Painful setbacks

Saturday was such a fun day! Lisa's gang came to visit. Hayden had friends over and we had our fun Nerf party. It was a great day! Pictures and fun blog post to come.

It is now early Monday morning or middle of the night Sunday night. I am so tired that thinking is difficult and comes with a struggle. The pain I have experienced in the past 36 hours is beyond words of expression. My body aches in a way it hasn't in months. Every part of my body is screeching with rebellion as to the pain and aches it is experiencing. 

As I sat completely covered on the step of Jodi's pool on Saturday, wearing a hat and sunglasses while sitting under an umbrella in the cool pool water, I was entirely sheltered from the sun and was cool from the cold water. The moment was heavenly. I was actually actively participating in life with my son, husband, sister, cousins and loved ones. I relished the joyous laughter, the giggling, the sitting and talking and watching the guys all take one another out with the Nerf guns. I was ecstatic that maybe I had found an activity that I could do with my family and feel like I was actively participating in living with them. I was cautious to try to not overdo it and the second that the sun felt to be effecting my body, I got out of the pool and moved in doors. I actually felt relatively okay while inside. Relief and joy and gratitude swept thru my body. I felt this huge weight come off my shoulders feeling like life was starting to come back into line and feel more normal. 

We talked for awhile on the couch after Thomas cooked up burgers. I enjoyed sitting and talking with Lisa, Jodi and Suzi. As I laid on Jodi's recliner, I felt exhaustion slipping in but enjoyed each moment of the time just talking and enjoying great company. 

Shortly thereafter, I left with Lisa's gang to head back home. As I sat on the couch, I felt the old familiar aches and pains starting to settle in. I tried pushing them away and hoped that a long nap would settle down the symptoms and my body would again return to a more peaceful state. 

However, a couple of hours later, when I awoke, the pain had elevated. The struggling for breath returned and the excruciating pain it took to just breathe and exist became more difficult. Luckily, the sheer exhaustion of my body took over and slumber came. I felt relief from the pain while my body slept. 

When I awoke early Sunday morning, I let out an audible cry of pain. Months have passed since that level of pain has encompassed my body. Each step felt as if I was walking on sharpened razor blades. Each breath felt as if I was trying to breathe pudding instead of air. My eyes flickered as I tried to fight off seizures. My head pulled me in and out of consciousness. Rough does not explain my day. 

The day continued in the same old familiar fashion that I had grown so accustomed to. I faithfully used my cold laser treatments, I took my anti seizure meds, I did all in my power to minimize the pain, extreme symptoms and frustrating seizures. It seemed that nothing I tried brought any relief. 

Tonight or early this morning, I sit on the couch trying to manage the pain and unsteadiness that I am feeling. My right eye is flickering and trying to fight off another seizure.

As I sit here, I am so grateful for the events that have transpired to help my body find relief. Sure, I am miserable today. I am hurting and the pain is almost more than I can bear. But, I know that relief will again come. It has become so much more tolerable over the past couple of months. 

I am grateful for the decreased seizures. I am grateful for the progress made. Someday, I will be able to do all the things I long to. I know there will come a time that spending an hour in the pool with those I love will not take me out for days.  I know that life will keep getting easier as I adapt and figure things out. I look forward to healing in the future but am so grateful for the healing that has already come. My gratitude is full tonight knowing that this setback is temporary. That my body will again climb back out of this hole and be able to at least function again from my couch. 

Maybe setbacks are good. They give perspective. They show progress. They help foster gratitude for what I have been blessed with instead of focusing on the long road ahead. Honestly, right now, I just long to be where I was a week ago. I know I will get there and then have the ability to again start improving and getting better. 

I am grateful for the perspective given to me this weekend. And, even with the excruciating pain I am experiencing at this moment, I would do it again. I would sacrifice my well being because of how much it meant to Hayden to have his mom at his party and that is truly what life is all about. Because soon the pain will decrease, the moments of seizures will be in the past, my breathing will settle and become more rhythmic but the memories made will last a lifetime. And that is what life is truly about. The little moments that connect together the bonds of love and help our families know that they matter above all else. 

Hopefully I gave my son that gift this weekend. He knows that I will do all in my power to make his heart's desires a reality. So often I cannot do that but this weekend, I was able to and that was worth every minute of the pain and miserableness that has followed. I showed my son and family that they truly matter most. They do. 

I am learning that there is always something to be grateful for. It feels so good to seek and find the good amidst the day to day living. My blessings are tremendous and I am truly grateful for all the progress that has been made. I will keep striving to overcome while being grateful for the healing already experienced. 

Meet Max

Hayden's lifelong dream came true this past weekend when we surprised him with his own chihuahua. He has been begging for his own little chihuahua since he was in kindergarten. I always said no way, no how, not happening. 

However, when I received a call that there was a trained chihuahua puppy that was potty trained, had shots, was obedience trained and was bred to be a therapy dog, for FREE, I had to rethink my position. When the news of this little puppy came in, I knew this little guy was the answer to many challenges we were facing. 

Too bad for the other family that they had paid a fortune for this little dog. Trained him to be a companion dog for their son and found out that another son was extremely allergic to him. They were willing for him to go to a good home for free. They even gave us all of his toys, kennel, leash, food and bowls. 

So last Friday night when Thomas got home from work, we told Hayden to put on shoes we were going to give him a surprise for how hard his has worked over the past year on helping out. (We also thought it would ease the blow of having to put Princess down due to cancer). On the way there we told him where we were going so he could enjoy the puppy while trying to see how they interacted. 

Immediately Hayden fell in love. It was if Max and Hayden were destined to be together. His face on the drive home says it all. He even had us stop at Petco on our way home so he could buy him his own new toy. 

Max and Hayden sleep in Hayden's room. Max curls up with Hayden and cuddles all night.  They play during the day. I knew Hayden would love him but what I didn't count on was how much I would love him. 

Wile Hayden does his own thing during the day, Max cuddles on the couch with me. While I have been so sick the past couple of days and confined to my bed, Max has cuddles and been my buddy, never leaving my side. I carry this two pound little puppy everywhere. He curls on my lap and is my shadow. 

Playtime and nighttime he is Hayden's dog and Hayden is his boy. Hayden has really stepped up and taken him out on a leash to go to the bathroom, taken him for many walks daily and feeds him and cleans up after him. Most of all, he is Hayden's dream puppy. Hayden is thrilled with the incredible dog that Max is. He loves training Max and teaching him new tricks.

I couldn't imagine loving a dog more. He has definitely won over my heart. Hayden's heart and Thomas' heart. He has warmed his way into our family in less than a short week. Welcome to the family, Max! You are a loved little pup!

Childhood Joys of Summer

Summer is in full swing. School has been out for two weeks. The summer Arizona heat is here and in full swing. Hayden is having a great summer making lasting memories. 

Hayden has become my partner at weekly doctor appointments. To bribe him for being good and having to be hauled to doctors for several hours, I let him pick where to grab lunch on the way home. We discovered Five Guys burgers and fries. Yummy food, I tell you. 

Hayden has loved being able to stay up later and spend time with his all time hero, his dad. They have played all types of board games, watched movies, played video games, worked hard cleaning up dog poop, learning how to do minor house repairs and have enjoyed reading their latest new series of books. 

Of course water fun in a necessity in the desert of the sun. Hayden joined forces with Brooklyn for a day of jumping on the trampoline with the sprinklers and water gun wars. 

We have loved that all of Jodi's kids have been around more. They are silly and fun and bring so much joy and laughter into our home. 

Hayden has loved me being at home this summer. He has loved that we only leave the house about twice a week for doctor appointments. Leave it to Hayden to find the good in my being down. He has told me every day how great it is that he gets to do fun art projects, draw, build, create and do experiments. Below is Hayden creating a robot out of recycled trash. He used egg cartons for feet, a nuts and bolts for facial features and a milk jug body. He is one creative and engineering minded boy. 

This is my boy in his full personality. He hates getting his picture taken. He can go from all smiley and fun to his mischievous face in no time flat. I love that he is so relaxed. I love his attitude about no video games at will but reading, creating, building, running, playing and experimenting are front and center of his summer. We are definitely enjoying our summer and wish time would slow down. We are trying to savor every moment and find as much joy and happiness that can be found. 

We have so many more wonderful days ahead. I love this boy of mine and I absolutely love and cherish each day I get to spend with him.  

Cupcake or computer?

My Dad took Jodi out to dinner for her birthday a couple of days ago. They ate dinner and sat and talked. They had a great time. Jodi said it was one of the funnest nights of her life.

At dinner, my dad wanted to do something nice for me. He told Jodi he had planned on going to Sprinkles and sending me home a cupcake to let him know that he was thinking of me. He then remembered Cupcakes for a Cure and figured that I got plenty of cupcakes. He thought about buying gelato but figured it would melt before she could get it to me. He asked Jodi if there was anything I needed and she couldn't think of anything.

He remembered that I am writing more and more so he told Jodi that they should go to Best Buy. They started out looking at keyboards for the Ipad. Things quickly went from a keyboard to a laptop. Then from an ordinary laptop to the laptop of all laptops.

They found a laptop with a keyboard that the screen is turned and it becomes a tablet. It is all touch screen. It is AMAZING!

So, Jodi called me on the phone and told me that her and dad had a great time and dinner. She asked if she could come show me what dad got her for her birthday. I said sure. I was excited to hear about how much fun she had.

She showed me this incredible laptop/tablet and we were so impressed. Hayden was oohing and awwwing over it. He was talking about all the cool features and cool gadgets. Hayden and Thomas were in awe with all that it did.

No one was more in awe, then when Jodi told me how much my dad loved me. How that he cares but can't fix this and it frustrates him. She then handed over the laptop/tablet and told me it was my very very early birthday present.

She relayed the story of the cupcake.

Cupcake or Computer?

That is so my dad. He never does anything half way. His philosophy is definitely go big or go home.

All he does is big and bold and over the top!

I am still in shock that this incredible laptop/tablet is mine. I have started writing on it and absolutely LOVE it! It makes writing so much easier. I can do it so much more often.

I am so thankful for this incredible Dad of mine. He is a good man with a huge heart. He loves me. He wants to make this illness as easy on me as possible. I am grateful for him and the great man that he is. He has been very caring and loving during this illness. I am very grateful. 

I love this sister of mine. She was happier for me than if it would have been for her. My dad apologized to her. He told her that she got dinner with him for her birthday and I got a laptop/tablet. It didn't quite seem fair. Jodi told him that it was one of the best nights of her life. She loved surprising me with such a great gift. How lucky am I to be surrounded by such amazing people that are more concerned with my happiness than their own?

This is right after Jodi told me that it was mine, not hers. I was in awe. The smile is evident to the love and joy that surrounded me and filled my heart and soul.

Thomas and Hayden love it, too! Hayden thought that is the coolest story ever. He couldn't believe that such a cool gadget is 'ours'.

I can honestly say that we love it! That beautiful and fun device has been explored and played with every single day.

How lucky am I to have such a generous and loving dad and sister? I am truly blessed!

Last Day of 5th Grade

Hayden is an official 6th grader. He said goodbye to his 5th grade class and is out for the summer break.

He keeps reminding me that he is now in 6th grade.

I think he feels very grown up.

I feel like that time is speeding at an out of control speed that will not slow down. It feels like someone hit the fast forward button and no matter how hard I try, time will not slow down to even a steady pace and rhythm.

My boy continues to grow up, change, learn, grow and get older.

As much as I want time to slow down. Let this age that I love linger. I know that Hayden is growing and loves all he is learning and experiencing.

Moving Hayden to Cambridge Academy school this year was a wonderful decision. I always question myself when I make changes and question if I am doing it right.

Looking back, this was definitely inspired and the best school for my boy this year. He had wonderful teachers. He made wonderful friends. He grew in ways that can not be explained.

Academically, Hayden accomplished over two complete years this year, with a three year improvement in reading and math. He has excelled at Cambridge. They teach "out of the box" learning and thinking. With my "out of the box" thinker, it has been a perfect match. 

Hayden has excelled in areas that he was already great at. He has conquered so many subjects and areas that were challenging. Most of all, he worked his hardest. His report card was all A's and B's. Most importantly, he had outstanding effort in every class and every area. He worked his hardest at all he did. He never did the bare minimum required but always went the extra mile. He has decided that learning is fun.

I am grateful for good teachers and a caring staff that took an interest in Hayden, saw his true potential and helped find him ways to learn and succeed.

Hayden definitely grew a lot this year. Not just at school but with all the events at home. He has learned to be a survivor. He has learned that prayer conquers fear. He has learned that hard work and extra effort pay off. He has experienced the sweet taste of success and he loves it.

He still misses his old school where he attended since Pre-K, but he has adapted well. He has made so many new friends. His teachers adore him. He is loved and cared about.

I am so proud of my boy. He has conquered, even in the hardest of situations. The life lessons he has learned this year will take him far in life. He has a great work ethic and gives his all. I couldn't ask for me. I love you Bubba and am so proud of who you are!

Brigham's Birthday- 7

Brigham turned 7 years old. Where in the world has time gone? I cannot believe how old he is. I love this boy with all of my heart. He is an amazing boy with so many amazing qualities.

Brigham is full of energy, great at sports, full of life, smart, energetic, loving, a cuddle bug, has a smile that melts my heart and loves treats. Most of all he loves his Aunt Jer, enjoys going on adventures with Uncle Thomas and loves playing legos and video games with Hayden. He brings more joy to our lives.

I will always remember the day that Jodi found out about Brigham. It was such a great day. Both of us were chosen by birth moms on the same day to get babies. Jodi and I were over the moon thrilled. We were going to raise babies at the same time. Life couldn't have been better. Life goes on and things happen. Our birth mom changed her mind. But, luckily for us, Brigham's didn't.

Jodi brought Brigham home in the middle of the night. I couldn't wait until the next morning to see him. I had to hold him as soon as possible. I held this 4 pound little bundle in my arms and he snuggled in. I was sold. He was so precious, so loving and so what I needed to heal my heart.

I found myself driving to Jodi's house several times a week, after work. I just wanted to sit on her couch and snuggle with this little precious baby. Brigham helped me overcome the loss that I felt of losing several babies that year to miscarriages and failed adoptions. I didn't have my own, but Jodi was willing to share her beautiful bundle of joy with me. Brigham's little spirit knew how much I needed him and he would snuggle and cuddle with me. I couldn't get enough of him.

To this day, Brigham has a way to touch my heart and bring my soul comfort and peace and joy. He still has a way of snuggling into me and my heart melts. What he doesn't know is that I would do anything in the world for him. He definitely holds a piece of my heart that is all his.

Happy Birthday, Brigham Buddy! I am so grateful for the gift of you in my life!

So, when on Sunday morning, I called to wish him a happy birthday and he lovingly and in his sweetest Brigham voice tells me there is plenty of time for me to bring his present over BEFORE church, we all hopped in the car and drove over to Jodi's. Like I said, I would do absolutely anything for this boy.

He had the gang come. But, I loved that he wanted his picture taken with Aunt Jer. I love you, Brigham! Always have. Always will.

Happy Birthday to my wonderful, incredible, knock them out of the park, adorable nephew, Brigham! I hope 7 is a wonderful year for you and you grow and learn and bring more and more joy and happiness into our lives.

My boys

With how much time I have had the privilege to spend with Jodi's boys, I consider all three of these, mine.

The day after Hayden got home from his field trip, I let him stay home from school. Why not? Less than a week left. They were only finishing up last minute assignments. Hayden was caught up. He was exhausted from no sleep for two nights with constantly going. Plus, I missed him.

Jodi had to run somewhere so she asked Hayden to babysit Talmage. He did a GREAT job! He played and played with Talmage. He made T man lunch. He watched movies with him. He even laid by him on my bed while I slept and rubbed Talmage's back so he would fall asleep.

Hayden is definitely growing up and is becoming more nurturing all the time. He loves Brigham and Talmage and is really trying to be a great example to them. I love that they are starting to look up to him and realizes he will be good to them.

With Hayden being an only child, I worry so much about him. I would give anything for him to have siblings. I did my best and it just didn't happen. One of the greatest gifts is that he has Jodi's kids. They are as close to siblings as he will ever know. I pray that they always include him and let him be apart of their lives as they grow. He loves them. So it touches my heart when I see them all so completely getting along and loving being together.

This one is definitely going on my wall. I love how sweet they are to one another. They had a ton of fun playing together.

When Brigham got home from school, he immediately started in on the fun, too. The boys wrestled, laughed, goofed off and had the best time.

I dreamed of the day when the fighting would be less then the getting along. We have finally hit that swing. They definitely play together and enjoy one another more than they fight. What a blessing. I love the smiles on their faces, even though they are blurred by the camera. I love all three of my boys.