Tuesday, November 27, 2012

Ryder’s Run: Montana Mountain 9-29-2012

The idea of Ryder’s Run was put into motion months before September. Jennifer Chaney, a former co-worker that I taught with, has an adorable son, Joseph, who went to two of the same in-home daycares with Ryder. After I quit teaching to care for Ryder, I began this blog and the news of Ryder’s unstable health spread. Jennifer and her husband Chad Chaney started following Ryder’s blog. This past June (2012) Chad contacted me with the idea of Ryder’s Run. He is the new president of Copperstate Fourwheelers (check out their web page www.copperstate4wheelers.com and on FB). After a phone call, Chad came to the hospital to visit Ryder and talk about his idea. There was kind of an awkward moment halfway through the visit because I had to “fire” the nurse and ask for someone else to re-dress Ryder’s Picc line. Chad and Ryder’s PT Beth, who was also visiting, were supportive of my actions although I felt awkward doing that with them there (glad I did though).

Chad and I kept in contact about all his amazing plans for the run. During that time Copperstate Fourwheelers had several meetings that I planned on attending to talk about Ryder, but it never worked out. Ryder spent over a month in the hospital and Les or I were with him around the clock. He then came home for a day or two (on two different occasions) before being readmitted to the hospital.
Our original plan for the money earned from Ryder’s Run was to purchase a wheelchair accessible vehicle. I was having a lot of issues with my back from picking up Ry and putting him into his car seat and getting him out again. He had a wheelchair (which was too heavy for me alone) so this vehicle was going to be a blessing to our daily lives and my back :). My sister and I researched vehicles and lift options. On July 25th however, our plans derailed after the first 911 call and ICU stay due to unrelenting seizures. Within a few weeks, it became more and more apparent that Ryder wouldn't be with us here on Earth much longer. The focus of the money shifted to paying for medical bills, end of life care and a glorious celebration of life.
Chad and Jennifer were always flexible with our crazy schedule and checked in on us often. While Chad was busy arranging the trail, designing stickers and fliers, finding sponsors, setting up a bank account in Ryder’s name and other countless duties I’m sure I wasn't aware of, his wife Jennifer was arranging for the silent auction and preparing baskets of the many donations coming in! (I know her mother was a huge help as well and am sure I left out so much that they did to get ready for this event!)
In the meantime, many friends were contacting my sister and me about wanting to participate, but they didn't have vehicles appropriate for the trail ride. Super Auntie jumped right in as always and began plans for a trail hike to accommodate those that wanted to join us. Jen also was a big part of spreading the word, collecting silent auction donations and updating Ryder’s blog.

While these awesome friends and family busied themselves with all the mundane details of this event, Ryder’s health deteriorated quickly, much more quickly than anyone imagined in fact. On August 22, 2012, at 9:07a.m., Ryder gained his angel wings.

While the devastation of Ryder’s loss, not only for our family, but the many, many lives he influenced set in, the plans for Ryder’s Run continued (I believe even in fuller force). Donations for the silent auction poured in and people we didn't know began reaching out to us and showing their support.
Jen (my sister) had memorial fliers printed, made a video montage, planned Ryder’s Celebration of Life and continued planning the hike portion of Ryder’s run, all while grieving the loss of her nephew and comforting our mom and me (a walking basket case at the time- and even still am sometimes to this day). I want to stop and give a shout out to Mike, Jen’s boyfriend, whom probably received many, many stress calls from Jen! Thanks for supporting and loving my sister!

Other friends jumped in to raise money as well.
Brianne (an 8yr old-now 9) inspired a benefit yard sale (raising over $700).

My friend Randee sparked the interest of her Zumba instructor, Lisa Kaleta, to host a zumba fundraising class and balloon release in Ryder’s memory with Spectrum Fitness and Wellness Center matching donations (raised $2000)

The Arizona Virtual Jeep Club sponsored a night at Native New Yorker where 10% of food profit when toward Ryder’s fund (raised over $300), my friend Regina hosted an Ava Rose Design party at her house--check out their website www.avarosedesigns.com (raised $128), Wooly Babes - Waldorf Dolls for a Cause (check them out on FB) held an on-line auction (raised $70) and my friends Sammy, Tanya and Tyra made bracelets and sold them to help out!

 Gosh, I hope I’m not forgetting anyone!!! I am still in awe of our wonderful, caring and supportive friends and family that have been so gracious and supportive.
September 29th was go day! All the hard work and planning on Chad’s part came together beautifully and even better than he planned (as he told me later). Dozens of people first met up at Desert Rat in Tempe to watch the slide show and participate in the silent auction and raffles. Chad presented a beautiful plaque to Les and I that we will cherish forever!

 It was then time to be on our way. Groups separated to head for the hike lead by my sister or the trail run lead by Chad.
Les, Noah, Cody (my nephew) and I drove in our truck to Montana Mountain. It was my first off-road adventure! When we got to the meeting site, I was overwhelmed (again) with the dozens of vehicles awaiting us that weren't able to come to Desert Rat. When the vehicles started along the trail in formation, I sat back and enjoyed the ride (on Dramamine since I get motion sickness!) It was just over a month after Ryder had passed away. I saw signs of him everywhere and I was taken aback by the beauty of nature and the people that were there in the moment, during that day for my little angel with the hugest spirit whom touched so many lives. Part way up the trail we all stopped and took in the scenery. While outside the truck, I could hear my friend, Wendy, laughing! I walked down the row of vehicles until I found her. She was excited to show me the back of her vehicle. As I walked around and saw the huge banner with Ryder’s name on it (designed by her daughter Tanya) I was amazed!

 It really is an indescribable feeling knowing I have people who care deeply for my family and go out of their way to show us they care! Later in the day people signed the banner and it was given to me days later- another memory to hold dear forever! As we continued on the trail I saw beautiful butterflies galore and a heart shaped cloud that just shouted to my heart of Ryder’s vibrant presence. ( I don't know why I can never turn pics around when I want to!)
Eventually this same heart shaped cloud grew wings and flew away....... (Do you ever look for signs or pictures in the sky? I've done this since I was little :)

Ahead of us, I saw some of Ryder’s sticker’s on the vehicles. (How cool would it be to see one as I drive down the road someday?!) Looking through the mirror, I saw vehicle after vehicle and knew the line went beyond my vision. We were about 1/4th of the way in the line of vehicles; I wonder how many were actually there? We stopped again and had lunch together. It was neat walking around and meeting so many new people. We heard stories of people participating after hearing about Ryder’s run at a bar and someone else saw a flier hanging at Bank of America! I chuckled to myself listening to an innocent conversation between a 6 and 8 year old in the back of our truck (talking about girls and never wanting to make babies—I’m  sure they had no clue of what they were saying or what it meant lol)
It was an amazing experience and a memorable day. Chad mentioned maybe doing an annual Ryder’s Run to support the cause—AWESOME!

After it was said and done, Ryder’s Run raised a little over $10,000! Yes, that’s what I wrote--$10,000!!!! So very amazing and helpful. We will be using the money for medical bills, pieces of remembrance jewelry (I already designed & bought mine)

and starting over…We are also on our way to building our new path in life and will soon be able to give even more to those in need.


On a last side note, I mentioned in a previous post about writing a Jekl/ Hyde post. Anger is part of grief unfortunately. Most of the time it’s irrational. It’s just feeling through the pain while attempting to misplace it instead of dealing with it- (its common—and I realize I feel this way at times). It changes daily so no reason to mention specifics other than—I do get angry at my situation sporadically because it just plain sucks that’s why. I don’t want to use this blog in anger. Ryder wouldn't like that either & I don’t want to see what signs he’d send to me:0) Sorry to those I've offended. Please take my words with a grain of salt knowing I love you and I NEED to figure out my path from here by myself…no advice needed or wanted. This by no means is intended to be rude or make you walk on egg shells with me. PLEASE speak to me about Ryder and don’t think it would upset me! I NEED to talk about him. I have also lashed out to undeserving loved ones—I’m sorry again. Hoping this stage of grief passes someday soon…..
“If you’re going through hell just keep going before the devil even knows your there…..”

Friday, November 16, 2012

Greys Anatomy:Cyclical Vomiting Syndrome (CVS)

My take after just watching Greys Anatomy: I'm CRUSHED and trying not to beat myself up over this. I'm going to try to make this into a lesson for others.... Ryder started throwing up May 3rd--continuously everyday a dozen times. May 2nd he had his first lumbar puncture. I thought it was associated to that. He would hold his head and I tried telling EVERY doctor he was having a headache. It continued for months until he passed away and he continued to hold his head. My baby was having migranes just as I suspected, but NO DOCTOR believed me or followed through!! It could have been a different outcome if he had meds to control his migranes. Dr. N suggested caffine the 1st time in the hospital and it worked---but that was only 1 dose and nothing was done after that :( Lessons Mito Mamas--1. TRUST & FOLLOW YOUR INSTINCTS`ALWAYS-you have nothing to lose by trusting your gut! 2. DO NOT have invasive procedures done--avoid them at all cost!! Don't put your kids under anesthesia if possible. It really affects the kids. Whole Genome sequencing will be available to ALL very soon (a blood test or swab!) Contact TGEN or read about it please!!

Tuesday, November 6, 2012

Let's help other families get answers, treatments & CURES NOW!!!!!!

Let's help other families get answers, treatments & CURES NOW!!!!!!


Monday, October 22, 2012

Can I please resign?

Was I that eager angel Lord, stepping up for the special job? To birth pure love and bare the sorrow that would too shortly unfolded?

Was I feeling strong enough to fulfill a purpose here? Did I want to spread the word? To bring your sons and daughters near and guide them to your arms?

Did I ask to bare the cross and open up other’s eyes? To show them how to carry on with you always by my side?

If I was that eager angel Lord that came here to fulfill this job, I’m not feeling strong anymore, even with your powerful love.

I wish to resign my Lord and have my baby back. I promise to fulfill this plan another way. It’s too much for my heart.

I can’t stop remembering or stopping the tears that flow. I can’t focus only on the good that my baby taught us so.

I felt his pain and wiped his tears, so many that did flow. I cradled him and held him close trying to protect him from the unknown.

He’s gone now Lord, back in Heaven with you, where I dearly long to be. I need him in my arms once more to mend my broken heart and think again clearly.

I feel you all along the way Lord. I pray each day for you to hold me and my family in your embrace. But as much as I love you Lord and want to do your will, I think I took too much on as that eager angel.

Can I please resign?

Wednesday, October 3, 2012

The Sock

The Sock

My new life is weird. I still don’t have a grasp on the daily routines. Everything is just so different and just plain odd. I don’t have a strict med schedule for Ryder (w/ 13+ meds 1-3x’s a day). I’m not dealing with feeding pumps, hours of therapy, doctors appointments, hospital stays, vomiting and tons of refills to order and fight with insurance about not paying for the necessities. I am not keeping constant records to follow Ry’s health and stay on top of illnesses. My brain doesn’t run thousands of miles a minute searching for answers to everything anymore. My old life died right along with Ryder.

As of yesterday, I am now a dark brunette with purple streaks in my hair! Lol -the old me wouldn’t have dyed my hair with purple, but I always wanted to! I LOVE it!!! I’m also meeting with a tattoo artist at the end of the month. For sure something the old me would never -ever even consider! I feel fearless now!! Not reckless, but fearless. What’s the worst that can happen to me now- I join Ryder in Heaven? Again, I’m not acting or living recklessly at all. For example, one of my biggest fears before was driving by water or high in the mountains on winding roads. It was an irrational fear, but I was always scared and imagined all possible accidents. Chad from Copperstate Fourwheelers held an awesome off-road run for Ryder. I had a BLAST and wasn’t scared in the slightest- not even once! The old me would have drugged myself with Dramamine so I wouldn’t have a panic attack. (Ryder’s Run is a whole separate blog post I’m working on). I also started cooking again—we all know how fearless that is for me (okay maybe unintentionally reckless also!)

After my first good night sleep, I actually woke up refreshed and happy. It was a great feeling. I woke up early, had some coffee and a 5 hour energy drink (big mistake, but something I used to do in nursing school daily!) I was in a cleaning mood so I threw on my headphones, grabbed the carpet cleaner and rocked out while shampooing the carpet (my favorite chore). It was fun dancing and singing and sucking up nasty carpet dirt. I was happy. And then—I wasn’t. I broke down bawling just like that. I turned off the machine, sat down and had a good 5 minute cry. After that I was back to cleaning and feeling good. Next chore was to clean the front room. I began sorting through the toys. I didn’t plan on getting rid of any toys, but even sorting through the toys made me nauseas. I thought I was going to vomit just putting Ry’s toys into different baskets. I decided to go outside and listen to the birds chirp and look at the newly planted tree in remembrance of Ryder’s life. It was peaceful and beautiful, which lead me to cry again. Even though peaceful is nice some times, my old life was not peaceful-ever. I am learning to just be at peace every once in awhile. The quiet is not peaceful for me yet, it’s just depressing.

I went back inside to rock out some more while doing laundry this time. I finished the dishes, cleaned the bathrooms and the house was finally looking good again. As I was putting the laundry away I noticed one white, dirty bottom stained, lone little sock. Ryder obviously wore that one a lot! He probably wore it outside while riding his bike around and around the patio table. It was most likely dirty because Les (of course-lol) didn’t put on his shoes that day! The tears poured again. What was I going to do with one sock? I can’t keep everything. I tossed the sock in the trash. My heart sank and that nauseous feeling came back. It was time to go pick up the boys from school so I grabbed my keys and left with a heavy heart and upset stomach. I picked up the kiddos and played a game with them when we got home, still feeling awful. I checked my email and facebook and read an apology message from another grieving Mama. She had made a comment about how she still had dirty socks in the bottom of her hamper after months of her child’s passing. She thought the message offended me since I threw the sock away. I immediately went and took the sock out of the trash. I felt instant relief. My heart wasn’t heavy anymore. I also didn’t feel weird anymore about keeping one single stained sock. I decided I WILL keep every little thing. I need to not rush myself. Maybe someday that little sock will find a new purpose, or end up back in the trash, but for now it is tucked safely away back in his drawer.

Thursday, September 20, 2012

Learning to navigate through a different life

Learning to navigate through a different life

I didn’t want this life, it sure isn’t what I planned or dreamed of, but it is my life and I will LIVE it. I will use my gifts and I will give of myself. I will give to my husband, my sons, family, friends, community and world what I was born to give.
What that means, I’m still discovering everyday! I love to teach, create, sew, paint, write, laugh, read, learn, comfort, explore and be around people, mostly kids ;)
I have lived for 4 weeks and 1 day without my baby. Four weeks and 1 day of crying, screaming, smiling, remembering, thinking and praying about where to go from here. I still don’t know for sure. I am finally able to make commitments…..small ones, but I’m doing it!
My first outing since family and friends have left after Ryder’s celebration was to the Clayton’s. I planned on going myself the day before, but couldn’t even manage to get out of bed except to pick up the boys that day. I felt horrible. I am not one to cancel plans. After talking to Tammy, we decided to plan a family get together the next day. It was later and Les would drive me, so I had extra encouragement to leave the house (and my bed). Tammy has 2 beautiful children with Leukodystrophy and 3 other sons that we adore. I really liked being there. I was comforted by the wheelchairs, feeding pump, and constant need from kids. I felt normal again. It felt like home!
My second time out was to our first softball game of the season. Les and I play on a co-ed team. I haven’t played for almost 2 years due to nursing school and caring for Ryder. I was excited all day. I even bought new cleats, instead of my duck-taped ones from the last tournament I played in! When we got to the field early to practice, one of our teammates asked”Where are your kids, don’t you have like a ton of them?” Ugh….I smiled and said “our sons are playing over there.” It ruined my night. It wasn’t her fault obviously, she had no idea. It just reminded me of my new reality and how I will be asked questions like do you have kids, where do you work, and where do you live…easy topics that most new people ask. I can’t answer them flat out honest though without a long story. “Yes, I have 3 boys, but one is in Heaven, I was a teacher for 12 years, then started nursing school, but quite half way through to care for my son, now I’m just trying to get through each hour..How about you, what do you do? And of course… we live with my Mom. We couldn’t afford our house because I quite working to stay with Ryder and medical bills pile up quickly!” I think those answers would be too much for most people don’t you agree! Sometimes, I feel like I’m not sharing Ry’s life with others if I don’t tell people honest answers to what they ask, even if it is just a “filler” question when they could care less about the answers. I just have to learn to answer them depending on where I am and who asks. Anyways (back on track), after that innocent question I was a grumpster. I did okay during the game, being my first time playing in so long. I did sprain my finger----running---though!!!! Seriously, only I could hurt my finger running! It wasn’t my fault though. The short stop ran right in front of me while I was running full speed to 3rd base. It hurt so badly and I wanted to cry. I knew if I cried I wouldn’t stop, so I kept playing. At the end of the game I ran into an old friend. It was awesome to see her!!! She knew though. She knew I was trying to be normal and I was out of bed attempting to live. I teared up partly because my finger/hand was throbbing and partly because she understood how hard it was for me to be participating in life, but I held it together until I got home at least.

Now, I’m just living everyday with reminders all the time. I tell myself to get out of bed, to brush my teeth, shower, pick up the boys and help them with homework. I’m making progress- cleaning the house some, making appointments, calling friends and even volunteered at The Breast Cancer Society today. Small steps, but I’m living! I see signs of Ryder a lot. I really love when others share their signs of Ryder’s presence with me also (sunsets, dragonflies, memories). Can you believe my sister saw a GOLD dragonfly when she was having a rough day (not yellow—GOLD)??!! I wrote in a post a few weeks ago about seeing a gold dragonfly!

Yes, for all those wondering, I am taking care of myself. I went to the doctor who prescribed ambien to help me sleep. I tried it twice and it doesn’t work for me. I’ll fall asleep, but wake up 6-7 times anyways. I’m reading a little and exercising some daily. I eat when Les makes food—nothing new! I signed up to do the color run 5K in January with my sister! I also registered to be a bone marrow donor. Like I mentioned earlier, I got out of the house to volunteer today and plan on getting involved with spreading mitochondrial disorders and Leukodystrophy awareness. I’ve been attempting to write, but really am not inspired like I used to be. I make it a point to play a game and spend time with the boys every day. And I signed us up for grief counseling through The New Song Center. I’ll keep on chugging along—and hopefully find my new purpose someday soon.

Saturday, September 8, 2012

Butterfly Wishes; The Perfect Celebration of an Amazing Life

When I felt Ryder's time with us on Earth was near the end I talked with my sister. I have the most amazing bond with my sister. She just gets me. We are very different, but yet so connected with each other, it's awesome! I told my sister my dream of what an end of life celebration for Ryder would be like. I wanted it at the Wright House (where Les and I got married); I wanted a butterfly release, dancing, colors, a montage and happy memories. I knew after Ryder passed I probably wouldn't be able to think straight enough to plan this dream celebration. However, the BEST SISTER in the world made sure it happened for me, our family and Ryder! She was suffering right along with me, but she made it all happen and so, so much more! What an amazing celebration we had!

September 5, 2012
Ryder's Celebration of Life. Ryder would have been 3 years old. He celebrated in Heaven this year. I'm sure he partied with us at the Wright House as well :) Jen made sure all of my dreams of the celebration came true...Wright House, butterflies, colors, montage and dancing. She also made it more memorable and awesome then I could have even imagined!!!! She added a face painter, balloon artist, magician (which turned out to be a little wacko--lol), balloon release, tons and tons and TONS of food, a super fun photo booth, beautiful, large photos of Ryder, a photographer and catering staff (volunteer students from Highland High school!!!) It was so, so, so FUN!!!!

We had HUNDREDS of people join us!!!! Family from Alaska and Ohio joined us. Most of our Arizona family (Uncles, Aunts, cousins and Greats of each, nieces, nephew), A very dear friend from Delaware flew out to be with me. Elementary school friends, high school friends (and a few of their Mom's/family),old roommates, Minder Binder and Jackson's on 3rd peeps, coworkers of Les' and former coworkers of mine (Ty's 1st grade teacher), former students, nursing school friends, Ryder's therapists, Leukodystrophy families and friends, long time family friends & neighbors, Grandma and Nana's friends, Auntie Jen's friends, the boys principal and Noah's K & current teacher, amazing Child Life specialists and of course Doctor Narayanan and his wife attended! There were so, so many people (many surprisingly unexpected guests) from all walks of our life that joined us to celebrate, laugh and cry with us. It was BEAUTIFUL and PERFECT!!!

Tyler and Noah wrote and spoke lovely memories of their brother. Les and I also gave our own memorials of our sweet angel. Chaplain Charlie gave a beautiful speech and Auntie Jen read the legend of the butterfly release. I will post all of our speeches soon for those who couldn't attend.

My talented friend Jocelynn (Wicked Good Cake Company--check it out!!), made the most spectacular 3 layer cake! Jen spent many, many, many hours (with help from Alicia) putting together a beautiful montage with the songs, Forever Young and Here Comes the Sun. She also put together hours of pictures that played inside. Our great friends/family) Mike (& of course Jen), Mike & Holly, Aunt Janet, Kristie and my Mom stayed to help clean up.

This PERFECT day came together in less than 2 weeks! Jen you ROCK, I love you and I appreciate you so very, very much. I'm sure I forgot to mention some of you that also helped, but THANKS from the bottom of my heart to everyone who made this day so special :)

There was a guest book (that fell apart--long annoying story) but it wasn't the final book. If you can please comment on one--or several of these pages I would LOVE to add them to the final copy, even if you have never met Ry or didn't attend the celebration(just leave it in a comment):
1. What Memories do you have of Ryder?
2. Write 1 word to describe Ryder.
3. What memories of Ryder make you smile?
4. What still makes you think of Ryder?
5. What lessons have you learned from Ryder?
6. What do you think Heave is like?
7. What do you think Ryder is doing in Heaven today?

Friday, August 31, 2012

Where will my life lead me now?

It is amusing to me how many off the wall, random comments I am getting from well intentional folks! Seriously, it kind of makes me giggle, which is a good thing right now! I’m not making fun of anyone or even upset in the slightest. It’s not an easy situation to be in as a supporter either. I have been in your shoes before, not knowing what to say or do for my friend who I love so much that just lost a child. I also find it funny that I am feeling the need to comfort everyone else and put them at ease around me. All in all, there is not a rule book to death and how to treat those grieving (well actually there is—another thing I find very amusing), but I hope that my friends will still treat me as me. I’m a tough cookie ya know!!!! I am still getting calls about Ryder’s services and appointments. Today, after I informed Ryder’s case manager of his passing, I took her completely by surprise. I adore this woman, immensely, but her immediate response was, “Oh, I hope you guys get better soon!” I am also getting the loving advice that I must take care of my other children now, I need to take care of myself, I need to get counseling and that luckily, I have other children to live for.” Yep, I received all those comments, from more than one person! Really though, I’m just reflecting and finding some humor out of a situation that isn’t humorous at all. It’s one of my ways of coping I guess.

The morning after Ryder passed away, Les and I went to the mortuary to make all the arrangements. There was a showcase room of caskets and urns. I hated being there. We looked through books and displays of memorabilia. Only one urn jumped out at Les and I. We also plan on having jewelry made for each of us in memory of Ryder (and also tattoos!!) I wrote an inscription for his urn. That was so hard. I love to write, but this was permanent and I needed it to be perfect. I usually just write what’s on my mind, not something well thought out and permanent! I’m very happy with what I came up with though.

Ryder Cash Hauer
September 5th, 2009-August 22nd, 2012
On the Field of Dreams, we’ll meet again
Where we’ll never have to part
We’ll play and dance in the raindrop colors,
And climb and jump on the clouds floating by
We’ll sing sweet songs with the band of angels
And cuddle and snuggle darling baby of mine
Until then little teacher, fly as high as you can go,
show us the things that we don't yet know
God will take over your daily tickles
So giggle sweet son and shed no more tears
For we will always feel you near

Later that night, Les wanted to have a potluck. 70+ people showed up during the evening with lots of food and love! It was something that Les and the boys needed. They needed to be surrounded by all that love. I on the other hand had a tough time. It was too soon for me. I had a few getaways with my sister and friend during the evening. I’m sorry if I didn’t spend much time with anyone, but that day was for Les and the boys. I needed more time. I put everything I could into getting dressed and smiling, excepting hugs and words of sorrow. I am one to grieve alone and sort out my own thoughts and feelings before opening up to others. Thanks to everyone that did come that day though. Don’t be offended by my absence at times that night.

My Mother-in-Law is someone I completely respect and look up to. She is such a strong, amazing and inspirational women. She raised 5 children of her own (one who had leukemia) and fostered/adopted 2 others with special needs. She has lived in the hospital and advocated for her kids many, many times. I really look up to her. A month or so ago I was talking to her about Ryder and how we were all dealing with his health complications. She told me that IF Ryder did pass away; we should take our family on a little get away so we could “recoup” as a family and be there for each other to grieve, laugh and share memories. That was the BEST advice we followed!
Les and I took the boys on a weeklong getaway. We started off in Flagstaff staying with Uncle Paul. We just love him to pieces and are glad he moved closer to us! Then we drove to California the next day. We enjoyed the beach, Universal Studios, Disneyland and California Adventures for the next several days that followed. We had planned to visit those places with the boys for Ryder’s Make-A-Wish trip and I didn’t want Tyler and Noah to feel that fun trip (along with their brother) was taken away from them. We had a very bonding experience. We played, laughed and cried together. We are all grieving in different ways. Nights seem to be the hardest for me. I have been crying myself to sleep most nights. Tyler sees different things he thinks Ryder would like and shares them with us. He is also trying to invent a machine that will bring Ryder back to life. Noah is less open with his emotions. But before each ride, Noah asked me to promise him that he or the rest of us wouldn’t die. It was very sad for me to know how much he worries we might die too.
I saw many signs of Ryder last week. I felt the wind blowing; I saw beautiful shapes in the clouds that I imagined were Ryder and his activities in Heaven. I saw a small gold dragonfly that I had to do a triple take to make sure it was real! We saw a gorgeous double rainbow and another rainbow on the drive home. I notice everything now that I missed before. There is sooo much beauty in the world! I love my new eyes (even though I despise the reason for them).

Now that we are home it is a bit harder. Actually, today sucked... a lot! I haven’t been able to get to sleep easily before 1-2am and I’ve been waking up every morning around 9:07, the time Ryder passed away. Today my sister came over and we folded beautiful remembrance notes for Ryder’s celebration of life. I made 2 photo books of Ryder’s dedication and wish day. I also started to clean up a bit. I had to throw away the lovely flowers we received last week from loved ones. I almost threw up. I had to lie down, even though they were only flowers. I also got the call that Ryder’s body would be cremated today. I really wanted to run down to the mortuary (what an ugly word) and hold my baby and bring him back home, maybe have him buried instead. Weird thought, but I panicked. I imagined his body being cremated. It’s so permanent. But then again death is too, right. I had hot flashes and panic attacks all day. My room brings me the most panic. Ryder slept in here with us. I get nervous with his things. I don’t want to wash his clothes and I don’t want anyone to touch his stuff until I’m ready. We have dozens of hand and foot prints we made and I can’t find a safe place for them I need to get some in a shadow box to save forever. It would be way too easy to make a shrine with many things about Ryder, which wouldn’t be good for us. I keep repeating the phrase “If you are depressed you are living in the past, if you are anxious you are living in the future and if you are at peace you are living in the present.” I am being gentle with myself. I have every right to cry and be sad, but I don’t want to let myself be overcome with these emotions, which I could imagine would be easy to do. It has only been one measly week without Ryder. Some moments, it seems like its been forever, other moments I think about how much longer I have to keep living before I see him again. I also get periods of peace when I can just “be.” I cry sporadically and often throughout the day, mostly at night and pray for the Lord to hold me. This calms me. I just need to remind myself to accept the Lord into my heart instead of dwell on my sadness.

People say losing a child is the most devastating thing a parent could ever go through. Oddly, I disagree. Watching my baby be so sick and frustrated about the skills he lost absolutely tore me apart. Holding him while he continuously threw up, had unrelenting seizures, seemed scared because he couldn’t see and wouldn’t respond to my pleading for him to make any sign of life—yes—those were the most devastating things I went through. My heart is throbbing for all the families watching their children suffer right now. There are so many of them.

I am getting so excited about Ryder’s celebration of life. It will be glorious for sure!!!! It is at the place where Les and I got married. My sister is making sure it is absolutely spectacular. There will be a butterfly release (like at our wedding), face painting, balloons, bubbles, dancing and some surprises in store for everyone!!!! Very special people in our lives will be flying out to attend, along with many treasured family and friends in the valley. Ryder’s blog has now had about 28,000 views!!!!! Our baby was special. He had a big purpose on Earth and accomplished it to the fullest. I am a very proud Mama!

Now….I will take some time to think about what direction my life is meant to continue. I’m not sure if I’ll continue nursing school, teach again, become a child life specialist, teach homebound kids or be a developmental specialist, open a school, write a book, become a hospice nurse, or maybe a marine biologist-lol!!! There are endless possibilities!!!! I’m alive and excited to experience EVERYTHING, while at the same time counting down the days until I can join my Ryder in Heaven one day. Until then, I promise I’ll LIVE to the fullest.

Thursday, August 23, 2012

I felt Ryder dying with all my senses.

I’m sure most people don’t think about the process of dying. Or you’ve heard phrases like dying peacefully in your sleep or death on impact or whatever the case may be. This wasn’t my experience on any account. I’m writing this particular post for myself, so I will always remember these last moments. This was my experience alone. I don’t mind letting you into my mind those days, so read if you wish. I’m sure they will be etched in my mind and heart forever, but just in case….. I felt Ryder dying with all my senses.

Of course the emotional aspect was involved, but I never realized how much I could possibly “see, feel, smell, hear, taste” and do in the process of my child dying. As I held Ryder for days, hours and moments before he passed, I experienced many senses at their fullest peak. This wasn’t true at first, until Tyler said “Mom, I can taste that smell on my tongue.” That hit me, hard, and I opened up all my senses to experience what Tyler was feeling.

Sight: I’d say I actually began to see signs of Ryder dying 3 days prior. I saw his skin become blotchy red in different areas of his body. I saw a bluish/purple vein more prevalent from the corner of his left side of his lips down to his chin, as my sister pointed out. I saw his G-tube output turn to a brownish color with floating specs (a GI bleed). As it became closer, I saw Ryder’s body turn different shades of yellow, ash and pale. I saw Ry’s body becoming dehydrated. His tongue stuck to the roof of his mouth. His eyes where crusted closed. His lips were tough and peeling. I saw familiar nurses, child life specialists, doctors, other families and volunteers roaming around the Ryan House. I saw bright colors in the rooms. I saw guitars, art projects, footprints, handprints, and courage beads. I also saw it rain 3 nights straight. I saw balloons sent to Ryder by those who loved him, toys and food (lots and lots of food- mostly sushi due to a slight mishap with the sashimi order by Jen...at least it wasn’t corn this time sis!lol). I watched Ryder’s chest rise and fall. Sometimes it was uneven and he had rippled skin on his left lower side.

Smell: Dough. Raw Pillsbury dough will always remind me of that day. That was actually a sweet smell that I loved. There was also the rancid, indescribable, yucky smell of death for a few days and the stinkiest breath EVER!! And of course—the food…. I don’t think family can get away from food when they are experiencing a loss.

Taste: As Tyler said, the smell (mostly the yucky one) intertwined and traveled up my nose and in my mouth landing on my tongue. It was just there. I just accepted it.

Hear: There were so many sounds. Ryder whimpered from time to time. I could hear every breath and the depth of them. I heard stomach rumples and even some toots (from Ryder and Les-ha-ha).I heard the meaning of different songs playing, myself singing to Ryder, and Les playing the guitar. I heard crying, rain, kisses, clocks, running water for his baths, and my boys making a ruckus in the halls. I heard the doctors trying to tell me what I didn’t want to hear. I heard over and over from everyone; I’m sorry, it’s not supposed to be like this, can I get you anything, “You should get in bed with him now,” and of course “CAN I GET YOU SOMETHING TO EAT?” The last several HOURS were especially hard to hear. It sounded like Ryder was drowning. Right there in our arms, he was drowning. I couldn’t do anything. No position I held him in would stop those awful sounds. He’d stop breathing for minutes. When I thought it was over, it started up again- many times over, for hours. It wasn’t the sound of a peaceful passing. It was my worst imaginable death- drowning. It was like Ryder was no longer with us, but wasn’t in Heaven yet either.

Feeling: heart beat changes, pulling and tightness in my heart up through my throat. Wondering; is he in pain, thirsty, starving, or dreaming and will this elephant ever get off my chest? I could feel his body weight laying on me. I felt his mid body warm/hot to the touch. His nose and feet were cold. I could feel the changes between rapid and slow heart beats. I could feel the rubberiness of his cheeks. I felt the water as I took his last baths with him and the wind as I rocked him outside during the storm. I felt emptiness, nothingness, and frozen in time. I felt his eyelashes, nose, ears, legs, tummy, lips, back, bootie, arms, head, hair, neck, skin and just him, everywhere. I want to remember how soft and beautiful every part of him is/was. I felt aches in my arms and body not wanting to change positions or go to the bathroom because I didn’t want to leave him. I didn’t want to move. I felt fluffy stuffed animals around us. I felt Les holding us and his heart breaking with mine. I felt Les’ protection for me and love for his family.

Doing: All I could do was hold Ryder so close to me, reassure him that he could go when he wanted to and that Mommy would be okay. I asked him to visit me in my dreams and show me signs that he was okay. I took baths with him and let him float. I sang to him, told him everything he meant to me and stared at him. Such a perfect body and soul. I rubbed his arms and legs, face and jaws. I put ointment on his lips and gave him water on a sponge which he sucked. I cried over him, covered him with a blanket, rocked him and kept a close vigil. I needed to be with him when he left us. I anticipated every breath. I even breathed with him- taking in as much air at the same depth and frequency Ryder did. It hurt. I was told Ryder couldn’t feel anything after all the seizure activity and medication he was given. I hope he couldn’t. I don’t know what to do now. I can’t stay in one place very long. I can’t sleep long. I don’t want to talk yet except to Les, the boys and my sister. I just need to be and feel what I’m feeling with no expectations or words. I need to just be. I love you all and feel your love very much so. I just need to take things in on my own time.


Wednesday, August 22, 2012

A Sweet Angel is Among Us

This morning at 9:00am Ryder received his wings. He is forever in our hearts, and we know he is playing in his field of dreams. 

The Hauer's would like to invite family and friends over to the house tomorrow for a pot luck. If you would like to make a dish and visit, please come over between 5-8pm. Send Jen a private email if you need the address. mullenjennifer@msn.com

A celebration of life will be held September 5th at the Wright House beginning 5pm until 9pm.

636 W University Dr
Mesa, Az 85201 

Thank you so much for surrounding us with your love and prayers.  

Much love to you all!  

Sunday, August 19, 2012

Dancing in the Rain and More Gifts from GOD

It’s amazing how God answers our questions and prayers when we are quiet and listen with an open heart. I think I so often talk to God about all my wants, needs and complaints without giving him a chance to reply. I close off and wallow in my own thoughts. I’m trying to listen and be at peace with God’s plan right now and it’s something I have to remind myself of and ask for His help every hour or so in this trying time. I’ve had several awesome experiences in my life where I felt God’s profound presence and love, like I was the only one in the world and He gave me all his attention, love and comfort. I can’t say I follow any particular religion. I don’t believe there are rules, rights or wrongs in any person’s faith. I can only follow my heart and understand my own path.

A few nights ago when we moved Ryder into the care of Hospice at the Ryan House, my family was extremely blessed with God’s presence. We all felt it and soaked it in. Ryder was sleeping peacefully. Les was in the family suite with Tyler and Noah and I was just staring at Ryder unable to sleep. It started drizzling. We’ve always loved the rain and often go out to watch it. After about 10 minutes of listening to the rain I decided to go see the boys in the family suite. They were already outside watching as it began to pour. In the spur of the moment I told everyone to put on their bathing suits. Even though Les thought I was crazy, he decided to humor me and we all did just that. It was so lifting to be able to run, scream and laugh in the pouring down rain with my boys, while knowing Ryder was in a peaceful sleep for the time being. We needed that time together and it was so special.

The next day we had a beautifully perfect Dedication for Ryder, Tyler and Noah. My high school friend Marsha brought us Holy Water from her trip to Lourdes (in France). It was so special that she gave that to us for Ryder! We had a small get together with my family, Mom, sister and Mike. Chaplain Charlie spoke lovely words and a photographer captured some wonderful moments that we will treasure always.

Yesterday was Ryder’s Wish Day!!! What a blast! Our Make-A-Wish team quickly planned a fabulous party in the Diamond Backs pool & stadium :) Originally, we planned to go to Florida, but with Ryder’s rapid regression, he is no longer able to travel. The team planned this party in merely 48 hours! A limo picked us up at The Ryan House and surprised us with AWESOME jerseys with Ryder’s name on the back and #16 (John McDonald- our favorite player who visited Ryder in the hospital). We got to tour the stadium, take family pictures and of course splash around in the pool. Ryder was kicking his legs and opened his eyes many times to see his loving family and friends. We were only able to invite a very few number of people due to pool capacity. We were so thankful our family and friends joined us on short notice to help celebrate with Ryder. Uncle Paul drove down from Flagstaff, Auntie Cass jumped on a plane from Chicago in a days notice ( xoxoxox), Ryder’s Aunts, Uncles, cousins, old babysitter, therapist, neurologist--Dr. N, longtime family friends and a few TREMENDOUS supporters of Ryder (and me!) came to celebrate. We had a small dance party, sang Happy Birthday and Take Me Out to the Ball Game, ate yummy food and cake and took many, many pictures! There was face painting and a man who made awesome balloon creations! We were all drained at the end of the day.

Update on Ryder: Ry sleeps the majority of the day. The most he seems to be awake is when he is in the water. He will kick his legs and splash some. He opens his eyes a little throughout the day. We have to slowly decrease his feeds since he is vomiting and he isn’t able to absorb much nutrient. His feeds are only at 30mL’s per hour throughout the day, but we stop it many times to give his body a break with hopes to stop the vomiting. All his meds are tricky to give as well do to the volume of them all. He gets hot on certain parts of his body and gets blotchy red. We put cold clothes to help rid the blotchiness, which helps so far. He is often on morphine when he is awake. When he is awake, and sometimes in his sleep, he begins to whimper and breath funny. His heart rate is usually very rapid now. Last night, after his party, he had a seizure lasting about 2 hours. It wasn’t as awful as the ones he’s had before, but my heart still sank and I couldn’t help but wonder if it would be the night. That is such an awful feeling. A sweet little boy passed away hours earlier where we are staying and Cass and I heard the painful mourning of his family. I could only hold Ryder, talk to him and pray it wasn’t his time too. My heart hurts sooooo very much and becomes tremendously heavy just at the thought; I can’t imagine what it will actually feel like. I’m glad the meds helped relax Ryder last night though.

Today was Auntie Cassidy’s last day with us and she fit in all the Ryder time she could get. This morning she played with Ryder while Les and I got some extra shut eye :) When I woke up, I got the best surprise! Ryder was having a WONDERFUL morning full of smiles and even some laughs!!!!!!!!! We haven’t seen that since his first big seizure several weeks ago. Auntie Cass sang Take Me Out to the Ball Game and was being silly. She believes the smiles and laughs were just for her (maybe they were…) but I like to think he was having fun memories from yesterday too! He has continued to give us smiles all day long :) I’m getting off to take him for a swim. Hope we have days...weeks...Maybe months of smiles and fun left?! The internet connection is terrible at the Ryan House. I will load pictures when I get a chance. xoxoxo

Saturday, August 11, 2012

"I am so sorry to tell you this news." Dr. Amato

This will not be a pleasant post to read. I am raw with emotion tonight as I update this blog. I am desperately trying to hold it together and be strong, but Ryder is dying. No more hope for a cure, no longer the fantasy that I'm exaggerating his condition, or dreams of watching Ryder progress through the years.
I don't feel like going into details to much, but the quick version is: It's been confirmed that Ryder has Alpers syndrome:" a serious, fatal mitochondrial disease." His brain cells are quickly dying off. He's losing body functions. He will lose all his senses. His stomach doesn't empty, his bladder and bowels don't function appropriately, he's losing vision, his heart rate is tachycardic (too high), his breathing is abnormal and has ceased altogether at times. Seizures are very complicated to control and often ongoing. He’s becoming spastic and ridged. He screams out and whimpers, even while sleeping. The doctor said it's not pain, but it seems like it to us. Ryder is dying. On our agenda ASAP: Get Ryder baptized/Early birthday party at the same time? (Thinking the Ryan House for both, but will ask tomorrow.) Rush-A-Wish (make-a wish foundation) Speak with case manager/hospice team on how to tell his brothers. (Thankfully they are at the Claytons this weekend when we got the news & can process it.) We want Ryder at home and/or the Ryan House (hospice) for comfort and end of life care with people we know and love in a comforting environment instead of the hospital. Tons of family photos (any professional or amateur photographers are more than appreciated at all times for unposed moments or planned. (Best to contact Jen or my Mom-Mary for where we are.) ...start plans for a celebration of life. We don't want a traditional funeral. We want a beautiful celebration with colors, music, memories-surrounded by people who loved and were touched by Ryder's life. This is our wish and hope, but when the time comes, it may be too much to plan. Ryder's fundraiser is coming up at the end of September. Our hope was to purchase a wheelchair accessible vehicle so I can take Ryder to the zoo, park and on memorable outings. It doesn't seem like this will be an option anymore. We most likely will use this money for funeral/end of life celebration. Can you believe I just had to write that? GOD please give us the strength for this. I want to go to bed--forever--and never wake up until my baby is healthy and running around driving me crazy like any 2 year old would be doing. But I know I have two other BEAUTIFUL boys to raise. I have a purpose here on Earth that I need to fill. Ryder has taught me more in his lifetime than I've learned in mine. I just wish I could have had a more important role and outlive my baby.... P.S. notes: Family and friends wishing to see Ryder before he leaves us, we are more than willing and grateful for your visits and support. Let us know when you'd like to come. Also, please be flexible as to how he is feeling that day and our family situation at that time. I will keep you informed to his baptism/birthday party day--but expect it to be very soon. I think our Make-A-Wish trip will be from August 20th-27th, but it is not confirmed. Please bare with our emotional rollercoaster at this time and know we love you and are grateful for your support, even if we can't write thank you's or comments on your post (we do read and appreciate them though).

Saturday, July 28, 2012

More TIME with my little teacher

More TIME with my little teacher
Now that I can breath and think clearly again, I’ll tell you about the worst day of my life.
A small back track to Tuesday first, when Ryder had a great day. We worked and played hard on Tuesday and I started to HOPE that he may be somewhat mobile and happy again after the lengthy hospital stay that he had. I knew recovery would take time, but our little man is determined and a fighter. I videoed a short glimpse of our day. Ryder was able to sit up on his own after several minutes of encouragement.  Les and I left Grandma to watch Ryder that night so we could go to Noah’s curriculum night and then out on a much needed date for yummy sushi. When we got home Ryder was asleep and nothing eventful happened. It was a great day!
5:30 a.m. Ryder’s feeding pump started going off. Les got up, stopped the pump and changed Ry’s diaper. He noticed Ry was awake, but not fussing. Hoping he would fall back asleep, he climbed back into bed.
5:45 a.m. we both sat up hearing Ryder breathing funny (he sleeps in a toddler bed in our room). Les brought him into our bed and handed him to me. His head flopped back, eyes wide open and breathing funny. I began talking to him, snapping and trying to get his attention—but nothing…eyes still wide open. I gave him to Les saying we needed to go to the ER. I ran and woke up my mom telling her to watch the other boys, something was wrong with Ryder and we were taking him to the hospital. She jumped out of bed and we both ran back to my room. I took Ryder back and started heading out the door. Les thought we would get to the hospital faster if we drove. Part way out of the door I stopped and ran back inside yelling to called 911 NOW!!!!! He was limp in my arms with diminished breathes and eyes wide open, without blinking since 5:45. Les called 911 and they instructed us to lay him flat on the floor. A fire truck, police car and ambulance soon arrived. Ryder was unresponsive and started convulsing on the left side of his body. I was beside myself and could not breathe. I literally didn’t breath and clenched down hard on my jaws watching him jerk and the EMT’s trying to stabilize him. They kept asking me questions, but I couldn’t answer. It was surreal. This wasn’t happening, he had a good day yesterday…what was happening!!! They got him in the ambulance and I had to ride up front while Les drove behind us. Thank God the boys slept through this all!
Driving in the ambulance, I listened to lots of commotion in the back, praying, praying, praying he was okay. I was kind of numb at the same time not believing this was really happening…he was sooo good yesterday. I looked over in the 6a.m. traffic on the 60 to see my sister!!!! Sissy…I’m right here, something’s wrong with Ryder and I NEED YOU!!!!!!  I pulled out my cell and called her with a busy signal. I text her. There was more noise and commotion in the back. After passing an accident and a long 40min. drive to PCH, Les was waiting as we arrived and rushed Ry into the ER. His whole body was convulsing now. Uncontrollably…..wildly.. Les and I were allowed into the ER room while staff started working on him. Nurses were asking us questions. I watched everyone as Les answered them. His body was convulsing, there was a lot of commotion and I couldn’t breathe as I clenched my jaws tight. 1, 2, 3 10, 11, 14…….no 16 people I counted in the room working on my baby. 16 people. I’ve been in an ER room many times for observation and education and I never saw 16 people in one room working on one little baby, my baby, before. I watched his heart rate at 204 and pulse ox at 86%. They couldn’t get it under control. He was already on full strength oxygen. ” We need to incubate him,” sign here…….Breathe I tell myself, I sign…this isn’t happening.
We were transferred to the ICU. Time was irrelevant now. I don’t know what time it is. Ry’s not conscious. A nurse is using the ambo bag to keep him breathing. He’s unconscious and sedated…heavily.
In the ICU room I sat next to him and held his hand. He kept squeezing my hand jerking his upper body. He was still seizing even with the heavy medication. I couldn’t help him, or comfort him. I was in a nightmare. I was panicked and numb in waves, clenching my jaw and reminding myself occasionally to take a breath.
Not sure if it was hours or days, I was lost in this moment. I didn’t think my baby would make it. I was numb, but couldn’t breathe. I wasn’t home last night, I didn’t see his eyes looking at me this morning, I didn’t hear him make a noise, he was happy yesterday, he was making progress, he didn’t respond to me, his eyes were wide open, he wouldn’t respond. What in the world was happening?? Did I push him too much to sit up yesterday? Did I do something wrong. I’m guilty and I can’t help my baby. My jaw hurts badly, my head hurts and I feel guilty.
Hours go by. We watch them put a PICC line in as Ryder continues to seize, although heavily medicated and restrained. They tried 1, 2, 3 sites over 45 minutes to start a PICC line. Ryder’s all bruised up now.
They wrap his head up with gauze after setting all the EEG leads up. He is incubated, his head is wrapped up, and he has an IV and a PICC line, several bandages from failed attempts of PICC’s and IV spots and is unconscious. My baby. This is not happening.
Everything was jumbled now and I didn’t know what was happening. He had an MRI; he was running a fever and couldn’t breathe on his own. The EEG showed constant right side seizing, with occasional left side as well. Was it just settling down from the prolonged seizure?
“ Dr. is this positively a seizure?”
“No, it’s not definitely a seizure.”
“Did, he have a stroke?”
“We don’t know yet. We need to wait for the MRI results.”
Waiting, praying, crying, praying, reminding myself to breath and PRAYING. The nurse announced that they wanted to do a lumbar puncture.
I didn’t want to do a lumbar puncture. I felt like the last LP was the cause of the past few month downward spiral. We called doctor N. We love Ry’s neurologist and trust him whole heartedly.
Meanwhile the nurse came in to prep for a LP.
“Why can’t we wait for the MRI results first before doing the LP?”
“The results are back and show he has a thrombus in his sinus cavity”
“WHAT? WHAT? WHAT does that mean, I don’t understand? Can the doctor come talk to us? I don’t understand?”
Why isn’t anyone telling us what is going on? I know what a thrombosis is…it’s bad. Ryder’s still not conscious and his EEG is still going crazy.
“Please have the doctor come talk to us”
“He’ll be in soon. He’s waiting on labs and the blood culture results so he can explain the next step and MRI at the same time.”
In the next several hours, Ryder had a lumbar puncture, his heart rate remained in the upper 160’s and he was started on a blood thinner medication.
My mom, sister and brother Billy were with us. It was a long, long day that never seemed to end. I held ice bags on my jaws and head. They hurt so badly. I still wasn’t thinking clearly and was in shock.
The next afternoon, after several attempts, Ryder began breathing on his own and was excubated. Eventually all the EEG leads were removed and so was his oxygen canula. He began coughing, mumbling noises and moved his limbs. What a relief.
Thursday through Saturday, Ryder become more and more agitated. He has started moving his limbs voluntarily and making noises. He’s struggling to open his eyes. He’s very floppy. I picked him up last night for the first time after being disconnected from everything. It was strange. He is dead weight in my arms. He can’t hold his head up on his own. Ry and I had a little dance party in his ICU room with Pandora playing for us. I spun him around and sang to him. We are very much alive in this moment. My baby is still with me. My teacher, my heart.
My lessons on this horrible night:
1.       Have FAITH!! I had so many talks with God that night. I had to remind myself over and over that the situation was out of my control. It’s HIS will, no matter how much I begged and promised and became upset, it was out of my hands. I placed it all in God’s hands that night and prayed for him to wrap his arms around Ryder, Les and I and give us strength. My prayer was answered.
2.       Appreciate what I have… Les is my rock and keeps my world spinning. He calms me and keeps me anchored in reality. When I start getting lost in the what ifs or feeling guilty, he brings me back so gently and easily. I love my Les! Also, no matter what our boy’s abilities are, I love them and we will give them every opportunity and pleasure in life that we can.
3.       Forgive and unload my heavy heart…. I’ve been sad and hurt since May from a long time friendship that has been strained. I kept close family and friends updated via facebook and text during this ordeal. As I checked the names to text, I hesitated on one. I felt this friend didn’t care anymore. She didn’t make an effort to reach out to me or visits Ry since his regression in May. I was hurt and mad at the same time. I decided to include her in my text because I know she loves Ry and I know she loves me as well. Life is so short and my friend has been in my life through so much.  Sometimes, people are placed in our lives to get us through tough times, some to be our anchors and lifelong friends, others to teach us valuable lessons and then we are meant to move on.

Thank you for all of your prayers, love and support my dear family and friends. We are grateful for more time with our Bubba!!!!!!!