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!