"I'm Grateful" #3

Today I am grateful for the one hour today that all three of my children played together nicely.  They were cute together and all three were laughing.  Some days those moments are few and far between, but oh how lovely they are!

"I'm Grateful" #2

Air Conditioning
Today I am grateful for air conditioning.  I spent the afternoon with Tyler and his leadership team at their leadership retreat.  We went to an indoor miniature golf place and it was HOT!  The room where we miniature golfed was 95 degrees!  You would think that they would turn the air conditioning on when it is close to 100 degrees outside!  Despite the heat, we had a wonderful afternoon with fabulous people.  But it did feel good to get back into an air conditioned car. :)

"I'm Grateful" #1

Tyler has been struggling once again with his depression and anxiety.  Really struggling.  I was hoping that when school got out for the summer that the stress and worry would be gone and that he would perk up again, but no such luck.  He is not a happy boy right now.  We are trying everything that we possibly can to help him and so today he and I started a new challenge.  He started a blog and I am using my blog to document something that we are grateful for each day.  We will see how long we can go without missing a day.  I know that this won't "cure" him, but I am hoping that this will help him see past himself each day, even if it is just for a couple of minutes.  And so for my first "I'm grateful" post.

Summer Evenings
I love sitting outside on summer evenings.  It is has cooled down to a perfect temperature and I love visiting or playing with my family as the summer sun slowly sets to finish off another day.  I feel relaxed and content and I am in no hurry to rush inside to put the kids to bed.  The last few evenings have been lovely.  They are rejuvenating to my soul.

Baby Steps

I am continuing to learn to appreciate "baby steps" in my life and in the life of my children. Steps that are so insignificant to some, are gigantic steps for kids with special needs. Sometimes I forget and start to compare my children to other children and I get discouraged and feel sad. For instance, I was at a talent show last week and saw some teenagers and children who are incredibly talented. Several pianists and a violinist that were absolutely amazing! They are so young and play so beautifully and I briefly felt that I must be failing my children because they haven't been developing talents such as these. Of course I know better not to compare, but I admit that I allowed myself to feel that way for a little while. The difficult thing about "baby steps" is that they are small in the world's terms. People don't applaud and you don't receive worldly recognition for "baby steps". And yet, "baby steps" are often more awe inspiring and amazing than you would think!

Jared's life has been full of "baby steps". Sitting on his own, bum scooting, walking, taking his first bite of food, becoming potty trained. These steps weren't achieved when they are typically achieved and he had to overcome a lot to take these "baby steps". They weren't applauded by anyone but family and friends and the world didn't recognize his brilliance, but these steps were brilliant! They were amazing and miraculous! Jared, once again, took a giant "baby step" this past week. He is no longer drinking from a bottle! Hooray! It was actually easier than I thought it would be and he has surprised me with how well he has adjusted. It is huge for him! It is a lot of work to get all of the calories that he needs from an open cup. But he was ready and he hasn't asked for it since the first day!

I knew this was a huge step and my family did as well, but what amazed me was how incredibly supportive and encouraging Jared's teacher was about this "baby step". She knew that he could do it and kindly encouraged my to try it. She didn't judge, or criticize, but helped Jared and I both to be ready to take this step. She knew that I was planning on doing it last week and she wanted to keep up to date on his progress. When he had officially thrown the bottles into the garbage, we saved the last one for him to take to school and they had a Bye Bye Bottle party for him. This was no simple throw the bottle in the garbage and good job Jared. This was a party! He wore the special hat all day, they played games, they cheered for him when he threw away the last bottle, each of the kids took turns telling Jared how proud they were of him, they sang songs as they took the garbage sack containing that last bottle to the dumpster, they played with glow sticks and balloons and Jared came home with a giant bottle shaped balloon! His teacher even sent an email to each of the kids parent's explaining what they had celebrated and why and how big of "baby step" this was for Jared. She rallied around him and me and gave him the recognition that he deserved. Her email explaining the party brought me to tears because she truly saw and appreciated how gigantic this "baby step" was for my Jared and for me! She has taught me to not under appreciate the miracles that take place in my children's lives. They may not be what the world sees as accomplished, but the things that they have accomplished are just as miraculous and have taken just as much work as any concert violinist! Thank you Becky!

Lessons Learned in the Bathtub

Alyssa had just been discharged from the hospital following her surgeries and we were back at our room at the Ronald McDonald House.  She hadn't been able to bathe since before her surgeries and I knew that she would feel so much better if she could get in the tub.  She was still having a lot of seizures, and because her right side was still not moving well, she was absolutely terrified of getting in the tub.  She had been nervous about taking baths before her surgery and I would always sit next to her whenever she was in the tub, but this was different.  She was absolutely scared to death!  It broke my heart, once again, to know that the surgery had not been successful.  This was part of the reason why we had decided to try surgery.  I didn't want my child to always be afraid of as simple a thing as bathing!  And here we were, post surgery, and she was even more terrified!  I was so sad for her, but I still knew that I had to get her in the bathtub that night.  I ran the tub and then came to get her and she cried and screamed but I told her that I would not let go of her the entire time.  I promised that I would keep her safe.  We started with her feet.  I sat on the side of the tub and held her.  Slowly she allowed her legs to go in and then slowly she was in up to her stomach.  Still cradling her in my arms I slowly lowered the rest of her into the warm, cleansing water.  She resisted at first, still afraid of what could happen, but as she felt the warm water and began to trust that I would not let anything happen to her, she started to relax and a small, contended smile slowly spread on her face.  She had a brief seizure, but I was there holding her, keeping her safe and she continued to enjoy her well deserved bath.  She was so sweet after we got her out of the tub and thanked me over and over again for helping her.  I told her that if I could take her place, I would do it in a heart beat.  It hurt me so much to see her hurting.  How I wished that I could just take it all way, but I couldn't.  All that I can do is help her, comfort her, and hold her up when she can't hold herself up.

It wasn't until a few weeks after getting home that this experience resurfaced in my mind.  As I thought about this sacred experience between my daughter and I,  I realized that this is exactly what our Savior is doing for us.  He is there to hold us up when we can't hold ourselves up!  As we learn to trust him, we are able to relax and let the calming, cleansing waters of the gospel wash over us.  There are times in our lives when we are truly terrified of what we may be facing.  Times when we don't think that we can continue.  Times when we are lost.  But if we allow our Savior to hold us, we can overcome anything!  And the truest miracle of all, is that he knows exactly how we are feeling and what we are experiencing because he has felt it all!  He has experienced every pain and every sorrow that any of us has ever experienced and so he personally understands exactly what we are going through!  All that we are asked to do is to trust him.  To ask him for the help that he so desperately wants to give us.  That is the lesson that I learned in the bathtub as I held my sweet, brave, daughter.

So Behind

I am so behind on my poor, neglected blog.  I'm not sure why I haven't posted for so long.  I have had plenty to say, but I think that I was too tired to actually put things down in words.  I am hoping to do better now.  Spring is here, the sun is shining, green things are sprouting, and hopefully my ambition will return as well!

Life has been busy, as usual.  It has been a hard few months helping Alyssa recover from surgery.  It took a long time, but she is finally settling back in to the school routine.  She is still going a couple of hours late each day, but last week she didn't once refuse to go to school.  This is huge!  We have had so many tears and tantrums trying to get her back.  We finally ended up setting up an IEP for her because of her medical situation.  This allows her to be able to work in the special ed room in the afternoons when she is getting a little overwhelmed or tired and provides us with more flexibility in coming up with things that make her feel more comfortable and safe.  Her school has been really great at working with us to help her feel safe and comfortable.  Singing has really become therapeutic for her.  She loves to sing and has such a beautiful voice and it seems to help her stay calm and happy.  The office staff at school now look forward to her singing for them each morning.  She loves to practice what song she will be singing to them as we drive to school.  It has been good for her self esteem and the office staff love it!  Jeff wrote a beautiful song for our ward's road show last spring and he and Alyssa went to a recording studio a few weeks ago to record it.  They had so much fun and I love listening to them sing together!  I'll try and figure out how to add their song to the blog so that everyone can enjoy it!
Unfortunately, her seizures are still plentiful.  It appears that the surgery did not improve things much.  We have all been discouraged, but I am still glad that we tried.  We at least know that we have done everything that we possibly can do right now to help her.  She is still having at least 8 or more seizures a day.  Most of them are brief.  Less than 10 seconds.  However, they often hit so quickly that she falls if she is standing or sitting on a stool.  Several times a week she has one of her bigger seizures.  They last close to a minute and she is unable to use her right side for 15-30 minutes afterwards.  These are hard on all of us.  She always remains conscious so she can feel every shake and convulsion.  They are very painful and she is often in tears when they are finally over.  I can't imagine how hard it must be for her.  To have no control over your body as it postures and convulses.  To know that she can't do anything but wait for that time to pass.  It must be terrifying.  Oh how I wish that I could just take it away from her! 

She is now having an aura before her seizures.  This is new.  It is a feeling that she gets in her right arm.  It is good and bad.  It is good because she is better able to know that a seizure is coming, but bad because she can feel that way hours before the seizure comes.   Following a seizure, she feels good for a few minutes, but then the "seizury" feeling returns again.  Basically, she feels like she is going to be having a seizure all day.  If the feeling is strong, her arm feels funny enough that it becomes difficult for her to write, which makes school more challenging.  So, we are trying to come up with a plan on how to create as normal a life as we can with seizures.  I have to admit that I have been feeling a little trapped in our current situation.  Alyssa still sleeps with me, Jeff and I hardly have time to talk to each other alone, we are constantly monitoring Alyssa's safety but also trying to let her be a kid, keeping up with Jared's needs and therapy, and keeping up with Tyler's emotional needs and busy life.  It is crazy, but I know that we need to try to get out of survival mode.  I'm just not sure how to do that.  Somehow we'll figure it out.  I know that there are so many people who have more difficult challenges, but I told my mom the other day that even though I know that things could be worse, it doesn't take away the fact that things are hard right now.  But, I also know that we can do hard things and that we are given the strength we need to accomplish those things.  When I was 11 years old, my primary teacher had us memorize 1 Nephi 3:7.  

7 And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them.

I have never forgotten that scripture and the older I get, the more meaningful it has become.   Life on earth is not easy.  It is not meant to be easy.  We are here to learn and grow and we do this best when we are challenged.  But, we are not alone!  I know that if I do all that I can and never give up, that the Lord will be there to help me.  And so we continue on with faith.  Trying to teach our children that even though things are hard, they are strong enough to accomplish anything with the help of their Heavenly Father.

A Picture Summary of Cleveland

We are home and we made it home for Christmas! I am slow in updating. Once we got home it was Christmas and then I was just too tired to think about blogging. I've been in a bit of a haze and I'm sorry if I left people hanging. Alyssa is doing well and recovering more quickly than we thought possible. She just needed to get home. A couple of nights ago I was telling her how well she was doing and she said, "Home is the best medicine." How true is that! When you need to be in the hospital it is wonderful, but when it is time to leave, it is time to leave as I think that it starts to suck life from you when you have been there too long! I'm just grateful that Alyssa was able to leave when she did! As for the seizures, she was having so many still when we left Cleveland, however since getting home things have really improved. We started her on a third medication right before we came home that she takes before bed that seems to be helping. The ones that she has are much smaller and she seems to sleep through them which is great. So hopefully, between surgery and medication, we will be able to see continued improvement with controlling them. I sometimes think that I am becoming a pessimist because I try not to get my hopes up too much. We have just been disappointed so many times, but for now we will take the relative calmness that she is having and be grateful for the improvement that we are currently seeing! As for her right sided weakness. When we got home from Cleveland the night of the 23rd, she could barely walk with help and didn't use her right arm at all. One week later and she is walking, running, jumping, and her arm is getting stronger by the day. It has truly been another miracle! We have been amazed at how quickly she is recovering! So many blessings! Here is a picture summary of our month in Cleveland!

The first few days in Cleveland were nice. We went to the Children's Museum and Alyssa had fun climbing the "Sting Ray pads" as she called them, and playing at the water table. The walk back to the RMDH was a little cold because she was soaking wet, but it was worth it! :)

Alyssa LOVES crafts. We spent the first weekend before she got sick doing crafts. Our room needed a Christmas tree so she made this one. There were even limbs that stuck out so that she could hang ornaments. She is so creative! I would have never thought of that!

We also made this cute felt banner. It was a kit similar to the one that we made when we came to Cleveland the first time. It really brightened the room.

And then she got sick and did a lot of this. The poor girl was so tired and was having so many seizures. The yellow blanket was made and sent to her by her good friend Bethany. Bethany goes by the nickname "B". The blanket is yellow, white and black and has little flowers and bees sewn on to it. It was a "bee" blanket make with love by "B"! Alyssa LOVES it, and had it wrapped around her constantly!

Aunt Erika arrived the evening that Alyssa was released from the hospital after the nasty stomach bug she had. She was exactly what Alyssa and I needed. A breath of fresh air and sunshine! It was such a blessing to have her with us. She cheered us both up and got us out of the house a little bit.

We went to the Botanical Gardens and visited with Santa, looked at wonderful ginger bread houses and got to help release butterflies! If you look closely on Alyssa's hand, you can see a butterfly perched there. It was great fun!

And then we went "ice skating" on plastic ice? We were expecting real ice so we were a little disappointed, but at least we didn't fall!

Erika came prepared with all kinds of crafts. We decorated candles, made shrink-a-dinks, made a Christmas wreath for our room, made bottle cap necklaces, decorated little trinket tins and decorated a kerchief for Alyssa.

We then discovered that Alyssa gives the best arm tickles ever! She and Erika were enjoying there snuggle time. The little life saver looking things on Alyssa's head are called feducials. They were placed before her MRI the Friday before her surgery and were used as a type of GPS system for the surgeon. She had to keep them on all weekend. She LOVED that! Ha Ha

Erika left right after Alyssa's first surgery. It was so nice having her there with me. I am so very grateful for her. It was a blessing to have her with us and so good of her to fly out and leave her kids and hubby behind to be with us!

The night before Alyssa's first surgery, she and Erika were dancing to Christmas music and dressing up with Alyssa's hats and Erika's scarf. We had just finished watching The Nutcracker on TV and so they dressed up like Drosselmeyer with a turban and eye patch. I wish that I had taken pictures because it was so funny! A few days after Alyssa's fist surgery we decided that if she had an eye patch, she would look just like Drosselmeyer. So, we made an eye patch out of black construction paper and took a picture to send to Erika!

Right after her 2nd surgery. Jeff bought her this stuffed bunny while she was in surgery. She was very agitated in the PICU when we got to her and this bunny seemed to calm her right down. It was super soft and she loved to stroke it with her left had. She didn't let go of him for days following surgery. The bunny has been named, "Brainy", because she got it while she was having brain surgery!

They hate to have to put EEGs on right after surgery, but because she was having so many seizures, they needed to see what was going on so one day after surgery they had to place all 24 new leads on her poor little scalp. She was so patient and endured them with dignity beyond her age.

I was so happy when she felt well enough to have me snuggle with her again!

The first time sitting without someone holding her!

Walking with Daddy. She wasn't very happy but she'll do anything for her Daddy! (Especially if he bribes her!)

Her amazing battle wound! Can you believe the size of those incisions!

Alyssa loved having art therapy with Meridith. Meridith and Tom, the Child Life Specialist, were the only adults that she would talk to at the hospital. They each got at least a couple of words! :) She was decorating clear ornaments with paint here.

My beautiful, strong, brave, sweet, girl!

I wasn't able to update as much as I would have liked at the hospital because Alyssa was always using my computer. Thank goodness for Netflix. She watched her favorite show, Good Luck Charlie, over and over again. Luckily there are two seasons with about 30 episodes in each, but we watched them all, I don't know how many times, during our stay in Cleveland. If it helped her get through this difficult experience, than I was more than willing to oblige! Luckily I don't mind watching it either!

Alyssa and Dr. Lachwanni, her Epileptologist. He is so kind and sweet with Alyssa. On the day that she was being discharged he brought her a strawberry milkshake, and a smoothie for me. As he was leaving he gave me the biggest hug and said that we were in his prayers and that he wasn't giving up yet. Such a good man!

Alyssa and Dr. Bingaman, her neurosurgeon. He was is nice and kind as well and always made us laugh. He is a gifted surgeon and I never once doubted that he would do all that he could to help Alyssa.

Santa came to the hospital on the last day that we were there. All of the kids that could leave the floor were able to come down to the lobby to greet him. He arrived in an old fire truck and had about six police cars escorting him with lights and sirens. He could have honestly been the real santa. He was amazing! He had many elves accompanying him and he stopped and visited with each child and then loaded them up with gifts. Alyssa's face just lit up as he showed up! It was so fun to watch her watching him! Alyssa came away with three stuffed animals and three Barbie Dolls! She could barely hold them all! Each child that I saw there deserved each and every gift they received! They are all heros! I hadn't seen Alyssa this happy in weeks! Thank you Santa and his many elves!

At last the time had come! Discharge! I was a little worried that it wasn't going to happen because she started running a fever the night before, but all of her tests came back looking ok and the fever was gone by morning so we got the ok to get out of there! Alyssa was holding back the tears, she was so happy to be leaving! She didn't stop smiling the whole way out of the hospital! These are some of the nurses and staff that work on the epilepsy monitoring unit. They are all wonderful and we are so grateful for the care, concern, and love that they showed us! We left them with a star signed by us, thanking them all for treating Alyssa like a super star!

We spent one last night at the Ronald McDonald House before heading home the next day. So many wonderful people had sent cards and gifts to Alyssa and then that evening she received another gift bag full of gifts from a friend of Erika who lives in Cleveland. Alyssa was so surprised and excited to open up each gift and they were perfectly chosen for her. I then had to figure out how to get all of these gifts of hers home! I ended up buying an old suitcase from a member of the church in Cleveland to get everything home.

I never felt alone in Cleveland. I contacted the Bishop of the ward in Cleveland when we arrived and we had several members bring us the sacrament each Sunday and they and their families were so kind and brought us several meals and gifts and cards to Alyssa. They even made several airport runs for us throughout the month and helped Jeff give her a blessing. That is one of the blessings of the church. You have immediate family no matter where you are in the world! It was a great comfort to know that there were people willing to help at any time!

We flew home the afternoon of December 23rd and made it just in time for Christmas. Thank goodness! Alyssa took this picture out the window on our flight home. It was gray and cloudy on the ground, but beautiful and clear up above the clouds. It was rather symbolic of this experience and every experience in this life. Things can be gray and dreary, but with the love of our Heavenly Father, we can rise above it all and experience joy and light and leave the gray below. We were headed home!