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 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.

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).