Grey Matters

Getting our Christmas on!

2011-12-05T12:53:00.000-08:00

Getting our Christmas on is a weird way to restart my blog, but if I don't do it, it will never happen.

So remember this little guy? He isn't so little anymore. He is doing great. We consider him a true miracle. He is a piece of heaven on earth. He is still always happy, and never complains. In fact the only time he really cries is when his brothers and sister are getting scolded. Bless his heart. He hasn't been in the hospital for over a year! He still gets sick sometimes, but we are able to keep him home with all of the equipment he needs. Though that means more work for us, it is so much better to have him home! He is talking a lot! He is sweet, funny and precious and we all feel lucky to have him.

But enough about that let's get onto the important stuff, like shopping! Joe and I got our Christmas on this weekend, big time. Which for us means lots of Christmas shopping. Some people hate shopping, that would not be us. We LOVE Christmas shopping, especially for our kids. We went to Blickenstaff's, that toy store at the Riverwoods, and marveled at all the old-fashioned tin toys. We want them all because they are just so cool. We got some stocking stuffers, because everything else there is too darn expensive, then we saw these beauties.

Every once in a while we come across cheapy mood rings and of course we have to get them to make sure we know what mood we are in! Then we get the little paper that explains each color. Joe was "happy"all day. I was mostly "alert" and "active" , but I think the ring was a little off because I was happy too. It may have been because we found these air horns at the dollar store.

So of course we bought one and blew it out the window of our van at obnoxious teenagers, and sometimes couples running to their cars in the cold. So rude, but so funny. Then Joe came across this not so little gem at Ross.

He approached me cautiously, asking me to have an open mind. When I saw it, I knew he had to have it for his office. You see, he is obsessed with these Buddha heads.

We saw this one too. When I told him he should get both, (because when are we ever going to find giant white Buddha heads again) he almost cried. I don't know if he has ever been so excited about a present. At the check out he said he couldn't wait until after Christmas to put them in his office, I said "Why wait? It's not like I want to wrap two giant glass heads." He took them to work today.

The weekend ended with us drinking sparkling grape juice and watching our favorite Christmas movie "The Bishop's Wife". And while we wiped away a few tears, because the movie is that good, we made doll clothes. What? Yes doll clothes. Because doll clothes are so trampy and expensive! Why not make your own with leftover scraps of material. Like this:

Or this:
Then Joe made this fabulous jumpsuit out of a glove. Jumpsuits are all the rage. I would never wear one, but look at how Frankie pulls it off!

Plus you can put a funky skirt over it, and then you have a cowl neck sweater and leggings. What could be better?

And that is how we get our Christmas on! Merry Christmas!

south davis

2010-06-11T10:11:00.001-07:00

I have been so busy that I haven't had a chance to post anything in a long time. For those of you who don't know, Grey has been hospitalized every month since January. His immune system is fine, we have just been unlucky. The doctors say that it has been the worst RSV/flu season in a long time, and we have caught everything that has come along. For my other children it is just an occasional cough or sneeze, but for Grey it is very dangerous. His lungs are very weak and he can't cough on his own. Without coughing any respiratory illness can turn into pneumonia. This last visit was the longest. We were at Primary's for a week and 2 days. Finally the doctors told us about South Davis Community Hospital. It is a rehabilitation/ permanent living facility for the severely handicapped. At first I was devastated to think about sending my baby to a permanent living facility, if only for a few weeks, but we really had no choice. He was well enough to come home from Primary's, but he was still requiring so much care that there was no way Joe and I could take it on ourselves. He has fallen behind on physical therapy and eating by mouth since he has been in the hospital so much in the last 6 months, and South Davis has the means to work on physical therapy and eating while doing all of his treatments. Joe and I toured South Davis and decided it was the best option to get him back on his feet. The day he was transferred I was emotionally and physically exhausted after sleeping in a chair for a week and making this tough decision. It was late in the afternoon when I stepped out of the elevator into the pediatric unit. I had toured the facility the day before, but most of the children were hidden away, so to speak, in their rooms. This time they were all out in the hall. Although I knew this was a permanent living facility for severely handicapped children I wasn't prepared for what I saw. There were many teens in wheelchairs yelling, drooling and making repetitive motions. I had to walk through many of them to get to Grey's room. It was shocking and for some reason really scary to me. I had been alone, in the hospital for a week, I was tired and overwhelmed and I snapped. I began to cry uncontrollably and had to walk outside to my car. With nowhere else to go I got in my car and sobbed for about a half hour. I called Joe and expressed how I couldn't imagine leaving our baby there, but we had no choice. I composed myself as much as I could and walked in to kiss Grey goodnight. He was happy and none the wiser to the situation. The staff was friendly, and I knew I had to leave it in the Lord's hands. I kissed him and left to go to my friend Carri's house 10 minutes away. I consider it a huge blessing that I have a dear friend that lives that close to the hospital. I have know her my whole life and consider her family. Carri's mother was there waiting for me when I arrived with open arms. I have always felt like she is second mother, and I needed a mother at that point. We talked and she made me laugh, and I felt much better. The next day I went to visit Grey and was immediately hit by the smell of "rest home" when I entered the building. I felt sick to my stomach, but put on a brave face. When I walked into the pediatric unit it felt different than the night before. There were still children in the hall yelling and drooling, but it wasn't scary. The sun was pouring in through the window in Grey's room and he was talking to himself while watching "Blue's Clues" on the TV. He was excited to see me and began talking loudly saying "dada" and "mama" as if to tell me about his day. He was happy and content. I felt a world of relief. Since then he has been working hard to gain strength and he can sit up on his own now! The kids have come up to stay with me at Carri's, which they consider a mini vacation. Carri's friend got us passes to Lagoon, which is 5 minutes from the hospital. We had a wonderful time and I was still able to visit Grey that day. Though it has been crazy (excuse the pun) it has not been too bad. I am so grateful for Carri who has so willingly taken my family in, and made me feel so at home. I have come to love South Davis. Though I still don't like spending hours there, I at least know Grey is loved and taken care of. The staff is amazing. There is so much love for these children. They treat them like their own. There is a teenage girl who is mentally handicapped who sits by the nurses station everyday. The nurses chat and treat her like she is part of the conversation. The other day I noticed she had got a haircut and it was blown out all nice and sassy. I told her it looked good and she smiled. There is another girl that is probably the most physically handicapped I have ever seen. She only has one finger, but her fingernail is painted bright pink. They obviously love these children, and I am growing to love them too. I am learning their names and when I come I say "hi" to them. They stop yelling for a moment as if they are responding. Grey is everyone's favorite, of course. The nurses fight over who gets to take care of him. I know he is in the right place. I already see all the good that has come out of this experience, and I am so grateful for the opportunity to become stronger, I truly am. Grey will be coming home on the 19th of June and we will be whisking him, and the other kids, away on a much needed vacation to Disneyland. Thank you for all the prayers and support. We love you all so much!

notorious B I R D

2010-04-25T15:41:00.000-07:00

And now that I have a moment while Greyson is sleeping in the the hospital bed next to me and the ICU is relatively quiet, I will tell you the story if the notorious B I R D...

It's more than one bird actually, dare I say all birds, but I'm getting ahead of myself.

Anyone who knows Joe and I, knows we love birds. They are the only animal we have ever had as a pet, in fact the only animal we would ever even consider having as a pet.

Exhibit A:

We got our first bird right after we got married. Jubees, short for Jubilee, was like a child to us. She would sit on your shoulder and make kissy noises. We tried to get her to talk, but she was too stubborn. However I did record her talking once when she thought we weren't listening. When Miles was born she became insanely jealous. One day her jealousy over took her and she flew out the door. I didn't realize this for days and called for her over and over. I finally put it together after a while. I made missing posters trying to find her, but it was no use.

Exhibit B:

At Christmastime we make our house a cozy wonderland inside and out. We came up with what we considered a cleaver idea using pvc pipe wrapped with red and white rope lights to look like giant candy canes under the eaves of the roof. We enjoyed the look all season long. When it came time to take them down Joe found one to be more dirty than the rest. Looking inside the tube he couldn't see the other end so he hit it against the ground vigorously to get the dirt loose. 6, yes 6 dead birds fell out of the bottom. Loving birds the way we do this was a devastating shock.

Exhibit C:

We were thrilled to finally buy our first house, though it wasn't the newest of houses it was ours. After a month or two the dryer began to stink. Yes I know that is disgusting. Which is why I immediately called someone the clean out the dryer duct. After the nice man checked it out he gave me the bad news, Birds had made a nest so big in our dryer vent that it eroded away some of the pipe letting hot, moist, dryer air waft into the attic. Lovely.

Exhibit D:

For about a month now the boys have been waking up to scratchy squeaky sounds coming from the dryer ducts. A few days ago the dryer started acting sluggish again and the smell began to return. Those dang birds! (though I didn't use the word "dang" in my head). You won't get me this time!! I thought. I went outside and pulled the dryer tube out of the wall and began shaking it aggressively. A few measly twigs fell out. So I reached my hand inside and pulled out what could have easily filled a bucket full of twigs grass feather and all the makings of a nest. Bah! I was so mad I took some screen and screwed the opening all shut.

Exhibit E:

Directly after the final dryer stand off I was enjoying the springy day working in the yard. Suddenly I felt a wet "plop" on my nose. If you couldn't guess it was bird revenge in the only way a bird knows how, to poo on my face.

Why do you want to hate me so bad when all I have is love for you, you mean naughty birds. Ah well, they are smart little suckers aren't they.

sugar doll

2010-03-24T15:49:00.000-07:00

Thank you to my sister in law for giving me the "Sugar Doll Blogger Award". I don't really know what it means, but I'll take it! If it means that your blog is awesome then I have to give one to my sister Lilly, because her blog is hilarious and cute!! Thanks Beck!

the diagnosis

2010-02-18T08:18:00.000-08:00

Things have been very busy around here since Christmas. Greyson was admitted to the hospital on his birthday, January 4th, for pneumonia. While we were there his neurologist came to see him as she often does when he is admitted. She had the long awaited genetic test results. I thought that it would be another dead end, as usual, but this time there was big news. They had found a diagnosis. The condition is called Nemaline Myopathy. It is very rare, in fact there are only 143 cases of it in the world right now. The condition is typically genetic, and therefore the rest of our family will need to be tested for Nemaline Myopathy. There are different onsets of the condition. Infant, childhood, and adult. Childhood, and adult onset usually shorten the lifespan, by 10 years or so, and the symptoms are generally mild. Infant onset is the most severe, and is usually fatal. Of the 143 cases 27 are infant onset. Most of these babies have died. The infants usually die in the first year. However, if the baby can make it past that first 2 years of life, the symptoms typically diminish, and the child can live a fairly normal life, with a normal lifespan. It's incredible that this information came on his first birthday. The doctor told me that the reason he is still alive is because of all the preventative treatment that we have done for him. I know that all the prayers and faith of our friends and family have been the biggest factor in his survival. We have worked hard to get him this far, but we can't do everything. Luckily the Lord makes up for what we can't do, through the prayers and faith of loved ones. It is nothing short of miraculous the way the Lord works. If we had known the diagnosis from the beginning we would have given up. We would not have been aggressive with preventative treatment. We would have just made him comfortable assuming we would loose him in that first year. Because we did not know, we fought hard. There have only been 4 babies to survive this on record right now. He will be the 5th, if he survives. Through prayer and faith the Lord has lead us in the direction we need to go each day. Whether it be the hospital or treatments at home, it has worked. The doctors, and physical therapists are amazed at his progress. He is getting stronger each day. We continue to work with him, and he continues to fight this uphill battle. There has never been a more sweet and strong child as Greyson, in my eyes. He fights through numerous uncomfortable obstacles each day with no complaint. He is a wonderful, amazing child who teaches everyone who comes in contact with him the lessons of patience, perseverance, and love. We hope and pray for the best outcome. Your prayers are greatly appreciated. Thank you all for your service and love, we could not do this without you. We have learned so much from this sweet spirit already, and hope to be graced with his presence for many years to come.

Blessings

2009-12-28T13:44:00.000-08:00

when I'm worried and I can't sleep
I count my blessing instead of sheep
then I fall asleep counting my blessings

when my bank roll is getting small
I think of when I had none at all
and I fall asleep counting my blessings

I think about a nursery

and I picture curly heads

and one by one I count them
as they slumber in their beds

so if your worried and you can't sleep
count your blessings instead of sheep

and you'll fall asleep counting your blessings

This is one of my all time favorite songs. I don't know who wrote it, but it is on White Christmas, though it is not very Christmassy. It's good advice that really works!

Christmas Music

2009-12-16T09:59:00.000-08:00

I have to admit that we start listening to Christmas music the day after Halloween. Joe actually starts a little earlier than that at work, which his co-workers love I'm sure. So this is a list of our favorites and the occasions that fit them best.

Best music to start the season - Any Firestone classic record. (Back in the day Firestone tires would give away Christmas records with purchase of tires. Good luck finding them now.)

Best for decorating - White Christmas soundtrack ( In this case we just watch it, or Holiday Inn. If you haven't seen them you must!)

Best for cleaning - Charlie Brown Christmas (I'm not into jazz, but this is really soothing and motivating when you need to get the job done)

Best for baking - Christmas Night: Carols of the Nativity (When children are nestled all snug in their beds this music is beautiful to reflect and roll dough)

Best for watching snow fall - Mormon Tabernacle Choir (Need I say more?) Best for driving and looking at lights - Nat King Cole (Lulls children to sleep)

Best for doing after feast dishes as a group - Jackson Five (It makes the work go faster, plus it makes people dance)

Best for decorating cookies and gingerbread houses - Bing Crosby (Zippy and fun!)

Best for kids - Chipmunks, John Denver and the Muppet's, or any Rankin/Bass classic (Rankin/Bass refers to Frosty, Rodolph, Jack frost and all those other silly claymation TV classics)

Best for Christmas in the cabin - An Old English Christmas ( A long time family favorite)

Best for opening presents - Music box Christmas ( This music is magical. We only listened to it on Christmas morning when I was growing up and it made the occasion even more special.)

Best for Christmas parties - a mix of all of the above!

Check them out, and a Merry Christmas to all!

questionable material

2009-12-09T14:08:00.000-08:00

There are many things in life that I don't understand, but the one on my mind today is reading on the toilet. I don't get it. Why would you want to sit on a hole, exposing the most vulnerable part of your body to a drafty bowl of cold water, and have a relaxing read? You see the books and magazines on the back of toilets as if to say "stay a while". I don't want to stay a while. I want to get up, get out and get on with the day. If I did want to read I would curl up on the couch, or in bed. The toilet would be the last place that I would take a book. You would have "ring around the bum" if you were in there for more than five minutes. And don't even get me started on the cleanliness issue. When I see a cross word puzzle and a pen I nearly loose it. I have begun to see why nerds carry multiple pens in their pockets, because do you really know where other pens have been? No offense to potty readers. I still love you. I just won't be reading your potty books.

The Helmet

2009-11-24T08:07:00.001-08:00

So, I got this new helmet thing for my "misshapen" head that everyone keeps talking about. I, of course, think I look fine, but whatever. Mommy says I need to wear it 23 hours a day! I'm like "Are you kidding me? What will my girl cousins think? And right during the holidays when there will be pictures galore!" But as most things in my life I take it in stride, and wear it like a good little boy without any complaints, because I'm cool like that.

HEY! I said no pictures!

Well, OK maybe one.

I do look kind of cute, huh.

Then Mommy pimped my helmet and now I'm stylin'. Oh, and by the way I am eating in this picture. That's right real food. I think it was squash that day, a family favorite. It's just alright for me.

Are you kidding me with this? Who can sleep this way? Helmet and bi-pap mask? But actually the helmet makes my mask fit more comfortably, and I usually sleep all the way through the night with it. I"ll take the perks where I can get them.

Everybody needs a bosom for a pillow.

Jewelry Open House

2009-11-20T09:13:00.001-08:00

I am having a Jewelry Open House tomorrow! Come find great gifts at a great price for a great cause! All proceeds go towards Greyson's medical bills. Necklaces, bracelets, earrings, hair clips, pacifier chains, etc. Most items under $7!

And now some pictures with my terrible camera!

There is something for everyone, and everyone is welcome!
See you there!

Date: Saturday, Nov. 21st
Time: 11:00am-2:00pm
Place: Brown Residence (call for info if needed)
Questions? 801 - 221 - 4605

waddled

2009-11-18T08:58:00.000-08:00

We decorated for Christmas the other night, which consists mostly of Joe doing all the work while I sit on the couch and watch "White Christmas". I do help a little, but it is Joe's favorite thing in all the world to do. He looks forward to this all year, so I sit back and let him do his magic.

The tree. Our camera is really bad so you can't really grasp how beautiful it is. Just trust me.

Mila insisted on helping with the "socks". (wow we really need a new camera)

Then she made me take this picture down through the tree. Pretty creative. Classic Mila face.

The boys wanted to be "waddled" in blankets as they drank hot chocolate and watched "How the Grinch Stole Christmas".

And so we "waddled" them.

Grey watched from the couch, contented as always.

The kids wanted to help. But after some minor destruction, chaos, and fits...

this is all we let them do.

Mila + Me + Walmart bathroom = HILARIOUS

2009-11-16T10:51:00.000-08:00

Mila (on toilet) "This is going to be ugly."

Me "Bhahahahahaha!"

(the picture was probably not the best choice, fingers in mouth and all)

not so good news

2009-11-16T08:08:00.000-08:00

A midwife stopped me in the hall at my last check-up a couple of months ago. "I've been thinking about your son and I came upon this research about Antiphospholipid Syndrome." "Do what, now?" I thought. "It's a coagulated blood condition in mothers that can effect the baby, and cause birth defects, because the blood is too 'sticky' to give the baby the nutrients and oxygen it needs in-utero." I thought back to my umbilical cord. It was short and skinny when I delivered Grey, and I have been diagnosed with coagulated blood. "Hmm, I really need to look into that, thank you." I said a bit shocked.

A few days ago I saw my neurologist. I guess I should mention at this point that undiagnosed diseases run in the family. I have been searching for an answer to my extreme fatigue and dizzy spells for 15 years now. Most of my doctors have given up, and I am now taking a medication that they give soldiers and doctors that need to stay up for days at a time. I take this medication everyday just to stay awake, and I fall asleep just fine every night. It was a routine check-up, that I thought would be quick and painless. The doctor asked "How are your symptoms now?" I replied "They are OK, I guess. I had one of my dizzy spells last week and felt pain behind my eye with it." "Explain those dizzy spells to me again." She said. I had explained them to her so many times before that I rattled off the usual speech. "It starts at the top of my head, tingly, I can't move or talk, but I am concious...blah, blah, blah." "That is a classic description of Complex Partial Seizures." Ummm...WHAT?" I responded. "Yes" she said, "that is what you have. Seizures." I was, again, stunned. (I seem to be stunned a lot these days. I guess this type of situation is just... stunning.) "We need to get you on some medication because every time you have a seizure it is like a fire in your brain, killing brain cells." "That explains a lot." I thought. She scheduled more tests, as I sat thinking. I remembered what the midwife has said and asked, "Do you think I have Antiphospholipid Syndrome?" She said, "Let me read your chart again." She scrolled down the plethora of blood tests and her eyes lit up for a moment "Yes, I believe you do." At this point I choked back the tears and asked "So, do you think my condition has anything to do with Greyson's condition?" She hesitated for a moment and said "No, probably not. You'll have to ask his doctor." His doctor? His doctor is a neurologist. I felt like she knew it did effect him, but didn't want to tell me, or didn't feel it was her place. I finished up as quickly as possible, and left.

I drove home in tears. When I walked in the door Joe asked what was wrong. I told him the whole story. I retold the frustration of trying to get a diagnosis for myself before I got pregnant with Grey, so that the baby would not be effected by my condition, whatever it was. I was so angry that I had a diagnosis before I got pregnant, that was somehow overlooked. I wasn't warned, or prepared. He told me "Greyson is who he is, no matter if it came from you or not. We know he is special. We've known that all along. He might not be with us for very long, but that is not your fault. This is Heavenly Father's plan for him, and us." I knew he was right, and I agreed, silently. The pain and frustration didn't leave right away. I tried to keep my mind off of it. We watched an episode of "Grey's Anatomy", BIG MISTAKE. In the episode a 10 year old boy dies after beating the odds for years, and a baby is born with severe complications. BLAH. I cried and cried. I picked up Grey and held him tight. He patted my arm as if to say "It's OK, Mommy." Which of course made me cry more. I wish this story had a happy ending. As the days go by the pain becomes less, and I am truly happy for the time I have to spend with him. I am also grateful for wonderful friends and family, that support and love me.

Next time I'll be funny and happy, I promise.

the photogenic award goes to...

2009-11-10T09:21:00.000-08:00

I have four beautiful children, I will be the first to admit it, but you would never know from these pictures.

Exhibit A:

evil, balding gnome in princess disguise

Exhibit B:

less than impressed Robot with casual Thomas and irritated Snow White

Exhibit C:

freaky bald fairy, with glued on buns, that stole someone's essence

Exhibit D: who makes a face like this when you say "cheese"? My boys

Exhibit E:
ragamuffin troll doll

Exhibit F:
greasy monkey

Exhibit G:don't ask

Exhibit H:

homeless child with missing upper lip

Exhibit I:

I said "smile" not "close your eyes"

Exhibit J:

now that's just sad, he was happy here, I promise

Now after reassessment I realize the problem here is the photographer, mostly.

and after all that I will now post a good one...

is that the best I have? Well yes, for now, but there will be better ones coming soon...stay tuned

To: Arrested Development

2009-11-04T14:23:00.000-08:00

My Dearest Arrested Development,

I need to thank you for getting me through those hopeless, dark nights in the hospital when I had Grey. Joe was inspired to get me an ipod that Christmas and load on it all of your episodes, a treat I had never tasted before, and oh how sweet you are! I have watched you over and over since then, something I have never done with other shows, you should feel special. Why there are only three seasons of you I will never know, this is a tragedy. But I am a faithful fan, for so many reasons. You truly are the best show ever.

Love, Cha

a shout out

2009-11-03T08:33:00.000-08:00

So, I have to give credit where credit is due, one of my many motto's. This is to a friend of a friend literally, Jayna Haws, designer of my beautiful blog. I have been wanting to start a blog for some time now but being a Internet dinosaur knew nothing of that process, so never did anything about it. A couple of months ago she, and my lovely sister Lilly, surprised me with this blog, all ready to go. Of course it has taken me until now to actually have a spare second to write anything, but I truly appreciate it. They nailed it with the design, and the quote is perfect because I make jewelry as a hobby. Check out friend of a friend if you want an awesome blog! (It's the cutest out there.)

Thanks again, Girls!

Grey Matters

2009-11-02T09:31:00.000-08:00

I put down the needle and thread and closed my eyes breathing slowly through my nose. I shook my head and thought "yep, this is deffinitely it." No matter how much nesting you do, it is never enough. The last baby blanket would have to wait. I went up stairs to tell Joe. "Two weeks early?" he said to me, the look on my face answered his question. "You better get that car seat out of the garage and clean it up, quick." Five minutes later he came to me with a "sorry about this" look on his face. "Uh...the car seat has been chewed on by mice." Living by orchards you can't avoid mice. "Just forget it." I said. Moments later his mom showed up, sleepy, it was about 1:00am. We were off. We stopped by the red box to get some DVDs for the hospital. Joe stood in the freezing wind waiting for the DVDs, cold but excited. I watched him shiver full of love and anticipation, with no idea what we were about to embark on.

Once the doctor and midwife arrived we had decided to try to turn the baby, he was breech. As they did the version ( a procedure in which the doctor physically turns the baby by pushing on the mother's stomach) the look on Joe's face told me that this was much more invasive than we had thought, luckily I already had an epidural. The baby tolerated it well at first, then his heart rate completely disappeared. That's when everything went into slow motion. It was just like a T.V. show with people yelling and running. My bed was barrelling down the hall and tears were streaming down my face. I just repeated over and over "please don't die." Joe was getting dressed and I was alone. The midwife kissed my forehead. Seconds later Joe was at my head and the c-section had begun. "Am I supposed to feel this?" I said through uncontrollable shaking. The anesthesiologist, obviously panicked, inserted a large syringe into the IV. The sharp, dull pain was still there, but the shaking was so all consuming that I didn't notice. Soon we heard a faint, scratchy cry and my fears fled away. I was completely relieved. Joe said through tears "WOW, he has a ton of hair!" I thought "uh-huh, all of our kids have a lot of hair", then they put the baby next to my face. He looked ethnic. I mean TONS of BLACK hair. Shocked, I smiled, I think. I smiled inside at least. They whisked him away and I sighed with relief. After what seemed like hours they finally rolled me back into the delivery room. It was about 5:00 in the morning at that point. We groggily called family, who didn't believe us, but knew we would never get up that early to play a practical joke, so congratulated us with hoarse well wishes. At that point all was well, and we thought that was how it would stay.
I laid in my recovery room in and out of sleep when Joe entered with the video camera looking pensive. "How is he?" I said, "He's fine, he's fine. But there are a few issues." he said. "Issues?" I asked. "Well, his hands are turned out kind of funny to the side. And his left foot is turned out too." I felt a wave of sadness rush down my body. I pictured him in 1st grade being teased, limping around the school yard. I began to cry uncontrollably. That was the point I knew I had a special needs child. The loss of the perfect child I had imagined felt like a death, at first. Surprisingly, it didn't take more than a few minutes to accept that fact, and be OK with it. Throughout the next few hours Joe gave me updates about the baby. The nurses were noticing other strange things, but the most prominent was the floppiness, or muscle weakness. A few hours later the pediatrician came in looking solemn. "So," he said "there are some things that lead me to believe that there is some sort of syndrome or disease in your son. We need to run some tests, it could be Prader Willi Syndrome, but I think it is Spinal Muscular Atrophy." "OK, what is that?" we asked. "Well, it's a degenerative muscle disease, that causes this severe muscle weakness that we are seeing." he answered, "And what is Prader Willi?" we asked, "It's a disease where the child has turned out hands and feet, severe weakness, and extreme obesity because they don't have the chemical that tells your body that you are full." We sat there stunned, but we had already accepted that he was going to be special, so we weren't completely devastated, yet.
The next evening we sat watching a stupid flick trying to keep our minds off things. The pediatrician came in and told us he had run the tests and we would have to wait a couple weeks for the results. "Do you have any questions?" he asked, and I asked the question that would change everything. "What is the life expectancy for kids with this disease?" Looking uncomfortable he answered "Well, because of the degenerative nature of the disease the life expectancy is about 6 months to 2 years." I felt the blood rush out of my face and tears welling up in my eyes. The doctor was also welling up and left the room abruptly. I completely lost it. I said "I can't do this!" over and over. Joe held me and cried silently. Joe called the bishop for a blessing, he came right away. He counseled us, talking about Abraham and Issac. And I remember thinking "except that Abraham got to keep his son, I don't" We finally drifted to sleep with the lights on, watching mindless, funny shows on our ipods.

The next morning I woke feeling dead inside. I had ordered everything on the breakfast menu so Joe could eat too. We had a little chuckle about the enormous pile of food and what a pig they must have thought I was, but that was short lived. I said " I don't want to take a shower, what's the point." Joe said "You know you always feel better after you get ready." And for some reason that really struck a cord with me. I just knew that I had to keep going right then, or I would somehow stop forever. So I did, and he was right, I felt better.

That day I held him for the first time. I sat in a rocking chair in the level 2 nursery as Clair de Lune played softly. I sobbed as I looked at his sweet, beautiful face. I got this strong impression that he was special, almost like he was too good for this world. I suddenly felt really privileged to be his mother, and confused that such a special spirit would be sent to me.

We seemed to settle into the news astonishingly well over the next few days. The spirit took over, and suddenly we were better people. We loved each other a little more, we loved our other kids a little more, we loved everyone a little more. There were many visits from family that helped keep our mind off the ticking time. There was actually a lot of laughter and tender mercies, including an ongoing joke about Engine Joe and his side kick Prader Willi, no offense to those who have Prader Willi syndrome.

Telling the kids was scary. We put it off for many days, and finally decided it was time. We gathered the little ones on my hospital bed, Miles 9, Simon 5, and Mila 3. We explained the the baby was special, too special to be here for very long, that Heavenly Father needed him to come back soon. Mila didn't get it, Miles was somber, and Simon teared up a little, he is the most tender-hearted of them all, and loves babies. Overall they took it well. They understood. They seem to have a better understanding than most adults.

The day came for us to return home. He only had to be in the hospital for a week and we stayed there with him the whole time. As we drove home Joe said "Not exactly how we pictured it, huh." I cried and nodded. We brought him into the house and he brought with him a sweet, special spirit that people always comment on when they enter our home. We felt that this was going to be a short, but wonderful journey.

A few days later the doctor called with the test results. I knew it was SMA (Spinal Muscular Atrophy). The doctor said "The results came back negative." I was stunned into silence for a moment. "Negative? Are you sure?" I said finally. "Yes, I am as surprised as you." He said. I called Joe immediately, his reaction was the same, stunned silence. We called everyone we knew over the next few days to pass along the good news. There were tears of joy all over the place.

"Where do we go from here?" I asked the doctor at the next appointment. "Primary Children's" was his response. Oh, Primary's, how I've come to see you as a second home. The baby was set up with Neurologists, a team of Genetic doctors, sleep doctors, speech therapists, physical therapists, occupational therapists and the list goes on. He has had many, many tests. And all of them have come back negative. In the process he has had a G-tube placed to feed him, sleep studies to help him expand his lungs when he sleeps, and many other procedures to prevent his condition from getting worse. He has made huge improvements. He is getting stronger everyday. The doctors say most children with his symptoms don't live beyond 5 years old, that being said there is no prognosis.

This is Greyson's story. He is undiagnosed. At first I said I would never do it again. But now, selfishly, I say I would do it again. He has taught me so much already in the 10 months he has been with us so far. He has taught me to be a better person. His example keeps me going everyday. He never complains, he rarely cries, he is ALWAYS good. He is special. I know I might not have him for very long, but the lessons I've learned are invaluable. He is amazing. I cherish every moment I get to spend with him. I feel so lucky to have him in my life to show me what matters.

So this is my first entry. It is long and dramatic, but don't worry, they won't all be. I hope I can keep everyone informed about Grey's progress this way.

S U R P R I S E !

2009-09-03T19:00:00.001-07:00

.....with love from your friend of a friend.