Coyotes Game with Hopekids

We attended the Coyotes Game through Hopekids. It was so nice to be in a suite. With Levi having special needs, not understanding his boundaries and not being able to sit still, sitting in a stadium seat is unbearable. We were fortunate enough to be in a suite, plenty of leg room and the choice to be able to move whenever we want is another plus. We came and thought we were prepped and going to have a good time. As the game started, I looked over to check on Levi and this is what he was doing.  I did not know that every time a goal is made, the lights flash and the stadium rings a bell. Flashing lights and loud sounds trigger seizures, so I had to cover his eyes every time. 

My son was overstimulated, cold, and couldn't handle the noise. He was using his brothers' jacket to muffle the noise over his hooded jacket. He was curled up and starting to shut down. When I took him to the bathroom with me, for a movement break, he was sitting in the corner of the bathroom stall in a fetal position, covering his ears and whining. I called Aaron, explained what was happening. I couldn't believe how sad this was to him. I have never been to the coyotes game, so I didn't know what to expect. I wasn't prepared. I felt awful. Aaron went to one of the security guards explaining he needed ear buds to cancel out the noise for our special needs boy. Those foam ear buds did the trick. He was back to himself, eating snacks provided in the suite and watching Jack Frost on the TV. 

Our niece Ashlynn came because Brayden was not feeling good and we needed to fill that ticket spot. We are so lucky she came. She and Brooklyn enjoyed each others company and were fun to watch as they tried to get on the Jumbo-tron.

Thanks Hopekids for giving us this opportunity to go. We appreciate it.

Donated Bikes for Hope Kid and Siblings

Andreas' Closet partnered with The Lost Dutchman Motorcyclist Club who donated hundreds of bikes and toys for the Christmas Angels Trees in Walmart and Hopekids. My kids were able to come, pick out a bike & helmet of their choice,  and walk out without having to pay anything as it was a donation.  Here is the story from 3TV.  If I knew they were going to take pictures and that I would be on Tv, I would have actually got dressed and brushed my hair.  😂

 https://www.azfamily.com/news/lost-dutchman-motorcycle-club-buys-gifts-for-hundreds-of-christmas/article_19eab98c-fc33-11e8-8f68-8b7eb15de474.html

Thank you Grandpa Richins for letting us use your truck so we could transport the bikes home.

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Movie Under the Stars

Through Hopekids we were able to attend a Movie Under the Stars and watch Incredibles 2 outdoors. It was a movie I couldn't bring Levi to, as it has several scenes with flashing lights that will trigger seizures. We were fed cotton candy, popcorn, pizza, fruit snacks, soda & water. Then given glow sticks and light up fidget spinners.

We brought our own chairs and blankets. It was actually really cold and I am so glad I dressed warm. I am glad that my teenagers came and enjoyed the fun movie and food. I am glad that we have the opportunity from Hopekids to enjoy fun events that we can bond and make memories as a family.

Merry Christmas

I cannot believe I didn't take as many pictures as I wanted of visiting family on both sides of the family. We had a great Christmas Break and a great Christmas.  On Christmas Sunday, all my boys wore sweaters and were dressed handsome, I wish I got a picture of that. Our Outfits all matched. Mckay and I wore a Navy Blue Gingham top. Brooklyn and I wore cheetah print. And the boys wore either black or grey sweaters.  

Brooklyn's Christmas Sunday outfit. We were late to church. I wanted to snap a picture for my Mom as her dress was part of her gift.

We went to my parents house for dinner and made Gingerbread houses for dessert. It was fun and even the teenagers got involved in building their houses. Some of the adults were involved helping those that needed help.  I knew that this would be just so fun for the kids to enjoy and eat as they entertained themselves. 

Mckay has a crown of leaves on his head, like Ceasar. He looked so cute.  Brooklyn struggled with her house, she flipped her plate upside down thinking that would help balance her house out.  She ended up requiring help from Uncle Jesse. 

Mckay's Gingerbread House. I cannot believe I didn't get everyone else's. Levi's house was built for a second before he started eating it.  :)

Charlie & Brayden building their two story mansion. It held well and they both spent so much time on it. I am proud they spent so much time on it. 

On Christmas Day, these are the only pictures I actually took. Our Tree and Levi watching his new Paw Patrol Movie he received in his stocking from Santa. He was so happy.

🎄I was in heaven, because I was catching up on some much needed sleep. 

Hopekids Pizza & Cake

We attended a Pizza and Cake event with Hopekids. We never really know what to expect at each event, whether it be school, church or family event with Levi. We are so glad we went. It was a great opportunity for us to bond with Levi and Mckay one on one. Since Levi requires so much attention, my other kids have been receiving less attention and they are struggling.  The pizza was delicious and we each made our own.  The kids also decorated their own cupcakes and ate them. 

Since being on their journey with Levi having Epilepsy and Special Needs, how his Epilepsy isn't going away or getting better we have been struggling. For me, I have been so isolated and not having another person to turn to that has already been down this road. Levi wanted to go outside and run around. Aaron was outside and talking with other Moms' about how Levi is getting ready for the VNS (Vagus Nerve Stimulator) surgery and how we have been so worried. This Mom he was talking to, said she had a niece who had it. She said how she saw a difference in her seizures and her life. We have NEVER had anyone to turn to for something like this. This was a glimmer of hope that I was leading in the right direction. This road has been so hard already, but I am starting to see small glimmer of hopes that I am going down the correct path. 

Aaron and I both felt grateful that we were able to meet someone who had a good experience with the VNS surgery. We had hope that Levi would do okay and this surgery would help him, possibly reduce his seizures and pain that he is constantly in.

Mckay had a smile on his face the whole time. I helped him roll out his pizza dough. I helped him with his toppings. He made friends at our table and made more friends when we were outside running around with other Hopekids. We were accepted and loved, no matter our circumstances.  It was a nice time together and we are super grateful for that bonding moment to make memories together.

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Sibling Love

On Veterans day, we went to the zoo. It was packed with so many veterans and kids and it was fun. I had my whole family there and loved it. At the end of our trip, we were walking out but saw these beautiful pelicans. Mckay and Levi's relationship has grown tremendously and still needs improvement, who doesn't need improvement? Levi now hugs and kisses Mckay when he is happy and wants to share that love and happiness with him. It is so cute to watch and know that they are building their relationship.

Mckay and Levi LOVE to sleep in Brooklyns' room. Our rule is only on weekends, this is allowed because they play and don't get as much sleep as they would sleeping in their own beds. This paticular night, Aaron and I were on a date. Brooklyn called us in a panic that Levi had a seizure in his sleep. He woke up, said he had a seizure and whined. Brooklyn prayed to Heavenly Father to ask Levi to stop having a seizure. Levi did stop and then said he wanted to go back to bed.  I am forever grateful that Brooklyn was there to help when I could not. It was a bonding moment in her life and I have seen Brooklyn change for the better. 

I wanted to share the love my children have towards their brother Levi. Levi is very hard at a lot of times, and even when we struggle and have a rough day, at the end of the day, we still love and appreciate Levi. I know I do not give my children enough credit of how much I appreciate them. I try to improve where I am struggling. Brooklyn, my daughter has told me lately how she wants to work at Hopekids Foundation and wants to have a special needs child, preferrably a Down Syndrome Child. I have never heard of any teenager plan to have or want a special needs child for their life. I KNOW that she is learning to love everyone from all backgrounds and all needs in life. I KNOW that she is paying attention and trying to be close to Heavenly Father. She is an example to me. She teaches me new things every day. 

On this particular day, I took Tanner, Mckay and Levi to a Hopekids event at Sea life Aquarium and LegoLand Discovery Center in Tempe. The boys were counting down the days and was so excited. It was also a stressful day. After a long full day at school, Levi is tired and overwhelmed. He usually has between 5-7 seizures at school, not including what he has at home. Overstimulating him causes more seizures, which makes it challenging at these fun events. With Levi's special needs, he doesn't pick up on social cues and boundaries. This is another challenge that we have to maneuver through, daily. The boys are learning to communicate and bond with Levi. It is so nice to see them work together and get along. 

I just wanted to remember the growth of my children bonding and building their relationship with Levi. Not everyday is stressful, we have many good days, but they all take a lot of work. We are forever grateful for having Hopekids in our life. It makes us bond and look forward to really cool events. 

Trip to the Childrens' Museum in Phoenix, Az.

We got accepted into The Hopekids Foundation this year. Hopekids Foundation is for children who have life threatening diagnosis. The Foundation treats our Hopekid and family so well. They invite and strongly suggest for siblings and parents to come to the events they put on, even if Hopekid cannot come. They know how isolating it is for families who have to deal with so much medical appointments, therapies, surgeries and stress. They want us to bond as a family. 

We are so blessed to be apart of this foundation!

Everyone came but Brayden. He had a soccer game to go to. We missed him.

With a large family who is all into extra curricular activities, we don't always get to go to events together all the time, but we try.

This place was really fun. It was a first for us. I was able to let my older children explore on their own. I was able to bring in food and eat in the cafeteria. Note to self: bring an actual lunch and keep in portable cooler, not just snacks. This whole museum was very kid friendly and so fun, even for us adults. 

Thank you Hopekids! We had a blast and made so many positive memories with our family.










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How To Manage Stress

Being an advocate and caregiver for my Levi is so much work, at a lot of times it is pure exhaustion! I deeply love being a Mother to each of my children. I am SO very grateful for the opportunity for me to be a Stay at Home Mom. I am busy with my own dreams and goals, as well as running the household. I am slammed when the kids arrive home from school. It is so important to me and Aaron that I have enough time to manage my stress. Raising as many kids as I have AND having a child with Special Needs, adds A LOT of stress to my life. I have created a list that works wonders for me.

This will make you smile.  :)

(Levi is eating his favorite snack- Raw Broccoli)

How To Manage Stress

• Exercise 

Exercise takes energy that is hard to get when you are drained. I add a little pre-workout caffeine to my body daily routine and I am able to get to the gym. I actually enjoy walking on the treadmill and lifting weights. I feel like a warrior once I complete my workout. I am always less stressed and if I had a headache, it is always gone. I am in a better mood and depression subsides when I workout. I strive to workout daily.  

• Deep Breaths

You can do deep breaths anywhere and it works! I have to breathe deep when someone cuts me off the road. I have to take deep breaths when I need to "bite my lip". It helps me process my emotions and thoughts more clearer. You cannot take back when you didn't mean to say, even if you are truly sorry.  Breathing Deeply helps improve digestion, De-stress and feel energized. These factors go on high alert when you are stressed. 

• Hot Baths/Showers

I LOVE taking hot baths and showers, although I prefer baths over showers. I always feel so relaxed and calm after I soak in the bath for at least 20 minutes. In my opinion, you have to set the mood just right so you will enjoy it too. I use Epsom Salt with Lavendar oil and turn the lights off. I fill the bath water as high as I can and have the temperature as hot as I can stand it and be comfortable. I sometimes listen to soothing music or a podcast I enjoy. I sometimes will read through a magazine or a book. You can light a good smelling candle. You can also add essential oils and bubbles.

• Sleep

I cannot stress this enough! Nap whenever you can. If you are like me, you will see me staying up late trying to catch up on my daily assignments I couldn't get through and tidying up the house before bed. I am a night owl, but I do take naps whenever I can.  It's almost like having a newborn...sleep when kids sleep. But for reals!

• Pray

I believe in God. I believe in the power of Prayer. I believe that Heavenly Father listens to me whether I am happy or sad. I believe he answers my prayers. I pray often. I usually am always praying for strength, safety and help. I do also pray in gratitude to my Heavenly Father for appreciation for staying at home with my children, being a mother and for the many blessings I have.

• Journal

I choose to journal my thoughts on this blog. It is very therapeutic to me. I also sometimes journal my inner most feelings that I don't share with anyone in a hardbound book I keep in my nightstand. Mostly, it is just a diary of my day as well as questions I am searching for myself and writing out to Heavenly Father. 

• Read

I am a big book reader, when I get a good book I am into. I love Non-fiction books, Mysteries, Trauma & Survival. I am learning to love the Book of Mormon. I listen to my personal scripture study online through my phone while I am multi-tasking at home. I comprehend the scriptures better. Regardless of you choice of book, it is nice to sit and read, feel calm and relaxed.

Special Needs Siblings- What Life is really like

As you know I have 5 children, 4 of them are "normal". Which simply means they do not have Special Needs. The siblings to a child with Special Needs has a lot of work on their plates. They have to adjust to a schedule and life they didn't choose. They have to help care for a Special Needs sibling, which is stressful and exhausting. My kids have to put their feelings aside and realize that their brother Levi can't handle the excitement, questions and interactions they want from him. They have to adjust that our lives aren't like their friends and we can't always do everything their friends' families can do. It has been so very tiring and exhausting on my other children. I see it everyday in their faces, in their behavior at home and when they explain their feelings to me.

(Tanner, Mckay, & Levi cashing in their free personal pan pizzas for good grades)

I have created a list of 5 ways to help Support Siblings of a Special Needs:

1.) Tell the siblings in words how you appreciate them.
I know I do not do this as often as I would like. I know that they need it more then I have expressed to them. My children are a HUGE help in my daily life, even the smallest tasks aren't over looked. Sometimes I forget to tell my children how much I appreciate them. I know that when I express my appreciation to them in details they love it.  I simply say things like "Thank you so much for making Levi a snack after school. I really appreciate you for serving your brother."


2.) Apologize that their schedules are chaotic.
It is not fair to the siblings schedule to be chaotic. They did not choose to have a brother with special needs and they did not choose that our schedules really have to revolve a lot around Levi. It's not fair to them and they need to hear that. I want them to know that I agree it isn't fair and I appreciate them for trying to adjust.  I have simply said "I am sorry our schedule is chaotic and stressful. I can tell you don't appreciate it and it stresses you out. I appreciate you for trying your best."

(At a Private Screening for Incredible 2 with our Orthodontist)

Tanner, Mckay, Levi, & Me

(Brayden & Levi spending time together after school)

3.) Spend One on One Time with Each Child.
I cannot stress this enough! When you have a Special Needs child in the home, your other children tend to get pushed to the side, because you are so busy being an advocate to your Special Needs child. It is not fair to them that you are exhausted and drained. It is not fair to them that you are overwhelmed and don't have enough time for them. They need that connection and love from you. What works best in our home is to schedule time out on the calendar. We agree on a date and time that works best for both of our schedules. Then we plan out what we are going to do.  Sometimes we watch a movie together, kids choice. Sometimes we play card games or board games together, kids choice. Sometimes we go shopping together and go out to lunch, listen to the kids talk about their day or vent.  How I get them to hang out with me, I simply say "Hey Brayden, I know I don't spend enough time with you, can you look at your schedule and I will take you out to lunch? What day works for you? Where do you want to go?"

(Aaron & Mckay at the Diamond Backs game- we were given 2 free tickets from Grandma)

4.) Connect with your children.
 I try to reach out to my children, one on one and let them know how much I appreciate them. I do not get the chance to do this everyday, but I try my best to speak to them with kind words. Give your children hugs, kisses on cheeks, words of appreciation, pats on their backs and smile at them.  When I do these things with my children, I can already tell they feel appreciated and loved. I give my teenagers Brayden & Brooklyn and well as my younger boys hugs and tell him how much I love him. When I talk to them in a kind heart and loving tone, they never push me back. My children have stressful lives at school and at home, I don't want them to ever feel like they aren't loved or not appreciated. I have said "Hey Brooklyn, How was your day at school? What was your favorite part at school today?"  "Brayden, what's your plans this weekend?"

(Brayden sleeps a lot in the car. I decided to snap pictures at every chance I get)

5.) Check in with them daily. 
Ask them about their day. Go through their schedule with them. I always tell my children that I love them before they leave for School. We strive to have prayers and scripture study before school (it doesn't always happen).  We carpool to school right now, and when I pick up, I welcome my children and carpool buddy in the car and listen to them telling me about their day on the way home. I ask about upcoming games they are playing in, I ask about upcoming tests and ask if I can help them study. I ask them how school was. I feel like it is always important to check in on my children and make sure they are okay. I want them to feel like their feelings and life matters, even though I have a busy schedule. I can make time for a check in.

Your children will feel loved even if you can do this checklist once a week. They want and need to feel that connection with you. It is something, us humans crave. Do your best! They will appreciate you for trying and asking.

A Special Needs Family

Looking at a family who has a child with special needs looks a bit different then you'd think I bet. Special needs children have different disabilities, some look "normal" and some do not. Some are capable of having full mobility and some get cool wheelchairs to stroll through life.  What you don't see is behind closed doors, especially if the family has other children that are "normal". What you don't see is a life they didn't prepare for or expect for their future.

My husband Aaron and I work tirelessly and serve with all our energy all day long out of love for our children. We do research, pray and fasting and search for answers for our family. We work all day long to tend to all of our children's needs and devote time to them.

Once you devote more time and energy to your child with special needs, you will find that your "normal" children will feel left out and get pushed to the side. You don't do this on purpose at all, it just happens and it's not fair. My "normal" children have to adjust to having a more "zombie Mom" who runs out of energy extremely fast. They have to adjust to lots of doctor appointments, babysitting their siblings a lot more then usual, even when they don't want to. They have to adjust to a more busier and chaotic schedule, a messy and stressed out house. It's not their faults, they don't get a choice, and it's not fair.

What we parents get in return is more melt downs, crying children, arguing and tired children all. the. time. Our house is never clean and I have learned to let that go! What I think is important to learn from this is if you've been wondering how to help someone in your church, on your street, or a friend that has a special needs child is to just love them. Pray for them and love them.

(Mckay, Levi and Brooklyn sleeping in Brooklyn's room. This night Brooklyn was able to help Levi after he woke up from having a seizure in the middle of the night. She was able to help get him back to sleep. I am so thankful that she was able to be there for Levi.)

If you want to help alleviate the work for the friend/ family member, here is a list that has worked miracles in our family:

* Pray & fast for the family. It is free and it works.

*Bring in Dinners. Arrange with parent on days that work best. 

This will take one stressful thing off the parents to do list.

*Drop a treat by randomly for the family to enjoy. 

This lets the family know you are thinking about them.

*Text the friend letting them know you are thinking about them. 

*Ask the family to a park date. Have your family there too and just hang out and talk.

*Ask the Mom out for a Girls Night Out.

 It is pretty isolating when you are a parent to a special needs child.

*Drop off money donations or gift cards. 

You would be shocked at how much money is spent on medical bills, doctor appointments, medication, surgery, therapy, etc. 

*DO NOT make empty promises!!

This is the most disappointing and heart wrenching item that is so hard to look past!

How To Interact with a Special Needs Child

You might have a friend or a family member that has a child with Special Needs. You might feel disconnected with their life and want to try to feel the gaps with trying to be in their lives more. You might feel like you’re not sure what to do, but you want to help. I promise if you ask the parents of the Special Needs child how to help, they will give you the best advice of how to connect with the child, because they live this life every day. I promise if you ask with a kind heart and soft words, your love will feel appreciated. We as parents, can give you tips and advice that has worked with Levi and most likely will work for you too. I have created a list that works at our house. We use this same list when the siblings talk with Levi and when we want to interact with Levi.

(We are by the Lion's Gate at the Phoenix Zoo)

Please understand that a Special Needs child will not accommodate to you, and adjust to what you need. You are the adult and you will need to accommodate to the child. This is not a request that works for the adult, it simply is what works for the child.

*Ask the child how they’re doing today. 

“Hi Levi, how was your day today?”

*Ask the child if they have a favorite stuffed animal. 

“Levi, I heard your favorite stuffed animal is named Stuffy. Can you show me him?”

*Ask the child what their favorite toy is. Ask them to show you the toy.

 “Levi, I heard you love trains. Can you show them to me?”

*Sit down and speak to them at their eye level, show you care with a loving tone of voice. 

Be patient and listen to them.

*If they have a pet, ask them about their pet. 

“Levi, I heard you have two turtles. Can you show me them?” 

“Oh he is so cute, I bet he makes you happy.”

Please keep in mind that children with Special Needs gets over stimulated easily and can have melt downs. They might not answer you when you’re wanting feedback right away. Be patient and try again.  Make sure not to pry too much, there is a fine line before you over stimulate them. If you want to interact with them, play with them. It could look like building legos together, tossing a squishy ball together, playing with trains together. Ask the parents for more ideas. Trust me, it will mean the world to the child if you play with them. It will help heal hard hearts, it will make you feel good that you served the family, and it will make the child feel so happy.

(Brayden is carrying Levi around on Christmas Eve when we visited the Temple Lights. Do you see that smile on Levi's face, he is so happy).

"But love ye your enemies, and do good, and lend, hoping for nothing again; and your reward shall be great, and ye shall be the children of the Highest..."

Luke 6:35

"Thou shalt not avenge, nor bear any grudge against the children of thy people, but thou shalt love thy neighbour as thyself: I am the Lord".

Leviticus 19:18