through the interview process, we got the call.  Nathan had been matched with 2 possible dogs and they wanted us to go to their training facility to be matched and get trained.  Canine Companion is a non-profit organization founded in 1975 that breeds, raises, and trains Golden Retriever, Labs and Golden Retriever Lab mixed dogs.  Through donations and volunteers, families who apply and are accepted receive the dog at No cost to themselves.

Nathan and I packed our bags and we were off to training in Oceanside, California.  Canine Companions invites and allows you to stay at their facility free of charge.  You stay in a private room where you share a kitchen with the others participating in the training.  Upon entering our room we found the largest gift bag that I have ever seen.  The attention to detail was unbelievable.  The teachers in each class were very personable and understanding of those with disabilities attending the class.  There was plenty of time to ask any and all questions or receive additional help when needed. Amazing volunteers came each and every day and donated their time to make us lunch.  These were not ordinary lunches; they could and often did feed us again at dinner time. 

We worked with different dogs each day until the day of matching.  Upon being matched it became very obvious that this organization looked into every detail.  The temperament and strengths of the dog was taken into consideration and how that matched the needs of the child or individual.  These guys knew and definitely know what they are doing.

Upon returning home we have found Nathans canine companion to be such a blessing to his and all of our lives.  The dog meets all the needs that Nathan has.  When taking Nathan and the dog out into public I have found that we get more stares but not always in a bad way.  Nathan looks so “normal” that the dog and his vest helps other to see that there is a reason that he is acting the way he does. 

I would strongly encourage anyone who has ever thought about getting a canine companion for their child or individual with a disability, to do it.   You will not regret your decision and it will benefit the person more then words could ever express.

Canine Companion has changed our lives in so many ways I would not even begin to express or put into words.  They truly are the best and unbelievable!!   Canine Companion ~ 1-800-572-BARK(2275), info@cci.org or www.cci.org

Jessica Kerr ~ Nathans mom

Lessons learned in Epilepsy

I am so honored to be included in the listing of guest bloggers for the Utah Kids Foundation. I was asked to write about my experience with epilepsy and seizures. While this is something I have written and spoken about many times it is still a very personal topic so you will have to forgive me having to go back and give some background information about my family in order to show where we are now in the mix of seizures and the things that I have learned.

                My husband Erik had his first seizure after a fever at 3 years old. In his early teen years he started having seizures frequently. For many years he had seizures a lot. By the time he met me he was only having one seizure a year on average. So when he told me that he had epilepsy it didn’t seem like that big of a deal to me. Although I did have to go look up what the word epilepsy meant in the dictionary (yes we use to have to do that before google). We had been married six months before I saw him have a seizure. What he didn’t tell me is that he could have more than one in a day. So he had two seizures then a third. I called his dad and told him I didn’t sign up for three in one day and he could have him back. This is really the beginning of our seizure journey.

                Kimmie was born in May 1998. She was a beautiful healthy baby. From the beginning Kimmie had a mind of her own. Two and a half short weeks later Kimmie had her first seizure. Six months later she started having seizures regularly. Her seizures started with tonic clonic (grand mal) seizures and they lasted an abnormally amount of time (5 minutes to 90 minutes). Between hospital trips we spent a lot of our time relearning basic developmental skills. At five years old Kimmie had what some call a catastrophic seizure. She ended up seizing for 6 hours straight. We are very blessed that Kimmie came back to us and that despite all of her setbacks we have our beautiful girl.  She is now 16 years old and has had hundreds of thousands of seizures. She is currently having quite a few seizures a day (mainly myoclonic, complex partial and absence seizures). We have gone out of state three times looking for answers and are currently bring in medications from other countries in trying to help. With the help of some amazing mom’s Kimmie will hopefully begin her CBD treatment in the late fall or winter this year.

                A little over 3 ½ years ago Erik went from having one seizure a year to a seizure in the bathroom that changed our lives. Erik started struggling for over 9 months to return to “normal” life. It took 2 ½ years from that life changing seizure to get Erik a VNS (Vagus Nerve Stimulator). It is a device that is placed under the skin and attaches to the Vagus Nerve and sends impulses to the brain. This has been a heaven sent treatment for Erik. He went from having seizures almost daily to one seizure in the last seven months (knock on wood).

                So with all of this being said what things have I learned:

11.    Do not take even one day for granted. It can all be over so quickly.

22.       Enjoy the good days. The dishes will still be there and laundry never ends but the opportunity to fly a kite may only come once.

33.      Find people to talk to who understand what you are going through. They can be some of your best resources and biggest strength.

44.    Trust what you think is best for your loved ones. Doctors are just practicing medicine. They do not know everything. They are educated and a lot of times have the best ideas and help. Although you are the one who knows your loved one the most. If you don’t feel right about a treatment look for other options or other doctors.

55.       Find who you can rely on for back up and moral support. You will need a friend to cry on their shoulder, or babysit your other kids, or just someone who knows when you need an ice cream.

66.       Despite what doctors say you will never “get use to” seeing your child have a seizure.  You do learn to cope after time and know what to do a little bit better. It doesn’t ever fix it or make things go away you just cope a little easier after time.

77.       Despite my best efforts I can’t do it all. Some things have to wait or cannot happen at all.

88.       Give yourself a break. I know as a mother I feel like I need to be everywhere and do everything when I can’t I feel guilty. So try and remember that you are important so are your children. Do what is the best for your family.

99.       Put the tape measure down. Don’t compare your special needs child with anyone else’s child. While you may wish more than anything that they were doing certain things you and your child will always be on the short end of that tape measure if you keep measuring.

110.   People will say stupid things. Sometimes it is in hope that it will make you feel better (or them feel better). I swore at times when people said, “God only gives special children to special mothers,“ or “I couldn't handle what you do, you handle so much,” then I was going to punch someone.

111.   I learned that I can overcome insurmountable odds and I can fight for what is right even when I am standing alone.

112.   Last but not least how truly meaningful a kiss and hug, or an I love you can really be.

I hope that something I have said have helped someone and that our journey will continue to grow and learn.

The Day my Daughter became a Princess

I have a precious 7 year old princess named Isabelle Grace. It is ironic that I chose this name because it translates to “Gift of God’s grace”. I didn’t understand how profound that decision was until years later. Isabelle has a rare genetic disorder called Rett Syndrome. Rett Syndrome is a fluke genetic disorder. At birth, they are beautiful and perfect; ten toes, ten fingers, bright eyes and a coo to melt any mother’s heart. Sadly, many of the things we take for granted were robbed from her. Rett Syndrome starts off looking like autism, but it is so much worse. They also develop symptoms of Cerebral Palsy, Epilepsy, Parkinson Syndrome , Autism and in Isabelle’s case, the inability to eat by mouth. She has always been my little princess. Her eyes light up when music is playing and loves to be danced about. Her mind is keen and sharp but she is unable to speak. She speaks volumes with her eyes; you just have to be patient to hear her story.
I had an amazing day with my daughter a few years ago and I  wanted to share with everyone. It was my  nephew’s birthday. He wanted to go see the movie “Brave” and then we all went to dinner at a buffet. Isabelle has never been able to sit through a movie because the noise of the movie becomes overwhelming. For those who have not seen this movie, it is a Disney Princess story of a tomboy princess who wants to follow her own dream and not one dictated by society. While we watched this movie, the thoughts became increasingly strong in my mind. Disney has done something very profound in a very subtle way. My daughter is indeed, a princess. She may not be the tall, willowy, statuesque woman that is typically portrayed; she is a warrior of life. She is beautiful in every admirable way that is not seen by an image alone. She is strong, she is smart, she teaches and leads many, and above all is “Brave”. Tears began to stream down my face as I held her, and I was reaffirmed at how truly amazing my daughter is.
After the movie we made it to dinner. Isabelle is fed through a feeding tube because she does not have the muscle strength to chew. It has become tradition when we eat out to get her a small dish of whipped cream. It melts instantly in her mouth and she can savor the taste of sugar. It is no small feat, mind you. We carefully work with her to keep her hand from her mouth, and to keep the drooled food from becoming too much of a mess. As I sat there, enjoying my daughter in this new light, a kind elderly man came and stood next to me. He asked me my name to which I replied “My name is Syndi and this is my daughter Isabelle”. I am accustomed to introducing her to others. The man bent near to my ear and stated he has been a special education teacher for many years and he wanted me to know that my acts of service and love he witnessed had touched his heart. He wanted me to know that my acts were noticed and that he was proud that I would give my child such love.
What more could a mother ask for? I had a renewed faith in my daughter, and although I was not seeking recognition, my acts were noticed. I am truly blessed to be able to witness how amazing the little things are, and how truly much they matter. That day boosted my confidence a little bit more, and gave me a little more reason to keep learning from my daughter.

A Glimpse Into Parenting a Child with Mental Health Issues

Unique. Exhausting. Beautiful. Sweet. Spunky. Smart. Quirky. These are all words I have used to describe Emma. They are all 100% true. On the other end of things I usually keep it simple when explaining why Emma does and behaves the way she does. I stick with the blanket statement of “She has special needs”, it’s easier and most of the time I can get away with that much else. The reality is not only are we dealing with significant developmental delays, sensory & auditory processing issues & medical ups and downs, I am also the mother of a child with mental health struggles. How extensive? She’s too young to know. What exactly are we dealing with? We are still working on figuring that all out.

Mental Health still has a terrible stigma attached to it. You say it and people instantly get very uncomfortable. You start talking about a 6 year old and people can’t seem to compute that, like their brains simply cannot understand what you are trying to explain. Explanations seem to be met with “she’ll grow out of it” or “she’s just spirited” which is when I start visualizing myself slapping this person. The reality is – this will not be something she will grow out of. It will change and adjust and I will help Emma in every way possible to have healthy coping skills and understanding of what is going on.

Emma, despite her delays, she is becoming more and more aware that she is different. I am sad she has to deal with being “different” and what that will mean throughout her life, but I like that it makes the conversation easy. Here is an example. A couple weeks ago we had a MAJOR meltdown. I’m talking hitting, spitting, biting and complete loss of control. After, Emma was incredibly remorseful and kept sobbing “what is wrong with my brain?” I cried too… as her mom this was a particularly painful question. But I felt like this was a crossroads for us. Path 1 – just go with the there is nothing going on everything is fine (it was very enticing – not going to lie!!) or Path 2 – be open (age appropriately) and talk about it. I felt like at that moment it was my door – the opportunity to address it. She KNOWS there is something different, I fear that if I undermined or ignore how she is feeling she will end up not trusting what I tell her in the future. So I carefully stepped in to the conversation which  was strait and simple, and it was hard. I told her that yes her brain acted differently that even mommy doesn’t always know why and there is doctors to help us with that. I reassured her that no matter what I loved she and that WE were going to figure this out together. She asked me when we would be able to talk to the doctor and I assured her I would schedule an appointment. We were able to get in the next week, which I told her. She then asked me what would happen if it didn't work. I again reassured her that it would work, it will just take time and help and that we were again doing it together. Just like that we ended with a snuggle and a kiss and we were done. I know that this is just the beginning of the conversation and that there will be many more like it, but we are taking this little journey day by day.

Emma is a Unique. Happy. Beautiful. Sweet. Spunky. Smart. Quirky little lady who also has a Mental Health diagnosis. It doesn't define her but is part of her. I totally understand that everyone’s journey is very different and am not judging those that make a different path! This is simply what worked for us!!

About Lindsay – I am a single mom to Emma an adorable 6 year old full of spunk. Co-founded of Utah Easy to Love a support group for families raising children with special needs, crafter, blogger wanna-be, lover of decorating, reading and spending time with family and friends. My journey with Em started off bumpy with a lot of medical struggles and hospital visits. While we continue to struggle with various medical issues our primary focus is on her development, mental health and behavioral struggles that we are still trying to untangle. Despite these ups and downs I am one proud mama who absolutely adores my tiny bug.