Monday, December 30, 2013

TRADITIONS! (As said like Tevye says on Fiddler on the Roof)

This is the time of year when traditions are a huge part of every day life, so I thought I would share a few of our family's traditions.  If I were to think about it, I should probably re-name the title of this blog because these aren't your typical traditions, but they are things we do that make us a unique family and are sweet memories for all of us.

Such as - when you make a grilled cheese sandwich, you HAVE to cut it with the spatula / flipper you used while cooking it instead of a knife.  No, we are not suffering from OCD and just don't want to dirty another utensil, it's just the law of making a grilled cheese sandwich in our home.  (You also have to choose between having your sandwich cut into squares or triangles.  A small detail of the law.)

Music is a huge part of our lives.  Even though not all of us are thoroughly, amazingly filled with the talent of music, we all are known to sing at the top of our lungs, whether we know all the words or not!  Actually, when I think about it, those of us who AREN'T very musically talented sing louder and more often than those that are gifted.  But to continue with our traditions;  when you like a song you must put your thumb and pointer finger together, kind of in an A-OK sign, and shake it back and forth to the beat of the song.  That's the Maughan-universal sign for, "This song is the bomb!"  My dad (Scott, Papa GG) actually is the one who started this gem.  But it is forever linked to our family as a tradition.  Another musical custom we do is a definite Christmas time love; whenever we hear the song "Silver Bells" played - no matter the version, no matter where we are - we have added to the chorus by singing, "Silver Bells. DANG, DANG, DANG, DANG, DANG, DANG! Silver Bells. DANG, DANG, DANG, DANG, DANG, DANG!"  We are actually singing "ding" but it sounds more like "dang" when you do it obnoxious enough, which is the goal.  We have even been known to be alone when hearing this song and sending out a mass text to each other with only the words, "DANG, DANG, DANG, DANG, DANG, DANG!"  It has to be done!!

We also have a nasty habit tradition of saying words incorrectly, but it's completely on purpose.  Yes, it does seem like we are making fun of the person who originally said it wrong, but in actuality it's a sign of endearment.  For instance...molasses will forever in our family be known as "moles ass."  The story behind this is when our kids were little and my sister was babysitting them one time, they decided to make some cookies.  They couldn't find the molasses, so my sister (who is deaf) told the kids to go to the neighbor's house and ask to borrow their "moles ass."  When we got home, the cookies were delicious and a new word was a part of our vocabulary.  My sister has also added "What's your prob-a-blem" to our vocab. 

Alex is another person who has enlightened our minds with new words or phrases.  Probably everyone's most used is to say, "Look! A dolphin!!" while pointing in the opposite direction when trying to distract the other person to steal food off their plate, or get a head's start to run away.  And to answer your question, no.  There is no dolphin! 

And if you do something again, you've done it "two-twice." 

Another famous Al-dialogue is "It's funny so hard!" instead of "laughing so hard."

This is just a few of our quirks.  Yes, they are awesome!!!  And they are what makes us, well, us!

I may add to this list as I think of them or as my children remind me of other things, but this is a good start.  If you comment, please tell me some of your quirky family traditions that are unique to your family.  I would love to know others are as weird amazing as we are!!

Thursday, November 14, 2013

My side of the story...

I started this post over a year ago!  It's been hard to write, and hard to read through each time I added to it.  Not only because of the memories that rush back and flood my head and heart, but because I know I can not do this story justice.  I'm just not able to write what I feel, what I see and even smell and taste that make the whole situation alive.  This time in all our lives has changed us significantly, and hopefully for the better.  I hope writing this down helps Cali see a part of her life that is gone from her memory, but emblazoned on her stomach as scars, seared into her heart as a never ending ache, and even in her veins as she continues to stay healthy for O and CR, and Josh.  I will add a postlude at the end of some more things we have learned since this time..... 
We had a family reunion on Saturday, and after that Josh, Cali and O went to their home together for the first time since Cali "died"!  Josh didn't have to work on Monday or Tuesday and only had a couple meetings on Sunday so they have gotten to spend a long weekend together and see how Cali's emotions do at their house and with Josh coming and going.  I think so far so good! 

Yesterday they got to pick up Quincy's ashes.  Cali was insistent on doing it by herself.  Josh drove her there, but she wanted to go in and get them by herself.  She said she didn't have any memories of any of the past month's events, and she needed to have something that was HERS to remember.  We chuckled that not only is the box labeled Baby Nolast, but Quincy was cremated on Mac's birthday.  Kind of coincidental...  (I've never seen ashes from a cremated body before.  It was interesting.  There were definite bone fragments, including what I swear was a femur bone.  I have pictures, but I will let Cali post them if she wants.  That's kind of personal)  She said she was surprised with how she reacted;  she expected a lot of emotions and feelings, but she actually just felt calm.  She said she thinks it helps to have something... with McKallister we were able to see him, to take pictures of him, etc.  We did get hand and feet molds of Quincy but this is him in a way.  For whatever reason, it was a calming thing for her.

Cali has asked us to write down what happened to her from our perspective.  Since she has no recollections or memories all she has is what we tell her and since we all have a different point of view, she would like to have it in writing.  I probably won't get the days right;  even as they were happening I noticed they were all running together and a big blur, but I suppose the most important point is just what happened.

This will definitely be a long post, and probably boring to anyone but Cali, so now is the time to stop reading unless you're interested...

It was a Sunday afternoon.  I was finishing the final touches on spare ribs for dinner with my parents and brother's family and sister.  TJ and Brandon had stopped over for a few minutes before their dinner with his parents and we were laughing at a picture of Colby that had a horrible sun reflection off his head.  We were laughing at how bald the picture made him look and how he looked like a monk. (Interesting the things that you remember so vividly in a crisis!)  My cell phone rang, and I noticed it was Josh and I thought, "He's calling to see if they can come over to eat." 

Still chuckling at Colby's picture, and that my first thought is 'Josh wants dinner', I answer very non-chalantly, "Hey!"

"Cali has stopped breathing and the paramedics are working on her right now and we are waiting for life flight to take her to the hospital."

     ?   ?   ?

"What? What are you talking about?"  I must admit I'm thinking, "Yeah, you can come and eat here.  But why are you talking about Cali breathing?"

"Cali and Oak went down for a nap and she called me struggling to breathe-"    I start snapping at Brandon and Taylor.  You know the way a mom does when she trying to tell the kids to be quiet while she's on the phone.  Their faces go from smiling to serious instantly.  I'm sure I looked scared.  "-  I called 911 and the ambulance got here and they are working on her and we are waiting for life flight."

      ?   ?   ?

"OK.  Where's Oak?  Do you need me to come get her or meet you somewhere?"

"I have called my mom to get Oak and I will call you when we decide where they are taking Cali."

My mind went into 'just do it' mode.  I threw the rest of the meal into the pan, I sent Brandon to the church house to get Mike who was at a meeting for youth conference.  But then it clicked; "they are working on her." "She had stopped breathing." I broke. I grabbed a hold of Taylor and just cried.  But I had to take care of things so I hollered over to our neighbor, Kirsty, "Will you come over here with Taylor, please?"  And  I ran the food to my parent's house - literally ran,  slopping BBQ sauce all over my clothes;  I must have told them what happened, and I must have taken Alex up there, but honestly I don't remember taking Alex there.  Mike was coming up the street then.  I ran out and hugged him before I remembered I was covered in sauce.  So we ran home to change and wait for Josh's call. While waiting my sister came over.  I remember the comfort I had to be able to sign to her because I didn't feel like I could catch my breath to talk, but I didn't need my breath to sign.  I must have been crying quite loudly because my neighbor Jill heard me and ran over to see what was wrong.  About the same time Josh called and told us to meet them at the U.  Mike drove and Taylor and Brandon came with us.  It's a good thing they were with us because it was them that called Colby to tell him and they were able to keep communication with the neighborhood open. 

When we pulled up to the U I didn't even wait for Mike to stop.   I just jumped out.  I ran to the reception desk and told them we were Cali Hinckley's family.  They asked me where she was being life flighted from and how old she was.  I answered them but I remember thinking, "Don't ask me such details!  Just tell me where she is!!"  The receptionist got on the phone and then told us the helicopter was about 20 minutes out.  I couldn't take it.  I felt like I was smothering so I went outside and looked out over the valley towards Stansbury willing the helicopter to come.  Any movement and I was holding my breath hoping it was the helicopter.  That was the longest 20 minutes I've ever known. 

After a while I noticed Mike was outside, too and he was talking to a security guard.  I went over and the guard was telling Mike which direction the copter would be coming from, where they would wheel Cali from and where they would go from there.    I know now he was just trying to keep us calm, and I hope I get the opportunity to thank him for that information.  We were able to stand on a table and see her feet as they were wheeling her into the ER.  From there we waited in the waiting room.

*This is a picture of the 2 ladies that were on the flight.  Obviously this picture was taken later since everyone is smiling.  These ladies hold a special place in our hearts and they have kept in touch.*

* This picture was also taken later - one of the times Cali went back for problems after she was released - but this is the actual trauma room that she was put in.  Dozens of doctors and nurses and specialists crammed in this room with her all trying to figure out what went wrong.  We found out during later ER visits that Jo Nolast was a well known name around the trauma room, but they all thought she had died.*

Josh arrived and we then found out exactly what had happened;  Cali and Oak were taking a nap.  Josh got home from church - early because he felt he needed to be home with his family - and grabbed a snack and went downstairs to watch TV.  Cali called him (he usually drops his phone on the stair banister when he's home but had it with him this time) and he could tell something was wrong.  He ran up the stairs and must have dialed 911 while running because when he got to her and put her on the ground to see what was wrong he heard the operator yelling at him through the phone, "What's your address?"  He put her on speaker and proceeded to do chest compressions on Cali.  She was breathing in but not out except when he would compress her chest.  The sheriff arrived quickly, followed not too long after by the ambulance.  I guess when emergency staff hears the patient is pregnant they automatically call the helicopter.  When they arrived Oak started yelling at Josh.  He finally looked at her and said, "What do you want?"  to which she replied, "I need Tooty Frooty's dad!"

When Josh tells us this we all laugh, but there's no humor in our chuckles.  Just more of an exhale of breath from all of us.

A social worker comes out to talk to us.  I don't remember his name but he was a big help to us.  He made sure we knew what was happening at least every half hour.  He moved us to a private waiting room just outside the emergency waiting room.  Eventually the Hinckley family and Colby and Kierra arrived so we were all together.  Again, I felt claustrophobic so I went into the hallway, where an air med worker walked by.  I had no idea if she had been on Cali's flight or not but I just had to thank her for doing her job.  I probably looked like a crazed lunatic because I kind of chased her down and gave her a hug before telling her why.  She was one of the women on the flight and came into the room and talked to the family.  While she was there a doctor came in to ask questions;  was she a healthy person?  How about as a child?  Is there any family history of ______________? They asked a whole bunch of questions, and looked just as confused as when they first came in.  One thing they did ask was if she had a history of seizures because they were pretty sure she had one in the ER.  Josh mentioned he thought she had one while he was working on her.  Now is when my head starts thinking about "IF she lives will she be a vegetable?"  "IF."  If."  If."

After the docs leave, Josh starts crying and says, "Will someone say a prayer?"  His dad, Gordon gave a beautiful prayer that gave me some comfort, but I still felt like there was no way Cali was going to live.  The comfort was in the fact that we had just communicated with our Father in heaven and I knew he heard our prayers.  But I also knew everything is in His hands, and that could mean Cali could still die.

Eventually they move all of us to the 4th floor by the MICU (medical ICU).

This sign was on the door for the next 2 days.  It was in this small room that we lived; we sat, we talked, we cried, we checked on each other. 

This is a good picture of Mike showing how utterly useless and scared we felt.  If we weren't in our little, assigned cubby hole we were taking turns being with Cali or out in the hallway trying to make sense of all of this.

After hours and hours of being in that small room, Josh was allowed to go see Cali.  Mike and I took turns going back, too.  This is the first we saw of her after that terrible phone call.  She was in a medically induced coma (they call it the Michael Jackson drug because it causes the patient to forget what they are going through), she had a tube down her throat to breathe for her, although she was on only a small amount of forced air which means she was trying to breathe on her own.  All the white things on her forehead were measuring brain activity to check for seizures.  She seemed comfortable in a very weird sort of way.  Of course when we talked to her there was no kind of response at all.  The doctors still had no idea what had happened, but were eliminating things one at a time. 

Her nurse told us all to go home (which I think everyone had slowly left through out the evening, only leaving the 3 of us) and get some sleep.  There was nothing we could do tonight and we needed to get some sleep.  This was after midnight and she told us there was no reason to come back until 8 am. 
*This is a picture of the arm restraints they had on Cali so she wouldn't pull the tube out of her throat.  They say it is what they do to anyone who is intubated.*

Mike and I went home and Josh went to his parent's house.  I think we slept.  Maybe we passed out, but our eyes did close even though our minds kept racing.  Before we went to the hospital, Mike and I went to my parent's house to check on Alex.  What a blessing to have such a support system that I never once thought about Alex, where he was or how he was doing.  I knew he was fine, but I still needed a hug!

*This is how Cali looked that morning.  There was no signs of any more seizures so they took all those connections off.  They had been "glued" onto her head with this goop that was stuck in her hair, which is why it looks so messy.  She is starting to look a little swollen because of all the fluids they are pumping into her.  *

When we got to OUR waiting room, Josh's parents and sister Rachel were already there. They said the doctors had just told Josh that they needed to take the baby to save Cali's life.  We went into the ICU to be with Josh and Cali - actually I'm not sure if it was just me or if both of us went - but that was when it was explained to us what had happened; some of the amniotic fluid had gotten into Cali's system.  Once it hit the heart (instantaneously) it caused an infection in the heart, which causes cardiac arrest.  There is no test to make sure that is what happened, just elimination of every other possibility.  When we asked how much of the fluid got in her system, we were told they have no idea, and they have no idea HOW it gets into the mother's system.  All they did know is that with THIS pregnancy the risk was too high of it happening again so they needed to evacuate the baby because if this did happen again Cali would die.  There would be no way of saving her.  It was hard to watch Josh struggle to make this decision;  he didn't question whether they should try to save the baby's life or Cali's, but you could see the pain this caused.  There was nothing medically wrong with the baby.  He was just too premature to survive outside of the womb.  And to wait for 4 - 8 weeks for him to be 'viable' was too risky for Cali.

 I was able to go be with her and Josh in her room in the ICU.  I remember her nurse being a man, being good-looking, and being very quiet.  I could tell he took his job very seriously and I was so grateful he was there.  I don't think he ever went home the whole time she was in this ICU.  He was a comforting presence in that room.  Another person I hope to be able to thank someday! 

The next part of the story is such a blur, yet so vivid in parts.  I asked Josh if Cali knew they were going to take the baby.  "No and they probably won't tell her because they don't know how her reaction will affect her health."  That's what I was told, but I don't know if Josh said it or the nurse.  AND the next thing I know they are bringing her out of the drug-induced coma just long enough for us to tell her what had happened.  I'll never forget how Cali looked at Josh;  with such love and devotion, and you could tell he was her strength.  I was just off to the side holding her hand being the third wheel until she signed, "Baby."  Then Josh looked at me with absolute terror in his eyes which made Cali look my direction.  I don't know which one of us told her the doctors would have to take the baby to save her life, but I'll NEVER forget the pain, the anguish that we all felt in that room while Cali screamed "NO!!!"  in sign language, without a sound coming from her because of the breathing tube, but with that word reverberating through the room. 

Then silence. 

They had put her back under. 

I left the room shortly after that.

Colby was in her room for a bit, but came running into the waiting room saying, "Cali is signing something and we can't understand her."  So I went in.  She was asking about the baby and about Oakland.   The interesting part of this is at that time there were multiple specialists in her room to discuss how much brain damage she could have / should have suffered.  After watching Cali and I talk back and forth for a minute, they left shaking their heads saying, "If she can sign and communicate with someone, she will be just fine!"  I think they were actually perturbed that they had been bothered to come observe someone who obviously didn't need to be observed.  Little did they know the miracle they just witnessed!

Again, the timing of all of this is so random.  I'm not sure of the order of what happened next.  I do remember most of both families were at the hospital while they evacuated the baby.  They put Cali back in the medical ICU to watch her closely.  Three of Cali's co-workers came to see her;  looking back on that it must have been hard for them to come visit, not knowing what to expect and her not being able to respond or even know they were there.  But she was coherent;  when her co-workers came to visit I mentioned she needed to get back to work and she flipped me off....

Here's the PROOF!!!  I made her do it again so I could take a picture of it.  I'm a horrible mom! 

Just to backtrack a bit here, I called her boss on Monday morning to make sure he knew where she was.  He had no idea!!  I thought a neighbor of theirs, who also used to be a co-worker would have said something, but she hadn't.  It was really weird to verbalize that "she was in an induced coma, would lose the baby, and maybe not live."  But we are so glad they were supportive and patient.  A good place to work at!  Thanks, Uppercase Living!

 This is another weird thing I photographed that at the time I felt was important.  This is a tag on a cooler that was in her room at one time.  Jo Nolast was the name that Cali was listed under on the hospital records;  it's her "trauma name." That's the name given to her when she was life-flighted so the hospital could gather and store her blood type just for her and make sure she had enough for her stay.  When people would call the hospital looking for Cali Hinckley, they were told they didn't have a patient by that name.  There were a lot of people who thought she had died and that's why there was no record, when actually she was listed as Jo Nolast.  We are only guessing but we think the Jo came from Josh's name and Nolast referring to no last name.  Since this time we have had trauma nurses tell us it's funny what some trauma names are.  One told us that the best one was a big, motorcycle riding man who crashed into a deer - or I guess the deer crashed into him - and the biker's trauma name was Pink Deer.

The rest of that day was calm until dinner time.  Everyone had left except for me, Mike and Josh.  Mike and I convinced Josh to go out to dinner with a friend who had come to visit and get out of the hospital for a few minutes.  It was 7:00 at night - a time in ICU that no visitors are allowed in the rooms so the staff can change and the patients can be discussed.  I'm sure it's also a time they "force" on husbands and parents to get something to eat.  Mike and I went down to the cafeteria and grabbed a bite to eat, then back to OUR room down the hall from the ICU.  At 8:00 sharp, Mike and I started into the ICU to be with Cali.  There was a real urgency in her room.  An electricity almost.  It wasn't just the quiet room with a nurse sitting by her side watching all the monitors.  There were 3 or 4 people in there.  Her blood pressure was diving and they needed to go into surgery again.  They needed Josh's permission. 

"What? Just do it!"

"No.  We need his permission."

Mike had to leave.  It's interesting how when Mike is stressing out, I'm calm and vice-versa.  Well, this was too much for Mike.  I stood outside her room as they unhooked her, called Josh and told him to get back to the hospital (they wouldn't take a phone call for the permission) and just watched.  I truly think I felt her spirit standing next to me because I felt as if this was "it," and yet feeling OK if it was.  The doctors and nurses were so efficient, quick and worked great together.  With all those people moving, talking, giving orders and stats I'm sure it was noisy.  But to me I was in a tunnel and all I could see clearly was Cali while everything else around was a blur.  When Josh got there - and remember he's 6'5" and 200+ lbs talking to a doc who is no taller than 5'8" and quite thin - he stood face to face with the doctor as the doc explained that she was bleeding internally and they wanted to go in and stop the bleeding, but they may have to do a hysterectomy if they couldn't control the bleeding.  Josh had had it by that point.  He stood as tall as he could, got as close to the doctor as he could and said, "Just take the damn thing out!"  The doctor stayed strong, but noticeably cowered a bit while explaining they would only do a hysterectomy if there was no alternative. 

 As Josh signed all the papers he needed to I stepped into the room to take another picture of Cali.  I thought this would be the last I would see her alive.  My heart was hurt, but it was also numb.  They wouldn't let me near her (too many other people and equipment that was necessary), but I don't think her spirit was in her body at that time anyway.  In fact, I felt it was her "telling" me to take this picture.  As they wheeled her away, I grabbed Josh's arm and we went and got Mike and Colby (who had shown up at the perfect time to be with Mike) then went to another waiting room to await the outcome. 

Slowly, one by one and two by two, family members and friends arrived as we waited in the surgery waiting room.  This is when my "freak out" happened.  I couldn't sit still yet felt as if my body was heavy.  So heavy!  I walked.  I walked the empty hospital hallways looking down every corridor that was within hearing distance of the waiting room in case a phone rang or a doctor came to talk to Josh.  I don't remember talking to anyone.  I don't remember really seeing anyone, actually.  I couldn't tell you how long I walked, but I eventually made it to the waiting room with the others.  Such a comfort to have a group of people - some of whom I met for the first time that night - that were all silently praying and all there for each other!

I have to add another piece to the puzzle here.  Another little piece that is so important to this story, and yet a simple piece;  Dr. Ryan Ollerton.  No, he's not the expert here, or anyone on staff at the U of U.  He is Cali's OB/Gyn.  He has been a god-send to our family from 4 years ago, and I will never forget he was one of the first people I called when we heard Cali was sick. 

After Cali had Mac and she went in for her 6 week appointment to her OB at the time (NOT Ollerton) and he forgot she had had a stillborn, even though he had told me when she delivered Mac that he could count on his hands how many stillborns he had delivered and he would never forget any of them, Cali had to find a new OB.  So after getting referrals Cali chose Dr. Ollerton.  I think she went to see 3 other OB's during her search, but just felt comfortable with Dr. Ollerton.  (I work with his aunt and am so grateful to her for reaching out and suggesting him.)  During Cali's pregnancy with O he gave her the security she needed, allowing her to come to his office any time to be checked to help alleviate any fears.  He became a part of our family that was the source of strength we needed then, and the first person I reached out to now.

On our drive to the U after Josh's initial call, I texted (or maybe I called?) my friend Sue (Doc Ollerton's aunt and my co-worker) asking for Ryan's phone number.  She called him, who then called me on his cell and told me to keep his cell number near and keep him in touch.  He then called Josh's cell phone and told him the same thing.  He may have regretted that decision!  I texted him with ANY news we got over the next few weeks!  And believe me that was a lot of texts!  Sometimes dozens in an hour. 

I tell you this piece of the puzzle because that night in the surgery waiting room with all of us was Dr. Ollerton.  Tears fill my eyes as I think of the kind look he gave me when I finally arrived in the room to stay.  Such a quiet strength.  Such a relief. 

We were in that waiting room way too long with no news and I couldn't take it any more.  I called the crisis phone line (they gave us the number our first day there saying we could always get info if we called that number.)  They said they would call us back....

I think we all talked while waiting.  I think the TV was on.  I think there was laughter and tears.  I'm not sure.

I got a phone call and a few minutes later the surgeon came out to talk to Josh while the multitudes gathered around.  The person on my call was someone from the operating room who told me that she had gone through a lot of blood, that they had had to revive her a few times (I think he said 4 times) but she was still alive and someone would be out to talk to us soon.  As we were signing off  the call the surgeon came out.  Since I was finishing the phone call I was on the outer edges of the circle, and I couldn't hear anything he was saying.  I'm sure he was trying to be discreet and talk to Josh, but "dammit man!" we all want to know what's going on!!  Finally, I pulled the embarrassing mom card and said, "Talk louder!  We can't hear you!!"  (To this day Josh reminds me how tacky that was.  Too bad!)

She had survived the surgery.  They told us how much blood she went through, but I don't remember details.  Only that it was more than 2 times the volume of blood a body holds.  They had to revive her multiple times during the surgery, and they did have to do a hysterectomy.  The uterus was just too traumatized to keep.  Even though that cut short my daughter's chances of conceiving any more children, I was so glad they took her uterus out!  I think that was the majority consensus in the room that night!  "She's alive and won't be able to have any more children!!  YAY!"  Sounds morbid, but so true!!  None of us wanted to see her suffer any more; no more stillbirths.  No more blood clots - at least due to pregnancy - and no more amniotic embolisms!
 One by one, two by two people went home.  Josh, Mike and I got to go see her in the ICU, but then we all went home to try to rest.  We were told she would continue to be vented for a few days and so she would be kept in the induced coma so she wouldn't know if we were there.
First thing the next morning we got a call saying she was off the vent but things didn't look good so hurry in.  What?  I thought she was going to stay on the vent?  I thought she would be allowed to recover in a coma?  What?
We got there and she was off the vent.  Whatever the problem had been seemed to have righted itself because they were no longer as concerned as they were when they called.  (Sorry I don't even remember what the drama had been for!)  Josh was there.  Cali looked at us, but was in and out.  A lot of docs came through checking everything from blood levels to temperature.  At one point she smiled and I noticed the left side of her face didn't move.  I told this to the doc and he said they were watching it.  Wanna hear something funny?  When I don't feel good and I smile the left side of my face doesn't move!  It's not paralyzed, it's just a crooked smile we give when we are trying to be positive yet don't feel good.  I didn't even know I did this until I watched her so closely over the next few weeks!
What happened next?  The physical therapists came in and helped her walk around her bed.  Yup!  PT doesn't really stand for physical therapy, it stands for pain and torture, and that's what it was for me to see her be MADE to stand, to walk, to sit back down and then lie down after having 2 major stomach surgeries in the past 48 hours!  Meanies!  But I have to admit, that was when I first started seeing the spirit come back into her eyes.  Until that point, I believe her spirit lingered between here and the eternities, staying more often in heaven than here. 
We still took turns in the ICU, but we didn't have our own little room anymore so when we were in the waiting room we got to meet a lot of people who had family in ICU as we watched the time sludge by.  Cali got a lot of flowers, we got a lot of food and notes as well as phone calls and even visitors.  One in particular stands out, just because it was another source of relief;  Elder Paul Johnson (member of The Seventy of The Church of Jesus Christ of Latter Day Saints) is also our neighbor.  His wife, Jill, is one of my best friends and our kids helped raise each other!  Well, Paul brought some fresh fruit for us and said when Cali was awake he had a message from President Monson for her.  Ummm....  she's awake...  come in!!
Paul said, "Cali.  President Monson wanted me to come check to see why all the answers to prayers were being directed to the U of U hospital.  I can now go tell him that they are being put to good use and not to worry!"  Now, I don't know if President Monson really sent well wishes to Cali, but I do know that Cali's name was presented to the General Authorities to add to their prayer list, and I also know that God does hear and answer prayers!
Another side note here.  Remember the "vulture lady" I eluded to in a previous post?  Margaret?  Sweet, little, old lady who was the ICU's social worker that was waiting for Josh and Cali to sign either Quincy's death certificate or permission to cremate or something or other?  Well, she had been walking past Cali's room off and on that morning and when I brought Paul in to say HI to Cali, she made another pass past the windows.  After Paul declared President Monson's concerns, Cali looked at me and said, "Who is that creepy stalker lady?!" then went back to sleep.  Josh, Mike and I knew who she was referring to, but poor Paul thought he was the creepy stalker lady!
Since Cali was in ICU this whole time, O didn't get to see Cali.  That is until they took Cali for some test - an MRI or CT scan - and we had O waiting in the hallway for her, and the techs made sure to take her a certain way so they could see each other.  It was very endearing! 


I truly think this was a huge turning point in Cali's recovery.  The love was physical in nature in that hallway that evening!  Josh holding O, them waiting in anticipation for Cali, Cali's pure joy when she saw them for the first time together!  This is another point I can't say I know who took care of O all this time, but I never worried about her!
 This is a picture of Cali without a vent!  She's supposed to be giving us a 'thumbs up' but it looks more like she's threatening me if I take her picture!

Besides the ashes, this is all we have of our sweet Quincy.  A little hand print and 2 sets of feet.  They are beautiful!  To believe that a baby who is not able to survive outside of his mother is so perfectly formed to have fingers, toes, even the cute, little lines in his hands!  God is great!  I had asked Margaret if it was a possibility to get something - anything! - but this was the day after they took Quincy.  She had no idea, but obviously she took control and thanks to her we have a few treasures we wouldn't have if she hadn't tried!  One person can really make a difference - something we should never forget!

It's interesting how I can't be as specific about events from this time forward.  I simply can't remember them.  I know we were back and forth from home and the hospital, and that either Josh, Mike or I were always with her.

 I do remember when they took her out of ICU they put her on the birthing floor - not the smartest of moves!  Their thinking, of course, was to give her the medical help she needed post-partem.  But they put her in a room with an isolette sitting in the corner.  Cali had a major headache which wasn't going away with any form of pain meds, and I tried to rub her head - something her and I do quite often for each other.  She got frustrated with me - I know it was from the pain - but between seeing that isolette, her getting upset with me and lack of sleep, I broke.  I left the room, and the first thing I hear is a newborn baby crying.  I found the closest poor nurse available and gave her a lashing (as if it was her fault!) telling her to get that isolette out of that room, and find a different place to put my daughter!  It wasn't fair for her to hear newborns, and it was hard for us, too.  I was mad at myself for taking out my concern on a poor nurse.  Mad that I had to be put in that situation, and yes even mad that I couldn't do anything to help my poor little girl!  They moved her, not sure where probably because I was in Mama Bear mode and was just glad they moved her.  I stayed with her, but was useless... I zonked out!  The nurse got Cali a headache "cocktail" from the ER, stayed and talked with her, and I guess I knew she was in good hands and I slept well enough to interrupt their discussion with my snoring!  Mommy of the Year Award, here I come!

They moved her again the next day.  She was still in maternity, but in a different area that was more accommodating, and less..... maternity! Josh, Mike and I took turns staying with her, and we wouldn't have it any other way!  It was nice for O to finally be able to come spend time with Cali, and it was nice for Cali to be able to have more visitors than just the 3 of us.  She still had some problems; weird swelling (that's all I'll say about that), her milk came in, dizziness and weakness, but all in all she was slowly getting better.  She even peed on her dad!  Yeah, you read that right!  A bonding experience not many adult children get to have with their dad.  It was Mike's turn to spend the night, she needed to use the bathroom, and they didn't make it.  OOPS!  Oh, well.  They laughed about it, and it just shows how grateful we were that she was alive.  "Go ahead!  Pee on all of us!!"  I got to help Cali with her first shower of her new life.  It was long, greatly appreciated and we both came out sopping wet even though I was still dressed and wasn't supposed to get wet!  Who would have known a shower would bring such happiness!  You can read past posts to get even more details of this time frame, here.

When Cali was released from the hospital, they stayed with us for a few weeks.  She wasn't allowed to be alone for any length of time, so while Josh tried to get some work done, she was stuck with me and all my little hoodlums.  She did end up back in the hospital a few times (see this post, and this post, and here and even here) but she recovered so much better, and quicker than anyone expected.

I guess this is my postlude.  I'm not sure where else to start this.  Within this past month a lot has happened in this "story."  Cali's flight nurses - yes, they belong to her now! -  got the opportunity to present Cali's case to a conference of Life Flight crews from around the nation.  It was held in Virginia and as they were preparing for it, they talked a lot to Josh and Cali to make sure they got information right.  Cali and Josh decided they needed to be there.  They needed to go to hear the whole presentation, beginning to end, and let Cali have something of a memory.  Before they left, they were able to get a copy of Josh's 911 call.  Mike insisted on NOT ever listening to it.  I insisted on listening to it because I knew I could separate myself and be analytical, and I thought, "How interesting!  Not many get the opportunity to hear such calls."  HA!  Analytical my eye!!  I didn't last 30 seconds and I bolted out of the room.  I heard Josh talking to the operator.  And then slowly, as if someone was turning up the volume, I could hear Cali moaning.  You've heard of a death moan?  This had to be it.  No other way to describe it.  When the tape was over, the rest of the family that was able to continue to listen came out, mostly in tears. 

During the presentation, Josh and Cali got to sit in the back of the room.  They were surprised at the size of the group;  it was smaller than they expected.  This was a huge conference and they expected a couple hundred people to attend this class.  But, it was one of the last classes (participants got to choose from multiple classes) on the last day of the conference, and a lot of people had already headed for home, or attended another class.  So, in this class of about 50 people - all medical professionals, Cali and Josh sat in the back and watched and listened to their reactions.

They started the presentation with how Josh and Cali met, their love story, using pictures from Facebook and their blog.  Then they introduced Mac, then O, showing pictures of both.  They told of  all of Cali's health issues with each pregnancy; the fear that they had to try to have another baby.  The excitement when they found out she was pregnant again, with another little boy!  Then they played the 911 tape...

Heads started shaking.  Whispers back and forth to each other. 

"Sounds like a stroke."

"This can't be good!"

They discussed how combative Cali was when they first arrived.  There were 5 EMS men trying to help when these 2 women walked in, and the one's comment was, "That little thing is kicking all of your asses?" 

Their first thought was that she must be freaking out on some drug.  When they asked Josh what she was on he of course answered "pre-natal vitamins..."   and they figured the poor husband didn't know his wife was a druggie.

They vented her;  in other words they knocked her out so that they could do what they had to do medically to help her.  They think this is what saved her life.  In preparation for the presentation, they had to do a lot of  research and study a lot of material on amniotic embolisms.  They found that Cali is the only pre-birth sufferer that is still alive.  They also found that among those that had an amniotic embolism during childbirth, 90% of those died, and of the 10% that lived, 90% of them have significant brain damage.  (My numbers may not be 100% correct.  The point being that she shouldn't have lived, and she certainly shouldn't be able bodied!)  They think that because she had machines breathing pure oxygen for her during this time frame since she was vented, that that not only kept her alive, but kept her brain from going to mush.  It is the only thing they have found different from Cali's case to others they investigated.  Now, we can get all scientific and say that they vented her for safety sake.  Which is true!  But even those that were there admit that they had angels helping them protect Cali.  They admit that for one thing, Cali shouldn't have lived long enough to call Josh, let alone be combative to fight off the EMS workers.  They acknowledge that there should be no reason that an amniotic embolism diagnosis would cross their minds, seeing that the patient was alive, and yet that is what they radioed ahead to the hospital when they were en route.  A higher power was in charge of what was going on in Cali's life, Josh's life, the AirMed's crew's lives and many others who helped take care of Cali.

OK.  Back to the conference.  The nurses presented everything; surgeries, amount of blood lost and given, doctors, specialists, problems that occurred.  They showed them pictures that we took of everything...  the whole while the audience is just soaking it all in. Near the end of all this, the one nurse walked to the back of the room and got Josh and Cali.  As they neared the front of the room, they were recognized and as they walked onto the stage the audience gave them a standing ovation!  Then they were just mobbed!!  Questions were thrown out from every angle!  Finally, someone had to put a stop to all of it by inviting Cali and Josh to dinner with all of them.  They got toasted over and over during dinner.  People apologized if they were staring but they were just astounded how "normal" Cali was.  Josh got toasted from someone saying, "I know I've been trained to do what I do, and as a professional I do it.  But as a husband, I don't think I could have done what you did with the calmness and strength you did it with!"  Multiple times they were told that their story, and being able to meet them made this the best conference ever!

Since this time Cali, Josh and O have been blessed to have a new baby placed in their home that they will adopt in December.  Cali's health has been amazing when you consider what she went through.  In fact, there were a few times I had to remind her that "Of course you should be tired!  You died and had 2 major surgeries 2 months ago!"  The clot she got in her neck has caused her to have constant headaches, and her memory at times isn't what she thinks it should be, but all in all she has recovered completely. 

Please know that what I lack in writing skills, I have gained in a testimony of a loving God and Savior who know each and every one of us and is with us through all our trials.  They won't let us go through anything we can't handle, and they are always putting people in our paths to help us through these times.  Tell family and friends your love for them.  Don't let a moment go by that you don't appreciate what it's worth.  Live. Laugh. Love. Believe. Hold on!

Saturday, October 5, 2013

October is a GREAT month!

I love Fall!  Love, LoVe, LOVE!!  It's crisp, cool, beautiful.  This week has been a bit too cool for me, I would rather move into it a bit more slowly, but it still has been a great Fall beginning.  But that's not why I think October is a great month.... and NO!  It definitely has NOTHING to do with Halloween!  (Not a fan!)  It has to do with 2 very important events that occur during October that have made me the person I am today.
October is National Down Syndrome Awareness month!  Happy month!!  Where would I be without Alex?  First of all I think I would be a more selfish person.  I would definitely still be working full time, and I know without a shadow of a doubt that me quitting work has been the best thing for my whole family, not just for Alex.  And I'm not just saying the other kids had an easy time of finding daycare.  No. Or that my house is a pristine palace.  Definitely not!!  I really feel that taking care of Alex, quitting my job, being more aware of the needs around me that I was a better mom than I would have been if he hadn't come into our lives.  Has it been easy?  NO - did you read one of the last posts?  But it has so definitely been worth it! 
On Facebook I posted an announcement that October was DS awareness month and to "hug everyone you see because that's what a person with DS would do."  My funniest - and most truthful comment came from Taylor.  She said, "I'm thinking I'll try to wrestle everyone I know, and hit on people I've never seen before."  Definitely a better description of our Al!

The other reason I love October is because our church has a semi-annual General Conference where our leaders speak to us and we hear beautiful music that is as inspired as the talks.  This morning's session - WOW!!!  Inspiring, electrifying, satisfying, calming...  I can't say enough!  And as I listened to the words our prophets and apostles spoke  (yes!  Living prophets and apostles spoke to us!) I was so very impressed with the happiness all the speakers exuded.  But how could they not be happy?  OK.  Maybe speaking to millions of people would make one nervous, but they still are so happy.  And that's because they are sharing the Lord's gospel.  The same gospel that Christ himself taught and was such a great example of, was restored by a young man of 14 years of age, and is still here on earth.  This church is led by Christ himself, hence the name The Church of Jesus Christ of Latter-Day Saints!  The prophets and apostles teach us, just as they did so long ago, but it is through inspiration so everything they say is truly what Christ wants us to hear.  Please.  Please!  Follow this link and listen to or read their words.  It will make you happy!

So.  Happy October!!  Hug someone.  Wrestle someone.  And listen to the Prophet's voice.  What a great month!

Tuesday, September 17, 2013

Now is so much better!

Megan Goates is a Westminster College and USU alumnus, a mother, and a blogger at Here's to Our Survival.Description:  This article written by her was on KSL today, and I loved what, and how, this woman wrote.  I highlighted some of the passages;  the red print are thoughts I've always thought about how our family changed with having a special needs child in our family.  The blue print is me.  Now.  When our kids were younger our house was cleaner.  The meals were more diverse.  Our yard was perfection.  Now?  I really don't care.  Perfection really can be drop-kicked down the street.  I have my family and friends and I have the gospel in my life.  I can't ask for anything more.

I used to be a perfect mom, but my special-needs kids taught me otherwise
SALT LAKE CITY — Ten years ago I was the perfect mom. I mean it — I really had the parenting business buttoned up.
I was a 26-year-old stay-at-home mom doing just what I had always wanted. I had finished college and graduate school and after five years of married life, I was getting down to business in the field of my dreams. I lived in a little World War II-era bungalow near Sugarhouse Park where my engineer husband worked out of his office in the basement and I spent my days caring for our darling 1-year-old son.
Every morning I brisk-walked to the park with a group of my friends. We pushed our toddlers in jogging strollers while discussing baby milestones and post-pregnancy recovery.
I started a playgroup and a book club. I canned my own strawberry jam. I volunteered at the church cannery. I handcrafted our Christmas cards. I learned to piece a patchwork quilt and hand quilted a small masterpiece. I cleaned my tiny house every Monday, took my child to the zoo every Wednesday, and visited story time at the library every Friday.
I was the president of the Young Women's organization at my church. I hiked nearby trails with my baby on my back. I took a 30-minute power nap every afternoon while he slept.
It seemed every time I left the house with my precocious strawberry-blond son, friends and strangers alike complimented me on my adorable little boy. I mean seriously, when it came to motherhood, I had nailed it.
A lot can happen in 10 years.
We now live in a bigger house and I drive a bigger car. We have four sons instead of one. I no longer can jam or hand stitch quilts or handcraft cards. I definitely do not take a nap every afternoon. But it's not just the trappings that have changed in my life.
With my second son's birth nine years ago, my family's trajectory changed in a big way. Our baby was diagnosed with a rare syndrome and autism. Beginning then, we entered the realm of different. We learned about developmental delay. We met with oodles of pediatric specialists. We aligned ourselves with Early Intervention and a support group. We stopped going out in public much because of our second child's meltdowns. Our focus turned to survival.
Everything became harder.
This year we learned that our third child also has special needs, albeit in a very different manifestation than his big brother. This turn of events has not been easier than the last diagnosis because we have done it before. If anything, it is more traumatic because we have done it before. And now there are two.
But with these diagnoses, my clan has become more of what we started to become nine years ago when the second boy arrived. We are less apt to judge people who look or act differently. We are vastly more tolerant of messes because they are our constant companions, no matter how hard we try to eradicate them.
We know the embarrassment of being a frequent public spectacle with a tantruming child. We have had practice looking past people's quirks to see the person at the core. We understand that "destruction of property" takes on a whole new meaning when special-needs children are around.
We (meaning me) are way less smug. In fact, we (me) acknowledge that most of the time, we don't know what the heck we are doing.
We have more patience with people. We have less patience for unnecessary activities, which deplete our time and energy. We've learned to sometimes say no when we are asked to do things because anything extra usually takes us past the tipping point.
We care less about stuff. We are gentler. We feel genuine empathy for someone else's hardship.
We aren't anywhere near perfect. We don't even care about perfect. We think perfect should be dropkicked down the street.
This isn't the family I envisioned as a newlywed or as a young know-it-all mom of one kid. But it's my family. And they're making me into someone I like much more than that smug 26-six-year-old who thought she had it all figured out.


Thursday, September 5, 2013

Counting my blessings...

Enough of the blues!  No more whining and complaining.  I'm gonna pull up my big girl panties and tell you some things that make me happy! 

Yup!  This little girl's Papa makes me happy, too.  Funny thing is, I had to make sure and not put her face in the pic because she was crying.  But she loves her Papa, and I love him, too and he makes me so very, very happy!

Turtles.  Why not?  They make me happy.  It's so fun to watch how the kids react to a turtle.  This turtle lives in Brandon and Taylor's front yard.  He's lived there for 40+ years!  He's survived many kids loving him and feeding him, and I hope he lasts another 40!

 Castles.  Especially castles with a porta potty in the front yard...
The castle and this cute pic of me and Al are actually at a dinner and dance provided by a company in Heber.  They served us turkey legs - each and every one of us, along with a buffet of salads and rolls and desserts.  They have this party every year for people with special needs and we crashed the party!  It was a lot of fun and I'm so grateful for people like this company who give people with special needs an opportunity to have fun.  Especially at a castle with a porta potty!!  Pure happiness.

Conveniences.  I could make a list a mile long about this.  The button on the car keys so it unlocks, locks the doors or even opens them...  can openeners... socks... make-up, make-up remover... paper towels...
 These are pictures of Taylor mowing with C and me getting ready to edge with N.  Taylor and Brandon hosted a baby shower for Cali, Josh, O and baby CR.  They did such a good job and things worked out beautifully, even though it down-poured for 2 hours right before the shower was supposed to start.  But this was us the day before sprucing up their yard.... 
...and this is Taylor holding CR, Cali and I under Taylor and Brandon's patio the night of the shower.  It was a great night, with good friends and a special occasion to celebrate!  Happiness!!

Ducks and geese.  Wheeler Farm - the fact that it's FREE! 
The sound the geese make when they are so happy to see us!  The sound the kids make when the geese are getting a little too close!
And the bravery of this one goose who allowed N to pet him for a good solid minute.  Until she decided to smack him on the beak.  Yeah.  Even that made me smile!

 ...and hugs and cuddles.  I am so blessed to be able to see my grandkids often!  And I steal all the kisses, hugs and cuddles I can!
 Come on!  Cute, old men!  How can they NOT make you happy?!  So, this isn't an old man, but he sure is pulling off the old man look in this pic.  What I want to know is, why are old men cute and old women aren't?  Don't deny it!  It's true!!

 Rainbows!!  And double rainbows make you giggle!
 Ummm...  ???
A went through a faze where she put on any piece of clothing she could find; hence the swimming diaper around her ankle.  And N is in the car seat, so A HAD to kiss her.  Even the random "Ummm"s make me so happy!
 Smiles.  Giggles.  Laughs.  Guffaws. 
Yup.  All on my happy list...
 And I will end this list with a beautiful sunset.  This picture doesn't do it justice, but the sun this night was blood red!  Too many wild fires about, but it made for a gorgeous evening! 
And last but not least, I have to thank my Heavenly Father for all of these blessings, for I know that all I have, or all I will ever receive is because of Him.  Even comfort;  when I was so down about  - well, a lot of things - I sat in church trying not to cry and just opened the Hymn book to read to calm my heart.  The book opened to hymn number 110.  I didn't know the tune so I couldn't sing it in my head, but the words were of such comfort and peace;
Cast thy burden upon the Lord, and he shall sustain thee.  He never will suffer the righteous to fall.  He is at thy right hand.  Thy mercy, Lord, is great and far above the heavens.  Let none be made ashamed that wait upon thee.
So, look around and see the glories that we have been blessed with.  Smile.  Hug.  Pet a goose or hold a turtle.  Read a hymn.  Whatever it takes, find that happy place and hold on tight!!!

Thursday, August 29, 2013


In the heat of my blubbering and the pity party I threw myself yesterday, I also threw Daddy Ernie and Mommy Dana under the bus.  I have changed the previous post to still address my concerns, but hopefully without sounding like I'm placing the blame on anyone.

Daddy Ernie - you were a kid and yet you took the responsibility - and continue to take responsibility -as Alex's birth father!  You are a kind, caring man and we are so lucky to have you and your family in our lives!  I'm grateful for our relationship and hope I didn't hurt your feelings too badly.  It was out of selfishness and I am so sorry.  And I also know that you pray constantly for Alex and think of him often, as he does with you and your family.  You are a great father, and we thank you for sharing Alex and the rest of the clan with us.

Mommy Dana - it's been a long time since we have seen you, but I want you to know you are always welcome to be a part of Alex's life when you are ready.  What I wrote earlier came across as rude towards you and I did not intend for it to.  I was frustrated, but that's no excuse and I am so sorry.  We pray for you always and Alex knows how amazing you are, because we tell him constantly that only an amazing person could share their little boy.  And just look at your 2 kids!  Wow!  Thank you!

Wednesday, August 28, 2013

I need a Fluffy, a stiff drink, or a good cry

Or maybe I need all 3!

This is a picture of a Fluffy.  Yes.  I know this is really Winnie the Pooh, but according to M his name is Fluffy.  And obviously since I'm having to hold him sitting up while taking his picture his name didn't come from the fluff and stuff inside of him.  Nope. It's because as she's falling asleep, M "fluffs" his nose with her thumb.  (That's the technical term for rubbing his nose.) 

There's only 1 Fluffy and he's M's, I don't drink, stiff or otherwise and I have had a couple of good cries lately, but sometimes you just need to scream if nothing is left!  Hence, the new post!  Instead of screaming I'm going to vent through the blog sphere.  Again.

You know, it's not even that bad of a thing.  I know of others who are living trials right now much harder than mine.  Heck, I've had much harder trials than I am going through right now.  But OOOOOO.  Sometimes being the mother of a child with special needs is so hard.  And I've been feeling that stress lately.

Right before school started I wrote his teacher an e-mail and vented;  I'm a pretty strict mom, and when I say "If you don't stop doing that I will ___________", then __________ will happen!  But this obstinate child of mine hasn't figured out that I mean business.  We set up an appointment to talk, and after she assured me that part of the problem is hormones (a 16 year old going on 3 isn't a good mix!) then she agreed with me that there is something more neurological going on.  She has seen the anger - for no good reason really - and how hard he fights that emotion.  It really is a CAN'T stop more than a DON'T WANT TO stop when he gets in that mode.  It's hard to watch.  He knows right from wrong.  He knows what is appropriate and what isn't.  And, yes, he knows how to push my buttons.  But honestly, that's not it!  I know when he (or most other children for that matter) is testing me or trying to get my attention, and this just isn't that.

I TRULY believe there is something more happening in his little body.  And I'm OK with it.  But when I talk to the doctors and I get nothing - no, worse than nothing - I get poo-pooed about it, I get so frustrated.

I e-mailed his docs just to see if there IS any actual studies done that would validate my feelings, or could help us know what else we need to do to help Alex, and in that e-mail I told a story of something that happened at school.  I'm sure I've blogged about this, but I will re-tell the story to jog the memory;  he had been off of one of his ADHD meds for 36 hours because of an insurance snafu and all of a sudden at school he zoned out.  Way out!  His teacher asked him if he was OK, to which he answered, "NO!" and ran out of the door.  It took 2 teachers and a police officer to catch him and bring him back to the class.  While his teacher calmed him, he kept saying to her, "That was so scary!"  "I was scared!"   And she said you could see the fear in his eyes.  And when he was finally calmed down a bit he looked at her and said, "I need a smoke."

For those who don't know, no one in our house smokes.  No one in our immediate family smokes.  Actually, no one in the neighborhood does, as least in Alex's line of vision.  But there are times in his life that he is obsessed - and I'm not using that word to make a statement - he truly is obsessed with smoking.  He has followed people to watch them smoke.  He will stand by an outdoor ashtray and count the cigarettes.  Once when we went camping he spent over 2 hours looking through the ashes in the fire pit because the person before us had obviously smoked and put the butts in the fire pit and you would have thought he found a pirate's treasure!  This doesn't happen all the time.  I wish I had been a bit more observant as to when he has gone through this obsession, but it's such a strong need for him that he has actually taken one of his K'nex sticks and put it in and out of his mouth like he would a cigarette.  Now this is where I got poo-pooed.  The doc says, and has said before, that he thinks Alex is just doing it to get attention.  That I need to stop making such a big deal out of it.  I think the doc thinks I'm this little Molly Mormon who doesn't want my child doing anything to embarrass me in front of all my Molly Mormon friends.  What he doesn't get - even thought I have told him this - is I HAVEN'T made a big deal out of this.  When he would smoke his K'nex I just asked him to please go outside to smoke so the house didn't stink, and then asked him to shower when he was done.  There have been times he has spent an hour on the back porch smoking!  And what other mom would let their child poke through a fire pit for 2 hours?  He's not getting extra attention from me, but these are things I would ask any family member to do in my house if they smoked.  I'm not just going to let him "smoke" and act like he's reading a book!  If he was picking his nose constantly I would at least take his hand out of his nose because it's offensive! 

But the smoking was just an example I gave about his obsessions.  He also obsesses about matches and guns.  Yeah - all great things for someone to want so badly it could kill them and /or others in the process!  What I'm really frustrated with is I'm not being taken seriously.  I feel like I'm getting a bad reputation as a complaining mother when in actuality, I could complain a whole lot more than I do!  And maybe that's what I need to do.  You know, the squeaky wheel gets the grease.  But that's not me.  I'm trying so hard to look at the positive side of things, that to complain will only highlight things that are bothersome.

OK.           I need to know some answers!  And is it too much to ask for answers without judging me?  A simple 'yes' or 'no' would suffice!

I think I'm feeling overwhelmed with this because EVERYTHING with and for Alex is a fight.  Anything I ask of him I get a negative answer.  I could ask him to play a video game - something he would do 24/7 if I let him- and I would get some sort of snide remark from him.  At church I have been kind of pushed to the side so that Mike can answer their questions...  I'M THE ONE WHO DOES EVERYTHING FOR HIM!  I'M THE ONE WHO KNOWS WHAT HE CAN AND CANNOT DO!  Sure, Mike can probably answer the questions, but I can promise he more than likely will ask my opinion first because he knows I'm the one who truly knows the answer!!!

 And then I have been filling out the forms for SSI.  OH. MY. GOSH! How many times do you have to answer the same question?  They want so many details I'm worried they are next going to ask when I last had a bowel movement!

I just wish that people could see in my heart and understand all I want is what is best for my boy.  All I want is for him to be happy, comfortable and confident.  Is that too much to ask???