One on One Date with Mom

I took the kids that wanted to go with me to look at the store of some toys they were interested in. We do no have cable TV, so they do not see any commericals. I took pictures of the items they said they wanted. We talked about the items they wanted and hoped for.  I loved seeing the joy on their faces.  Afterwards, we went to my favorite frozen yogurt shop called Yogurt Kingdom. I enjoyed spending time with them and getting a good idea of what they wanted for Christmas.  When it comes to dessert, my kids tummies are always hungry and they struggle with a good serving size. Thank you Yogurt Kingdom, It was delicious! 💗

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. 

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!