The Dark Side of Being a Mom

I've been thinking the past few days about how being a Mom feels like serving a prison sentence.  I'm starting this post off with a bang, but I will share some funny anecdotes as well.  My dad sent this to me on Facebook and it's so true.

10 ways having a toddler is like being in prison:
1. You can't do anything without constant supervision.
2. Every morning begins with someone screaming at you to wake up.
3. You're always terrified something bad will happen while you're in the shower.
4. You're always scared someone is going to crawl into your bed in the middle of the night.
5. Meal time is fraught with tension.
6. Someones always watching you go to the bathroom.
7. You never get to choose the movie and then it's hard to hear it over all the hooting and hollering.
8. You're always terrified someone is going to punch, bite, tackle, stab or attack you with some kind of makeshift weapon.
9. Contraband - like booze, chocolate and adult entertainment - must be smuggled in and consumed in secret.
10. Conjugal visits are hard to come by, require intense scheduling, and are often interrupted.

Now that we got some chuckles in, I'm going to dig deeper.  There have been many posts and articles circulating on Facebook that parents have written.  Posts on how being a parent is really hard, ways to discipline kids, and many other topics.  One line that stuck out to me in one post is how a lot of older people will tell you how much they miss having little ones around.  And how fast the time goes and to appreciate every moment.  The person writing this post said how that comment doesn't help anybody, and in fact it makes them want to hold their head under water for a few seconds.  I thought that was pretty funny.  Because there have been several ladies, one in particular who is older, that tell me every time they see me and my kids, how much they miss having little ones and how fast it went.  I just look at them and smile, while inside I am also thinking 'yeah, ok- how long ago was that?  You are well rested right now, content with your life of quiet and endless time to yourself- of course it's easy to look back and say you miss that.'  That comment only makes a tired parent feel like the time WILL never end, and makes you feel bad for not appreciating every moment.  This is a big no-no people, please don't say it.  It does not help.

Another thing I have noticed is when mothers need to vent, people are always out there to top your story or to show how well they are doing.  They post pictures of their perfect dinners, their well dressed happy children, their activities and family home evenings.  This only makes a parent like me feel, well, more tired.  I feel like I can barely keep my kids fed, changed and entertained for so long without feeling like I am going to freak out.  I don't know if some moms are pre-disposed to be more patient, creative and selfless, but I feel very inadequate to the task.  4 years of being a Mom and I still feel overwhelmed, inpatient, and irritated.  I don't feel fulfilled in my role or satisfied.  Does this mean I want to go to work?  No.  I don't want to miss out on those precious moments that do happen.  I want to be there for my kids to keep them safe and protected.  But when I say I am a home maker on forms or when people ask if I work, deep down, I do feel inadequate.  And for me, it has nothing to do with the world's view.  It is just so much harder, more tiring and draining then I ever thought possible.  Did I ever want a bunch of kids?  No.  In fact, kids used to bug me.  A lot.  I loved holding  babies, but that was it.  But I did know being raised in my church, that a woman's goal and ultimate happiness was to be found in being a mother.  I have not found that.

I love my children very much, and I miss them easily.  I have a great support system, family living nearby and a wonderful husband.  But I am still bone weary, drained and barely getting by.  I do push myself hard- I push myself to have a very clean house.  No matter what.  But that is because it makes me feel more at peace with myself.  Accomplishing this is very difficult with little kids, but still possible.  "Cleanliness is next to Godliness."  The first thing to get me grumpy is a messy house.  I do not cook much or well, or do great stimulating activities with my kids.  Reading a book and doing a few puzzles wears me out.  Do my kids watch TV?  Absolutely.  The small things are just things you never realize until you are a parent.  You can't go to the store without all their shoes, coats, sippies, your purse, your coat, until you feel like not even going out.  Too much work.  Planning any outing takes consideration and time in packing a diaper and feeding bag.  Going to church requires a lot of energy and patience.  Showering and going to the bathroom means little ones following you constantly, while making messes that you just cleaned and dumping all your stuff out.  Trying to get anything done is a herculean task at times, and you just want to snap to be left alone for goodness sakes!  You want to eat when your hungry instead of having to feed your kids, clean it up and then repeat the process and you finally get to eat like an hour later.  Being woken up by your 4 year old multiple times a night, leaving you tired for the early mornings.

Wanting to watch a favorite show, but your kid won't nap and you are exhausted.  Having people that want to visit and really you just want everyone to LEAVE YOU ALONE.  When the house is quiet, I treasure that sound.  I miss the quiet.  I miss my house staying clean, and fingerprints not on everything.  I miss having order, and things in their place and not randomly missing.  I miss sleep, I miss hygiene and taking care of myself.  I miss....me.  I don't know who that is anymore.  I am overweight now, cranky, overwhelmed, tired and not so pretty anymore.  If I get to do my hair, it isn't great.  I know I am now getting into a pity party.  The reality of being a mom is, well, horrible sometimes.  I know many can relate, but I feel this way a lot lately.  Granted, a big part of my emotional turbulence right now could be due to the fact I'm pregnant.  I am 11 weeks along now and even more tired and irritable.  Now you're probably asking, why am I having a third child?  Well, I am ok sharing that.  Carter is our oldest as you know, this is his blog and he is disabled.  Having Sierra was not a hard choice because we knew we weren't carriers of 1p36, and we felt having a normal child would help us out in dealing with Carter.  It has helped in a lot of ways, but we are still teaching Sierra to be nice to him.  But what we noticed in raising both kids, is with Carter away at preschool and even when home, they can't really play together.  Carter will be like a baby for a while yet, and Sierra is growing fast.  We knew she needed a sibling, someone she could play with.  I'm not saying she won't play with Carter, but she needs a companion.  She will be like a single child if we had no more children, and I think she would end up being more difficult and spoiled.  I think she will need someone to share with, play with, teach with and yes, help Carter with.

Carter also gives being a mom a harder, longer perspective.  Having him be our first means we will still have to take care of him, while dealing with smaller children and babies.  He isn't our last, where I can just focus on him.  Nope.  He is our first, and instead of being the older brother and helping out, he is still like a baby.  This is hard.  Also, not knowing how long he'll need to live with us and need daily help is also hard to think.  With most kids, at around 18 you can think of them progressing on to missions, college, marriage, etc.  But with Carter, well, he'll be around as long as he lives.  I want him to live a full life, but I don't want to sign up for all of that time.  It's overwhelming to think about.


 I anticipate a harder road ahead also, because of having 3 babies and Chris gone more at school.  Sometimes I question my sanity but, I will take it one day at a time.  I have enough love to go around, just not enough energy.  That, I hope, God will help me with.  I absolutely know I am imperfect and I have a long list of things I should be doing or improving on.  Just, some days, I want to complain how I hate this time of my life.  But lest you think I am always like this, let me share what I do love about being a mom.  I also love babies and the newness and hope they bring. 
-  I love when they are cuddly and need you
- I love when I hear that little voice say "momma" although sometime I cringe
- I love that little hand in mine when we walk
- I love their laughs and smiles, meaning they are happy
- I love their pure joy at simple things
- I love buying things for them

I have so many thoughts percolating, I don't know if I got them all down.  But I just felt like sharing.

Picture, Christmas & Announcement

Carter had picture re-takes and this time I asked them to hide his wheelchair more and try to get him to smile.  They did a better job but his nose was runny and hair a bit messy.  Ah, oh well.  He's still cute.;)

Carter is on Christmas break now for 2 1/2 weeks, he starts back up on Jan 6th with Daddy.  Chris is also going back to school at DATC for a machinist program.  Proud of my boys for working hard!

Meanwhile....I have been busy cooking something in the oven.

We are having our third baby in July 2014.  We thought I was 10 weeks 2 days at my appointment yesterday, but the baby measured 9 weeks 4 days.  So my due is July 21st.  I have been very tired so far, and have been suffering with a bad cold for over a week now.  We are excited though, because I really think Sierra will benefit from having someone to play with.  I will have more on my plate because Chris will be in school and working full-time, but with family close by I'm sure I will be okay.:)  So far family is predicting a girl, which sounds cute for Carter to have 2 little Moms:)

We wish everyone a very Merry Christmas and a Happy New Year!

School Pics, IEP & Changes

This is Carter's preschool picture- not my favorite of him because he has a cute smile, but still one to keep for the memories.  We've been putting him in overalls a lot lately because they're the only pants that stay on well!

We had Carter's IEP (individualized education plan) a few weeks ago, and it went well.  He still qualifies for USDB and will attend until he is 5.  We will re-evaluate every year, and for Kindergarten we may have to consider another school.  I hope he will still qualify for USDB because of the extra time, attention and therapy he gets.  But I will be content with what he can get.  In most of his goals (compensatory, motor, gross motor, social, etc) he is now in the 1-2 year range.  His teacher and I marked him at a 7 month old level based on some tests, which is hard to swallow because he is almost 4 now.  He has come a long way though, and we are all very pleased.  I love his teacher, his school and everything they do for him.  Carter got a new driver (his 4th now) that takes him to and back from school in his wheelchair.  He gets to go up a ramp now, and it means less carrying him for me.

As far as therapy goes, his last day for horse therapy is this Friday.  I didn't sign him up for winter quarter because of the weather, long drive and the possibility for illness.  I hope to sign him up again for spring, but we'll have to see.  He enjoys the horses and sits up straight and tall.  He is still receiving physical therapy weekly at the Rehab Clinic, and we are going to try to get him a gait trainer.  We put him in a Kid Walk last week and took a walk up and down the hall- the therapist had to control his legs but he did well and looked up a lot.  We noticed his neck to back muscles are weak and have tightness, so we'll have to work on that.  It's so fun to see him so tall and standing. 

Starting in January, Carter's dad Chris will be going back to school.  We are excited and nervous for the change.  Chris already has his Associates from SLCC but wanted to go further.  He will be working full time still and school full time as well.  The Davis Applied Technology Center (DATC) is in Salt Lake close to his work, where he'll certify in machinery.  It will take up to 2 years, but hopefully faster because he's worked with machines for 4 years now.  You can start or stop anytime, they accept Financial Aid and you go at your own pace.  Really cool.  They have a 97% rating that students have a job lined up before they even graduate.  I guess machinist jobs are in high demand right now.  This means better security for us and more pay eventually, but also means less Dad around.  A lot less.  So wish me luck!

People Reacting to Special Needs

I've been thinking off and on about how people are with Carter, or react to him.  I find that I have at times been disappointed, saddened, and even surprised.  Since Carter's diagnosis, I've made new friends with similar challenges and have found those friendships to be strong because of our shared experiences.  These people have been supportive in a way that I need and am extremely grateful for.  I ran into this quote on Pinterest and loved it:

  "I am a special needs parent.  I have very special needs.  I need you to be there for me.  I need you to be there for my family.  I need you not to pity my child.  I need you to teach your children acceptance.  I need you to listen when I need to talk.  I need you to not judge me.  I need you to understand why I don't always call.  I need you to be my friend.  I am a special needs parent.  I have special needs."

I have had several people come up to me in grocery stores asking if Carter has autism.  It doesn't really bug me, but that is a pretty generalized and incorrect question.  I don't mind people asking, because it means they are interested.  I also don't mind stares if it isn't for super long, and a question follows.  I would do it myself if the roles were reversed.

What does bug and hurt me though, is when people choose to ignore Carter or act uncomfortable around him.  People in my own extended family do this.  I would much rather them ask me how to interact with him, or at least attempt to say hi.  I understand playing with him seems daunting, but he is such a happy kid.  I always tell people- if you get up close to his face and say hi and talk with him, he will hug you and smile.  He likes to play like other kids, and he does react.  I find it hurtful and disappointing that even though he's been here for almost 4 years, people still know nothing about him.  Carter will get up on his knees which is pretty tall, since he can't walk, and he'll go up to someone to touch their face or person, and smiles to indicate 'hello' or 'I want to be picked up' or for you to 'play with me'.  There have been times those people have been uncomfortable and ignored him or even moved away.  How hurtful, for a child like Carter to reach out with his limited capabilities, and have someone reject him.  Just because they are uncomfortable with him.  Yes, he can be a little rough sometimes and grab hair, but he isn't trying to hurt anyone.

The times I have been surprised and pleased is when random people ask me how to interact with him and then do so.  When people say 'hi Carter' and are sweet with him.  When random people on Facebook write me often to encourage me- that comment on pictures of Carter and say how handsome he is and special- that try to be involved.  Those are the people I truly love and cherish.  If you love my son, I will love you even more back.  A big thank you to all those that have picked him up, wrestled with him (dad), sang songs to him (mom and Mary), and more.

My point is this- if you are uncomfortable with someone in your life that may have special needs, just ask the parent how to interact with them.  They will appreciate your effort.  I am trying to grow thicker skin, but when it's present not in strangers but my own family- it is hard to get over.  Carter's teacher said it best in her report of him 'Carter is a happy boy.  He loves his musical toys.  He can activate simple switches.  Carter does give a clear signal when he wants an activity to be repeated.  Carter is a special little boy with potential if given a chance.'

New Braces & Testing

These are Carter's new braces- they go up his leg now and not just his ankles and foot.  We are hoping with more support he will want to pull to stand, and eventually walk.  This is a big focus of ours right now, as Carter turns 4 in less than 2 months.  We had to get a bigger size shoe to fit over the braces.  He still has such small feet, he's just a size 6 still. 

Carter has been doing great in preschool, I love hearing updates from his teacher.  They had class pictures a few days ago, I can't wait to see them.  His PT is having the wheelchair people come on Monday to re-fit him in his wheelchair since he's grown a bit since getting it.  They also had the communication people there yesterday to test him.  I went with Sierra to participate in the testing and learned a lot.  I don't know the name of the program they are with, but there was a PT, OT, speech therapist and then three others from a program to evaluate his needs.  They spent the morning watching Carter and how he communicates.  The main lady said she does not think he will talk or sign, because of his hand control.  Carter communicates with us with facial expressions, grunts, cries, moans, and laughter.  I think he is pretty easy to read, except for the occasional temper tantrum that I can't figure out.

They observed Carter on the swings and when they would ask if he wanted more, he would smile or swing his legs for more.  Eventually he tired of the swing, and started to try and get out.  In the classroom, the teacher has four different colored balls that each represent a different song.  Carter usually picks the yellow ball, for "If You're Happy and You Know It."  They didn't know him well enough to know if he picked it because he likes yellow, or like the song.  Or both.  I know he likes the song, so I'm sure that's why he picks it.  They decided to take the yellow ball away, and let him pick a song.  He looked for a minute, perplexed, then hit the balls away in frustration.  He knows what he wants!  They were playing with him.  I'm glad to see that spirit and recognition in him.  When they would sing his favorite song, he would bounce along and try moving his hands and arms to the motions.  Impressive.

They observed Carter reaching out his arms to be picked up, anticipating what was about to happen.  I see anticipation in him a lot, but I've yet to see him reach out for me when I pick him up.  Hmm.  Also, when Mary gives the kids options with questions, he will raise his arm some to indicate yes, or I want.  When he means no or I'm not interested, he won't respond in anyway or scoot away.  I haven't seen him do some of these things, but I bet in a classroom with more structure and consistency he is learning how to make choices.  Our goal now is to give him more choices at home, so he can communicate what he wants to do.  I am supposed to try giving him options, like with clothes letting him pick a shirt, or having him pick an activity by showing him 2 different objects or pictures that represent that activity.  We want to do more visual testing on him to see if he does recognize the picture, and can associate it with an activity.  Down the line, he could use a communication device to express his desires.  It would have buttons with pictures on them; so if he wanted a bath he could hit the button with a picture of a bath or rubber ducky.  Something like that. 

I don't give him choices at home really, I just lay out his toys and let him pick what he wants.  I pick his clothes, and with activities I know he likes certain things and when he is done.  I want to work harder at giving him choices, so he can have a say in what we do and feels like he can communicate.  I know this will be a struggle for us, but I hope we'll have success in communicating better with him than just moans or cries.  My goal is to have him walking by the time he turns 5, and using pictures or buttons too to communicate.  He is making great strides at school and I'm so thankful to his teachers for helping him grow.  It does, after all, take a community to raise a child.

St George, Summer recap & Family Pics

We went to St. George to my parents' second home over Conference weekend, and stayed in the same house all together with my parents, siblings and their families.  We were given the master bedroom which was way nice, so we put Carter in the walk-in closet, Sierra in the bathroom and us in the bedroom.  The nights were predictably rough with Carter, waking up a few times crying and probably scared.  It was dark in the closet, so we turned on a flashlight for him.  Friday night the girls all went to see Mary Poppins at the Tuachan.  It was SOOO cold that we left shortly after intermission.  It's too bad, because the play was the basis for our entire trip.  Saturday morning the guys went shooting, so we could call the trip fair.  Lol.  We relaxed at the house, went to the park where Sierra loved all the slides especially the big ones, then put kids down for naps.  After naps, we walked through Snow Canyon which was beautiful, then the guys went to priesthood and dinner while us girls watched the kids.  We watched Conference when we could with the guys running around everywhere.  Sunday morning we left for home; it was a short but fun trip. 

Carter is still in horse therapy and doing well, he loves it a lot.  He is doing well in preschool, he will stay at USDB until Kindergarten when he is 5.  His teacher loves him and enjoys having him there.  He has been sick already several times, colds and an eye infection.  Right now he has a stomach virus so I hope this doesn't bode ill for our winter.  It usually does.

We have had a busy busy summer.  We had two weddings in the Thorup family, 2 brothers in law got married (finally hehe).  Both of my sisters had baby girls and we attended their baby blessings.  My Grandpa Devey (dad's dad) passed away while my dad was at Lake Powell, peacefully and unexpectedly in September.  We went to Lake Powell and St. George for our vacations.  Carter has been busy with preschool again, horse therapy and physical therapy.  Things are going pretty well and we feel blessed.  The kids are growing and are happy and busy.  Here are some of our family pictures we took recently; more are on the sidebar.

Ta ta for now!

My Carter: Tear Jerker

For the past little while I've been writing a gratitude journal about Carter to help give me perspective.  I will share a few of these things with you:
- I love his smile and laugh, he is a very joyful boy
- I love his sweet personality, he just exudes this
- He is patient with his trials and life
- I love his hugs and how affectionate he is
- I love his baby blue eyes
- When he bites blankets or soft animals it makes me laugh
- he is so happy on horses or just going for rides in the car or wagon, simple pleasures
- he lights up when someone interacts with him closely

I have felt more tender and loving towards Carter lately, perhaps in part because I have tried putting myself in his shoes.  I don't know how much he understands about what goes on around him so that must be scary.  He has to trust us completely to do everything for him, like a baby does.  He has to deal with sickness and hospital stays, and he does so patiently.  When he is in pain or uncomfortable he can't tell us.  I just imagine this big and wonderful spirit inside him, with a grown up perspective, in this little imperfect body.  He amazes me daily by just being him.  Taking religion into perspective, I don't know anything for sure other than that he is already perfect.  He cannot make mistakes or be judged for them because he is a perfect soul.  I think, I don't know, that he chose to come on earth knowing he would have these trials.  That amazes me because it shows me just how wonderful he is.  It reminds me of a book I read and this quote, which I may have shared before.
                                "There was no pettiness, or criticism, or sarcasm or wickedness in Carter.  He has no selfishness or ill-intent.  He seems almost to be living the life Jesus taught...yet all who should have recognized godliness overlooked him.  His physical limitations...were not a punishment for him, but were designed by his own heart so that he might be an example for the rest of us....Only a large soul, far advanced, can give so much just so that others might see more clearly.  Such is a means of allowing the rest of us to place our own grievances in their proper perspective, and of showing us how much even the weakest among us is capable of giving.  We can see, or not see.  The choice is ours."  - Threads, A Reincarnation of Anne Boleyn

When I read this passage in the book, which had nothing to do really with disabled kids, it screamed Carter to me.  He is my example, and his sacrifice will be rewarded greatly one day.  I hope to be a loving mother to him, patient and kind.  So that one day when I can see what his soul looks like, what he really looks like with no disabilities, not only will I be in awe....but I hope he will be proud of me.  For I am already proud of him.

"We must be willing to let go of the life we have planned, so as to have the life that is just waiting for us."

Here we go again...

Preschool started back up on Monday and Carter hasn't been able to go.  He has a cold and as usual, it goes to his lungs and he coughs a lot.  I just don't get how his body gets sick so fast.  Sierra had a little sniffle and sneezed a few times, and it jumped to him and just attacks.  It seems every year about Halloween time, he is sick until spring.  I REALLY hope this hasn't started early.  I need so badly for him to go to school.  I need those breaks and the time to nap when Sierra does.  This thyroid thing is kicking my butt, I am always so tired and never feel like I get enough sleep.  On the weekend Chris lets me sleep in once and he has to wake me up around 10 because I could just keep sleeping.  Cross your fingers that Carter gets better fast and that I get more energy.

We decided to get a van to make things easier with Carter getting bigger and heavier.  We are trying to sell a car still, but we did buy a van just over the weekend.  It's a 2002 Toyota Sienna with lower miles and good condition.  We got a good price and are now working on getting it new tires and registered and all that stuff.  It's silver and can fit 4-5 kids.  It also has a TV and VHS with DVD hook ups.  Great for kids and long drives. 

The front row is just 2 bucket seats and the back is a row that could fit 3 without car seats.  I like to drive it it's fun to have something 'new'.  Now cross your fingers we can sell the other car!

Appointments

Carter saw Neurology and GI yesterday, his last yearly appointments for the year (I hope).  Neurology is going to slowly taper him off one of his meds because he has been seizure free for a year and a half.  Phenobarbital can cause agitation in toddlers she said and if on for 10 years or more, can lower IQ points.  He has been really agitated lately, so I hope this helps.  GI fit us in because his button keeps popping out real easy.  Sometimes he pulls it out or moves too fast that I don't get to him in time.  Other times it seems to pop out for no reason.  The doctor said some kids will flex their stomach muscles to pop it out.  If this keeps happening, he said he could put a barb one in instead.  It would have no button and would be hard to get in or out.  They would sedate him a little to get it in so he wouldn't feel the pain.  We'll see how things go.  When it pops out, his food gets everywhere and is hard to get out of stuff.

I noticed a book that I really want to read by Keva Horry, the former wife of seven-time NBA champion Robert Horry.  She writes about her marriage and also her daughter Ashlyn that had 1p36 and has since passed away.  It came out in February and I just found out about it.  I would love to read more about other peoples' experiences.  I've recently been discouraged with having a special needs child, and I had a stranger approach me downtown last weekend.  She told me about the son she lost in 1995 from seizures and how she felt like I needed some encouragement.  It was very touching and so nice.  It's not often people know what to say or do, so it really lifted me up. 

Long Summer

It feels like this summer is just dragging on, now I know why parents so look forward to when school starts.  Carter has been more difficult lately, crying for who knows what reason.  I call them his daily temper tantrums but they drive me crazy.  Nothing seems to help, he just finally snaps out of it.  He seems more needy lately and guess who always is?  Yep, Sierra.  I love my children very much but lately I feel caged in.  Even with the variety of summer activities I still feel unfulfilled and stressed out.  I'm not feeling very patient lately and I find myself wishing I had a really long vacation to look forward to.  But I don't.  It can be very hard to be a stay-at-home Mom, it truly is the hardest job I've ever had.  I should know, I've had 23 jobs since I was 16 years old.  Crazy right?  I have worked at a law firm, in human resources, fast food, restaurants, call centers, retail, etc.  Some of the highest stressful jobs out there, but being a mother tops it all.


      "You should be aware that when a young woman has many little children, it can be a very difficult time in her life, especially compared to the relatively carefree life she enjoyed when she was responsible only for herself. It takes some character, some careful planning with your husband’s help, and some “nights out,” to get you through this time still liking the idea of home, families, and babies. You can’t turn in your mother’s badge just because the going gets tough." - Harold B. Lee

It seems there is rather a lot expected of mothers and there is.  You have to cook (in my case my hubby helps with that a lot), clean, do laundry, run errands, attend appointments, pick up the many prescriptions Carter has, go to his therapy appointments, constantly straighten up and vacuum after the kids....it is tiring.  I look forward to 8 pm so bad, it is my time to relax and try to get ready for the next day.  I know people say to enjoy the time now, that you'll miss it.  That it goes by faster than you think and all that.  But honestly....I see no end in sight.  Especially having a special needs kid.  I don't see an end to the diaper changes, the baths, the getting up at night.  It just doesn't seem fair.  Most parents see somewhat of an end or progression to other paths once their kids are 18.  Possibly going to college, getting married, going on a mission, etc.  I don't know, I just feel really bummed out lately.  I feel punished sometimes which I know is immature.  It is getting harder to go out places and I find myself constantly being jealous of other families or parents with seemingly lesser problems.  I meditate with food, it's true.  It could be worse even though that isn't a good choice either.  I found out I have hypo-thyroid so that might help explain why I'm more moody, tired and overweight.  I thought when I was a mom I'd be fit and always dressed well.  Ha!  Little did I know.

Anyways, thanks for my occasional rant and pity party.  Here is a picture to keep me on track.

Therapy

Besides horse therapy, this summer I wanted to put Carter back into physical therapy at the IHC Taylorsville Rehab clinic.  Once kids turn 3 they no longer get therapy through Early Intervention but in preschool.  School is out and I wanted to keep him busy.  The therapist had a lot of great ideas and was a wealth of knowledge as usual.  This ball she used to sit Carter on and move back and forth and side to side.  It is similar to riding a horse and works on trunk control.  She suggested sitting Carter on a book or Tumble form wedge (picture below) to get him to sit forward more and upright.  She suggested tying a band around his legs at the same time to keep them straight.  He tends to sit a lot while leaning back and splaying his legs out.  She said this is a very easy form of sitting.  While he has strong abs, his back is not.  She also wanted to figure out why he isn't bearing weight still.  With his foot injury we still aren't putting shoes or anything on him, but she suggested braces that go up higher on his leg.


His hips were fine so she thought it was probably his weak ankles that were preventing him from wanting to bear weight or stand up.  So with these braces he could possibly get better and we could try a gait trainer.  I hope it's a good direction, I would like Carter to walk someday.  We also discussed getting him to crawl properly instead of scoot.  That back and forth motion can be hard to learn for kids like him.  I am hopeful with weekly sessions and horse therapy that we can get him stronger in some areas.  Once preschool is back in the fall, he'll be super busy doing that and both therapies.

Carter also saw his eye doctor, GI doc and dentist and good news there.  We see Neurology soon to discuss his meds.  Still no seizures!

Lake Powell!

We went to Lake Powell last Thursday thru Monday.  Short trip, but long enough with kids!  It took us over 7 hours to get there with stopping twice, and the kids did great with the drive.  We took a barge to the houseboat First Run at Wahweap slip.  This is a new houseboat share for my parents, and it was smaller than the last but newer and nicer.  We had AC all night as you can hook up the boat to their stuff.  We did one boat run then had dinner and got kids to bed.  Carter did....well, horrible every night we were there.  We tried to keep him quiet with toys in his own room like we do at home, but he woke up at least 4 times crying.  Chris had to sleep by him to keep him quiet for everyone else.  There are 4 bedrooms and we had him in this mini little cave room downstairs.  It has a low ceiling and one bed on each side, with curtains to keep it private.  We tried Sierra on the other side once but he woke her up.  The second night we kept him down there alone, and Sierra in her pack 'n play in one of the bathrooms.  Chris and I slept in the master, my parents in the front room or other bedroom.  We did this arrangement 1 more night, then put Carter in the front room the last night.  My brother and his friends slept on top. 

1 night was so terrible because my dad didn't keep the generator on for the AC, so it was in the 90s and we could NOT sleep.  Surprisingly the kids did, which worried me, but it was a long and horrible night.  The days were in the 100s and so hot.  Even the water was pretty warm.  To keep the kids cool, my mom brought a pool that we kept on the back deck for the kids to play in.  Carter only went in the lake once in a tube, and that didn't last long because he kept leaning forward.  Made it hard to hold him and swim.  He did great on the boat, always fell asleep right away with the rocking.  We called him the nocturnal bat because he napped so much during the day.  He was an angel during the day, but the nights were pretty terrible.  I took Sierra on a tube once, and she enjoyed being in the water or the pool.  She was everywhere so we had to emphasize to everyone- keep the doors shut!  So scary to have little kids that can move at Powell.  We had to be very vigilant. 


The best parts were tubing, wave running (a new addition with this house boat), just boating in the canyons, swimming, watching the guys rock jump and put lizards to sleep.  They do this by shooting them off the rock walls with water guns, then grab them and rub their bellies.  They fall asleep on their backs, paralyzed.  Then they return them to the water safely.

My dad also drove in the boat around us in the open water really fast, just doing circles to create huge waves.  It is so fun!  We call it the devil's cauldron.  We also had a great time playing b.s. and spoons at night when the kids were asleep.  We also floated on blow up mats and went down the slide on the house boat.  Sunday evening I was out on the wave runner with my mom, and we hurried back when we saw lightning.  Just before reaching the houseboat, the water became white caps and super wavy.  It became a very windy storm speeds up to 60 we think.  A few boats nearby us in Warm Creek were tipped over and ski boats were even halfway sunk.  As soon as it calmed down, my dad and the 3 boys went off to help people.  We ended up reuniting a mom with her son by driving her about 30 min.  We were lucky that the houseboat didn't drift away and nothing was broken.  The boys were all busy digging the anchors in deeper and tying everything up tight.  It was an adventure of mother nature.  We discovered that Sierra LOVES red vines licorice and has good sea legs.  She can walk around just fine when the boat is swaying.  So cute!

We did have an accident with Carter which was very sad.  I was vacuuming the last day before leaving for home, and Carter loves to come up and touch it.  He always gets close to it at home and nothing has happened before.  I went to move it over his head, and when I brought it back down his little foot got sucked in for a second.  Powerful vacuum!  I pulled it out and turned off the vacuum, to discover his left foot had a bunch of missing skin.  Poor guy!  He only cried a little, and we hurried and cleaned it and dressed it up.  He seems fine still but it still looks pretty raw.

We had a great time overall, good memories and great pictures.  Glad to be home though doing piles of laundry.  No sunburns either!

Horse Therapy

We finally got Carter in to horse therapy, goodness!  Thanks for a lot of donations he will be able to go all summer and then some in the fall.  He goes every Wednesday for 30 min at Courage Reins Therapeutic Riding Center in Highland, Utah.  I found them online and that they were cheaper than Park City.  Just to be clear, this isn't actual horse therapy- that would be very expensive with an actual therapist.  We would only be able to afford a few sessions.  This is called personal riding lessons with volunteers and he'll be visited by an occupational therapist mid-summer, and then go on to enhanced riding lessons which is more expensive.  His horse is named Gunner and is pretty.  I think either way, he'll still enjoy it and get benefits from it.  They took him around twice and he laughed and smiled the entire time.  So pleased!  He looked so cute in the helmet and on the horse.  I will take better pictures next time.  Now that he is out of preschool for the summer, I hope to find more activities to keep him entertained and stimulated.

Preschool and Stuff

This picture is so darling, Carter's preschool teacher emailed it to me.  He sure does love the grass!  He scoots around like a little monkey whenever we go outside.  Hence his pants are starting to wear at the knees and get holes.  So, preschool ends next week for the summer.  I hope that with going on walks daily, doing horse therapy weekly that he will be happy and busy enough.  We've had a few field trips with preschool this summer.  I met his class once to go swimming at The Lions Club, which ended up being pretty difficult with 2 kids on my own.  They weren't happy to wear life vests.  The next outing was to The Children's Garden at Thanksgiving Pointe.  Carter wasn't happy when I got there and soon fell asleep for the remainder of my visit.  Well, at least we got to walk around and Sierra had fun walking around the Noah's Ark water feature.  She didn't want to get in the water though.

Carter had a ct scan of his chest a few weeks ago- his doctors had noticed a cloudiness on one side that was in most of his xrays.  They wanted to wait when he was well and then see how it looked.  He did fine and the results came back okay.  He has some enlarged vessels but nothing too unusual.  We have been somewhat lax about putting on his bi pap at night, but we will get better again.  His sleep has been pretty good, but he does still wake up once or twice just for re-adjustment or comfort.  Carter and Sierra have been interacting a little more which is nice to see.  She is more gentle with him and they play some together.  I caught this picture while we were driving.

Carter has been moving super fast and seems to be looking at me more, and even scoots up to me to say hi.  He is playing more with toys and seems to catch on to how things work fast.  He knows right where things are, like at Grandma's he scoots right to her basket of toys.  He seems to like higher pitched noises and songs, they make him laugh.  This summer will be busy with two new nieces, a wedding, Lake Powell, St. George and more.  So I will try to keep you updated on the madness! 

Thoughts on Differences

For awhile I have been thinking about the differences between my children.  I thought perhaps one day I would write a book on the funny and frustrating differences between special needs and "normal" kids.  For now, I think I'll just share a few I have noticed the most.  Carter is about 3 1/2 years old and has 1p36 deletion syndrome.  Sierra is 1 years old and a typically developing child (better word than normal).  The first difference I've noticed is that Carter loves the vacuum or when I sweep- as a baby he hardly even startled at the noise.  He loves to follow me clean and touch the vacuum or broom and laughs.  On the other hand, Sierra screams and cries and is terrified of it.  That was a new one for me- now I vacuum when daddy is home or Sierra is asleep.  The second difference is their overall health- Carter can't even go swimming without getting sick and us all too.  He isn't swallowing water, but the germs and the coldness must attack his weak immune system.  He was relatively healthy as a baby, but has now had RSV, pneumonia several times, stomach bugs and it seems every possible cold there is out there.  Sierra is very healthy and most of the sicknesses seem to have passed her by or affected her very little.

The third and most obvious difference is that Carter doesn't eat by mouth and hates having his teeth brushed.  Sierra on the other hand loves to eat, everything, all the time!  And she is okay with us brushing her teeth.  Of course, Carter did eat orally until he was about 1 1/2 years old, it's hard to remember that though.  Fourth is also obvious, but Carter is still like a baby.  He isn't able to crawl, walk, run etc.  I was worried when having another child that I would have twins, and in ways it has been like that.  I still have to carry both to the car to buckle them in their car seats and get them out, I have to change both their diapers, feed them both, etc.  Sierra is walking now but still loves being held and carried. 

Fifth difference is how their personalities are.  I know this could be just the fact that they are different sexes, but also I think their genetic makeup has a lot to do with it as well.  Carter was and still is a very easygoing, sweet and affectionate boy.  He was an easy baby (other than the NICU experience) and wasn't very attached to me.  He was OK when I left the room or did my own thing, he didn't need a lot of attention or to be held a lot.  Once his seizures began and then stopped that also affected his personality.  He is more aware when I leave the room, but he doesn't cry.  He follows me or just plays with his toys.  He is more social and very affectionate with people, giving hugs often.  Carter just overall has a very patient, tender and loving spirit about him.  He wasn't always easy (no kid is) but overall a very easy child.  He plays with himself for long periods of time.  On the other hand, my Sierra...oh boy, does she tire me out.  She is very active, social, outgoing, feisty, spirited, smart, busy...the list goes on and on.  She is emotionally needy, following me everywhere and crying when I leave the room.  She needs a lot more attention and physical touch. 

A lot of Carter's doctors have told me that parents with two children like me, often say having the second child was like having their first.  The experience was so new and different- and harder in many ways.  When it comes to medical stuff, Carter is harder for sure.  But feeding-wise and overall daily stuff, Carter is so easy.  In many ways, having Sierra has been like having my 1st child.  I have a lot of questions and I feel more pressure in raising her.  She soaks everything up like a sponge so I have to be careful what I say and do, whereas I tend to be more lax around Carter.  I am sure he understands a lot more than I know, but since I'm not sure I am not guarded around him.  I am sure some parents can relate to this out there.  I tell people my "normal" child is much harder than my precious 1p36 angel.

I have been wanting to also write some kind of poem or lyric about Carter and Sierra but I am not that talented.  Everyday of motherhood brings many challenges and trials for me.  I do have moments of joy that make my heart want to burst.  I think having Sierra has given us tremendous satisfaction and more gratitude, because when she does something new, it is just incredible to us.  I have watched her roll over, crawl, sit up, clap her hands, high five us, walk, and play peek a boo with tears in my eyes and a bursting heart of joy.  At the same time, I always look over to where Carter is and feel a little twinge of sadness.  He is so sweet and I want so badly for him to do all those things as well.  I believe he will, it will just take longer.  What many parents take for granted, I have been able to have that gratitude and joy intensified because what seems so easy for Sierra and happens in just a day or days, has taken or will take Carter so much longer.  Months.  Years.  His therapists told me it would be incredible for me to see a "normal" child do all those things.  And it has been.  I hope I never take it for granted either.  Anyway, just a few ramblings from me today.  Thanks for reading and always feel free to share your thoughts.

Sierra is 1!

Sierra turned 1 on April 25th and she had a princess party.  She is so beautiful and we had a good time with family.  She is walking some and babbles a lot.  She is smart, funny, feisty, social, busy and a momma's girl.  We love having her in our family.  She is getting sweeter and softer with Carter but they both mostly play with themselves still.

Carter made it to preschool everyday last week, which was a miracle.  He's never made it all four days yet because he has been sick so much.  It was a blessing!  He is enjoying it and doing well.  This Wednesday they will start swimming once a week.  We had a fundraiser for Carter and raised enough to do several horse therapy sessions.  I look forward to seeing what he thinks about it.

Fundraiser

This summer I thought it would be fun and good to try hippo therapy.  This is a kind of physical therapy with the aide of a horse.  They do it up in Park City as well as other places in Utah.  It's a bit of a drive and an expense that insurance doesn't cover.  If you are interested in helping make a donation, visit the link below or my Facebook page.  Thanks so much!

http://www.giveforward.com/fundraiser/lm62/horsetherapyforcarterandmore

Losing it at the ER

I know this won't be an uplifting post, so this is not for the faint of heart.  I like to use this blog to vent and express my feelings honestly and sometimes bluntly.  I have never pretended to be a super Mom even though people keep telling me that I am.  They have no idea, they just assume I am.  I was given this life without a choice, and I have had to deal with it the best I can.  And lately, I haven't been handling it so well.  Carter had RSV and pneumonia just 3 months ago and missed Christmas with us.  He was life flighted and spent 9 days at the hospital.  He and I got sick more times than I can count after that, and just a few weeks ago both of us got strep.  I ended up in the ER myself because I developed like an abscess and swelling so I could hardly breathe.  I am still not fully recovered- I can hardly taste food and my lymph nodes are still swollen.  Anyway, this caused us also to miss our anniversary celebrations.  They were postponed for over a week and it was only half as long.  We now have medical bills trickling in that I will have to pay over time.  All of these frustrations have left me emotionally and physically tired.  I also feel I have lost a lot of faith in God and prayer.  I know it might sound weak, but I can only take so much.

Being Carter's mom has been THE hardest thing I have EVER gone through.  I have been divorced before and lost close friends and a wonderful Grandma.  But this has tested me above and beyond.  Everyone says "this too shall pass" or "we'll pray for you" or "you are amazing."  Let me be clear.  I am not amazing.  It is my wonderful husband Chris.  He is steadfast, patient, immensely strong and holds me up when I would have fallen many times.  Our families have also lended support and some friends.  But the sicknesses won't stop coming no matter what anyone does.  I know it's been a terrible winter for many and sickness has been rampant, but I feel especially hit by this.  It's hard to constantly be tested and miss out on precious sleep.  I am tired.  I want to be happy- better yet, I want Carter to have a strong immune system and to be strong and be healed.  I know that won't happen, and it makes me so sad.  I have little hope for the future, in this bleak moment.  I know I am choosing to fuel my anger/sadness/ pity party but I need to once in awhile.  I have wept more tears in these 3 years than my whole life.

I often think selfishly and how this all affects me and my baby Sierra, but I tend to miss that Chris and Carter are suffering too.  An empty pot can't give to others without first being full itself or at least partially.  I know many have helped and have wanted to, but it's not enough.  I am painfully aware of my shortcomings as a mother, and only hope one day Carter can forgive me.  I am prone to depression and anxiety and am a bit obsessive compulsive.  I like routine and order and cleanliness.  Today, Carter was asked to go home from preschool, because his eyes were goopying green stuff, he was breathing fast and had a fever and cough.  I was at a friend's and had to cut the visit short to pick him up, it's a 30 min drive, and brought him home.  He was breathing fast, had fevers off and on, goop in his eye and increased heart rate.  I also had to drive almost the same route a few hours later for my dentist appointment, but was told upon arriving my appointment needed to be canceled.  I was pretty mad- I also missed out on going grocery shopping which I love to do.  My wonderful friend and neighbor, a nurse, came over to check Carter out a bit later, and suggested like we thought, that he needed to be taken in.  After over 4 hours in the ER and just a chest xray which was not conclusive, as usual, and watching them poke my poor Carter in the hand for an IV when it never works the first time, I had it.  I blew up on the nurse, even though I know it wasn't her fault, but I couldn't take it anymore.  I was sick of waiting, answering the same questions over and over, and waiting for nothing to happen.  They are so SLOW!

Because of his history they were reluctant to let him go home.  My husband suggested firmly but kindly I go home and sleep, and here I am now.  My husband has to go to work in 5 hours, but he is still at the hospital with Carter waiting with him for a room.  I am sorry for not being stronger, but I know my limitations.  This anger inside me has made me a bitter person.  I pretend to strangers or acquaintances that I'm okay, but I'm not.  I don't know what to do anymore.  I feel like I am circling the cycle of grief or acceptance, only to stay on anger and short burst of elation.  I don't know how to accept my life and trials with poise.  I know there are many in similar or worse situations, and that is what makes me even sadder.  I have much empathy for people and feel their pain deeply as my own.  I often find myself in tears over posts on blogs or Facebook because life is just so hard.  For so many.  So I don't pretend my life is the worst, it's just so hard.  I know spring is here but I am not feeling the joy.  I hope the warm weather will help Carter be stronger, but I doubt it.  I don't want to ask for prayers for me, but for Carter.  He is a sweet, innocent boy that didn't ask for this.  He has endured his life stoically, bravely and patiently.  He is amazing and an example to me.

Conference/ Sickness/ Anniversary

We had parent/teacher conference for Carter's preschool and it went well.  I kept thinking, what is there to really talk about for a 3 year old.  But the teacher talked about his day, the goals he was working on and where he was at.  It felt good after talking to her and reinforced to me that he is in the right place and fits right in. 

Carter and I both got strep throat this week and it has been beyond miserable.  I have never had this kind of pain in my throat or neck before.  Carter seems to cough a lot but otherwise handles it fine.  I am dying here and have been so miserable.  We are on antibiotics and no longer contagious, but I don't know if I'll live to tell the tale.  I have been on extremely high doses of pain killers and doing everything I can and nothing seems to help me.  I seriously feel like I need to be put in a coma until it's over.  My throat hurts so bad and my neck, like whip lash and sore throat.  I can't talk very well, haven't had solid foods since Sunday, and haven't slept more than 4 hours a night in 3-4 nights.  I am at the end of my rope.  And to make things oh so better, our 4th anniversary is today.

We were supposed to go out of town for a few nights to get away and sleep.  Doesn't look like it will happen unless a miracle comes my way.  I am of the Mormon faith, also known as LDS, but it hasn't seemed like my prayers are being answered.  How come when we need help, especially in a painful illness, it never seems to come?  We are in a generation where we want everything now, but with an illness, it makes sense!  I'm sorry for the negative post, but not everything in life is cheery.  One thing about being a parent to Carter, is that I am constantly getting sick with something.  My body is worn down and I don't know how much more I can take.  I have been sick at least 4 times since Christmas, all different things that lasted a long time.  It doesn't seem fair to be a parent to a special needs kid, not getting enough sleep already, and then getting sick constantly on top of that.  Not fair at all!  I have had to carry both kids around and it isn't helping me heal.  Having 2 babies, basically, is extremely tiring.  Some days I wonder why I even had kids? 

Sierra is 10 months old now and is a delight (really).  She doesn't seem to get sick with what I do at all, or not as bad.  She is strong, smart and beautiful.  I worry when Carter and I are sick that she'll get sick too, but she usually stays strong and healthy.  Grateful for that at least.  She is a handful but gives back in so many ways.  Smiles, imitating, walking around a coffee table, things that just make my heart melt.  I probably make it noticeable that I favor her, but I don't think I can compare my kids that way.  They have talked about having favorites on the news and how it can be damaging.  My relationship is just different with her I think.  She is more rewarding, fun and so smart.  I love Carter of course, he can be a challenge though.  When he hugs his sister or me or Chris, it does melt my heart just as if Sierra was doing something clever.  I think every kid holds a different place in a parents' heart.  Thoughts?

Preschool

I just think this is a really cute picture of Carter asleep on his sister's unicorn.  Carter has been doing great at preschool!  I am so pleased to hear it.  His teacher says he just loves being there and he makes them all laugh.  Most people that meet Carter, and that aren't uncomfortable or awkward around him (their loss), say he is delightful and has a great laugh.  The driver says he laughs to school and back, and the nurse says he laughs when she feeds him.  The teacher sends back notes everyday and pictures with announcements weekly.  I have a binder with a collection of the alphabet in braille with a felt picture; they are on J now.  Most of the kids have some sort of vision loss since it is the school of the deaf and blind.  Carter can see but he is still included in what they do. 

He is in a stander everyday for as long as he'll do it, and he loves to play with balls.  They have parent/teacher conference next week which should be fun.  I just couldn't be more pleased with how he is doing.  I'm sure he loves the interaction, variety and people to stare at.  This is the first week he's gone all 3 days and no sicknesses!  Hallelujah!

Dentist, Bi Pap, Preschool and Primary

Carter came home the day after Christmas, and let me tell you, getting his bi pap was ridiculous.  Since they call it a ventilator on a bi pap setting, I guess it's hard to get.  Apria was giving us heck to get it and we had already waited weeks, so the nurse manager finally went with Petersons for the equipment.  I wonder if we could have had him home for Christmas if they had switched companies earlier.  He has been more touchy and fussy since being home- he doesn't like me laying him down or touching him much unless it's deep pressure touches or holds or hugs. 

Carter went to the dentist yesterday after like 8 months, and he has two cavities! We were all surprised, trying to figure out how since he doesn't eat by mouth.  All we could think is that he throws up sometimes and has reflux, so perhaps the bacteria spread then.  He does have a lot of tartar around his teeth making them look yellow, but the dentist thought his gums and everything else looked great, and said the tartar can serve as a protectant or sealant.  He grinds his teeth a lot, but they also said his teeth look fine still.  So next week, I have to take him back and they will put him in a papoose, poor thing, and a restraint on his head so they can fix the cavities.  I feel so bad for him.

The bi pap is not my favorite, but neither was his feeding tube when we started out with it.  Carter's bi pap is a relatively small machine that we just put on a shelf, and we put distilled water in it for the humidifier.  The mask is small and just covers his nose, and we try to slip it on when he is asleep or close to it.  Then we turn on the oxygen to give him extra support.  So the bi pap delivers pressure to keep his airway open so it doesn't collapse or "obstruct", and then the oxygen gives him extra breaths per minute.  He was doing pretty well with it until the past three nights.  He wakes up once or twice trying to get it off, and some nights we give in because we are so tired.  He still seems tired and mellow during the day, so I'm not sure how much better sleep he is getting.  I follow up in the bi pap clinic next week so hopefully the card in the bi pap machine, which can show his sleep patterns and how well he is sleeping, can tell us how he is doing.

Carter has been to preschool four times now, and the teacher and nurse said he is doing great.  The van picks him up at 8:20a.m. and drops him back home at 4p.m.  The school is USDB which is Utah School for the Deaf and Blind.  He has six other classmates, one nurse, one teacher and one teacher's assistant.  They send a notebook back and forth everyday with notes on how he did, and a handout with goals and pictures once a week.  I treasure looking at these handouts and seeing how happy he is.  Once the van gets to the school, the teacher is right there to meet them with a wagon where she puts four kids in and wheels them up to the portable classroom.  So I send Carter with a hat and coat to keep him warm.  And he has also had to wear shoes, which he isn't too sure about.:)  We had an extra car seat, so they keep that in the van to transport him with.  They don't want his wheelchair since he doesn't use it a lot, so we keep it at home.  Right now he is going on Mondays and Wednesdays, but in a few weeks we'll go up to Monday, Tuesday and Wednesday.  And then eventually to all four days a week, M-Thursday.  I send him with his feeding supplies in his backpack, and diapers, wipes and food.  They keep his medicine in a fridge locked for the nurse.

A lot of people ask me if I miss him, and I do.  But honestly, Sierra keeps me so busy that the day flows by so fast.  She is crawling all over, pulling herself up, babbling and following me everywhere.  No peace for me anymore!  I tell people that Carter is much easier than Sierra in the day-to-day care, because he is so mellow and just plays with his toys. 

Carter is 3 and it's January, so he starts Primary this Sunday.  He also has a welcome party tonight to meet his teacher and see where his classroom is.  It's crazy how many changes are happening for my little ones.  Carter in school and primary, and Sierra crawling and soon to be walking.  I am one busy momma!