Conversations with Zuri

-"Mommy, I want some milk...milk, please."
-Handing Zuri a sippy cup of milk.  She takes a drink and starts shaking it around.
-"Zuri, stop."  She ignores me. "Zuri, stop shaking your milk."  Still no response.  "Do you want me to take it away from you?"
-Very innocently, "yeah," and hands me the cup of milk.

Oh yes, we couldn't stop laughing.

Cleanliness

You know you are in trouble when your three year old suddenly becomes quiet.  Zuri's new favorite thing to do is wash her hands.  Not a bad thing, but she is certainly going through the soap!  With Kai we have a ton of hand sanitizer, and after she washes her hands she has to put on hand sanitizer--and, she has to do it all herself.  She is a funny kid.  It is fun watching her grow into her own little person.

She is so cute around Kai.  She loves to watch him and play with him (as much as she can).  She loves when he holds her hand.  She calls it "squishing."  She watches over him and informs us if he is awake and wriggling or crying.  About a week ago, she was in her room "taking a nap" and his monitor went off.  Zuri had just been playing with her dolls and making up the cutest conversation (which I can't remember right now) but she heard the monitor in her room and called out "pause it!  Mommy, pause it!"  I laughed so hard. 

The Nays Have It

So, it looks like the blog will remain public.  Thank you for your votes and comments!  I love feedback and it is fun to find out who is reading the blog.  :-)  I know I set the poll to run for a month, but I came across something else that has swayed my opinion on keeping the blog open.  

A friend on facebook posted a link to this article the other day: http://www.salon.com/life/feature/2011/01/15/feminist_obsessed_with_mormon_blogs.  Very interesting.  I have been thinking about it ever since.  On one hand, it is a compliment to "Mormon Mommy Blogs," and I am proud to be part of a trend that I didn't even know about.  A celebration of motherhood.  A way to reach out in the world.  A way to connect with others. 

What is it about our crazy, hectic lives that draws readers so?  The blogs I follow, I follow for specific reasons.  Most of my blog list are friends and it is fun to keep up with their lives and see how things are going.  I also follow blogs which are give ideas--such as cute hair ideas for girls and recipes.  Then there are the two blogs I follow simply because the author is an inspiration to me.

You see, our little family has been turned upside down in the last few months.  We had doctors giving us the worst case scenario from the beginning.  If your son survives birth....his brain may not send the signal to his body to breathe....marshall-smith syndrome...moderate to severe mental retardation...found a mass that could be a tumor...moderate to severe hearing loss...will be only able to say a handful of words at most...average life span is three years...respiratory illnesses....eventually have to have a ventilator...  It is so easy to get mired down in the negativity and lose focus.  Knowing that there are others out there who have/and are going through rough (if not rougher) times, and learning how they have coped helps me.  I am not going to pretend it is easy.  I am not going to sugar coat everything.  I have my good days and my bad.  I make many mistakes but I keep trying.  Parenting with normal, healthy children is not easy, now compound it.  We all have trials and days where it we wonder how we are going to make it through the day, and tomorrow seems just as bleak.  But, we make it--with the help of the Lord, and friends and family, we make it.  The rewards are infinitely more satisfying.  Life takes on a new meaning when you have children.

So, if my blog can help others, even in a small way, then it is worth keeping public.  Not even a week has passed and I already have nine votes for "no" on the poll.  So, to you who follow our journey, I say thank you and the blog will remain public. 

Learning Sign

Thursday we began learning American Sign language so that we can begin communicating with Jeremy.  It is an exciting process, even if we won't see the results for several months.  We have been dealing with an early intervention program called Kids on the Move.  They are help us with such things as Kai's occupational therapy and learning how to sign.  It is a great program designed for kids before they reach school age.

We have a busy week ahead of us.  We have an appointment everyday this week, which is very stressful.  I dread the days in which I have to take Kai to appointments.  He does not handle getting out very well at all.  Wish me luck this next week--I need it!

Our first stop this week is Audiology.  It was a three-hour visit, in which they will did one last ABR in each ear before getting him fitted for hearing aids.  The goal is to get him hearing most--if not all--speech sounds.  He had his molds done for his hearing aids today, and we will go back October 4th for them!  I am so excited to have him be able to hear us!  I cannot wait!

Kai did really well in the car today--both to and from the appointment.  It is the first time that I have not had to pull over and suction him/fix his oxygen and trach nose.  Hopefully the rest of the week will go as smoothly! 

Inspiration

It isn't as bad as you sometimes think it is.  It all works out.  Don't worry.  I say that to myself every morning.  It will all work out.  If you do your best, it will all work out.  Put your trust in God, and move forward with faith and confidence in the future.  The Lord will not forsake us.  He will not forsake us...If we will put our trust in Him, if we pray to Him, if we live worthy of His blessings, He will hear our prayers.
                               --President Gordon B. Hinckley

We have that posted on our fridge, and it is a comfort in during the rough times.  No matter how hard things may seem now, things will get better.  I have faith in that, and faith in the Lord.  I know that little Kai was placed with us for a reason, even if I can't understand why, or think that I am completely inept.  I have learned much over the last few months.  I have been faced with challenges that I never imagined.  My eyes have been opened.

I have good days and bad days.  Days where I feel so completely inadequate and spend the day in tears.  I have days where I am stronger and know that I will get through this.  I wouldn't be able to do this without J by my side.  He is strong when I am weak.  He has his times when he struggles as well--and luckily, those seem to be the days that I am strong.  The hardest part of the whole situation is the fact that J and I don't have any time outside of the house together--we don't have the luxury of loading the kids into the car and go to a friend or a relative's house.  We can't go to the grocery store together.  We just can't get out.

I have a mantra that runs through my head on the tougher days.  This too, shall pass.  I don't know how, or when, but it won't always be like this.  We will be able to go camping, hiking, for walks, to the store, to the movies, to visit friends and family.  Other people have special needs children and they make it work.  We will too.  Somehow.

Labor Day weekend was rough for us.  It is usually a time when we go camping or spend time with family.  J took Zuri to the park, and Zuri and I went to a birthday party.  We are an active family and being stuck at home has been hard for us.  We have had to adapt and we keep an eternal perspective.  This too shall pass.  I look to the quote above from President Hinckley, and it gives me comfort.

Another source of inspiration is a lady named Stephanie Nielson.  I am sure many of you have heard about her.  I first read her story in a magazine while at a prenatal appointment.  This was before we learned anything was wrong with Jeremy.  She is from Utah and was in a plane accident with her husband and the pilot.  The pilot died in the crash, and she and her husband survived.  Stephanie was burned over 80% of her body and has had extensive skin grafts and reconstruction.  The amazing thing is her attitude.  Instead of letting this take away her life, she has embraced life more fully and has been quite the motivational speaker.  She has even been able to become pregnant again, and has been featured at many women's conferences and on Oprah.  She has been featured in many magazines and has even written articles.  I follow her blog here: http://nieniedialogues.blogspot.com/.

One thing I love about her is that she is real.  She writes about the bad days as well as the good.  She has had a rough pregnancy and is not afraid to let you see her.  She laughs, she cries, she makes fun of herself.  She makes the best out of a rough situation.  She truly is an inspiration, and seeing her situation makes ours seem a little better.

On a different note, this blog started out as a way to let family and friends keep up with our lives since we live so far away.  It has become so much more than that now.  I have considered on many occasions making the blog private, but I also don't want to take away from those who read this blog either.  I know more than six people read this, but that is all I have in my followers section.  I love having readers and I love comments.  As this blog becomes more--details all that we go through with Kai, I wonder how "public" I should keep it.  I already have it unlisted so you can only find it if you have the blog address itself.  Is that enough?  I am going to put a poll up and based on the results (and comments) I will decide which way to go.

So, dear reader, since this blog was originally made for you, it is up to you.  Vote or leave a comment.  If the blog becomes private, all I would need is your email address to send an invitation and you will be able to see the blog just as you do now.  :-)

Bath Time and More

J had Kai sitting up in the boppy the other day and for a short time he was really enjoying it.  He was being so cute looking around and we were able to get this adorable shot.  He was sitting straight and then just before the shot he decided to move and angled his neck just as the picture was taken.  When we tried to straighten him again for another try, he decided he was done.  It is really hard to get a good picture while he is awake because he moves so much.  He is getting stronger and starting to lift his head more.


Kai has found his hair!  I caught him twirling his hair with his fingers and looking oh-so sleepy.  If we hadn't grabbed the camera and gotten some pictures, he would have fallen asleep playing with his hair.

We have had some questions about how we bathe Kai--ie do we have to give him sponge baths?  The answer is no.  We are able to bathe him just as a normal baby; we just have to make sure we don't get water into his trach because it goes straight to his lungs.  When we give him a bath we have the trach nose and the oxygen attachment, which covers the trach opening so water is not so easily able to get in.  Obviously, we cannot completely submerge Kai, but you wouldn't do that with an infant anyway.

Cost Benefit Analysis

Yesterday was a bittersweet day for me; it was my official last day of work.  I am now officially a stay-at-home-mom.  I will miss the people I work with and even miss working, but I am not superwoman and with the care that Kai needs, I cannot do it all.  Work was originally a reprieve--a way to get out of the house, but it has become an additional stressor this last week.  I was supposed to work all week and because of Kai's PICU visit, I was unable to work Monday and Tuesday.  Wednesday was end of the month, and the company updates their systems at that time, so I couldn't work.  Thursday was another appointment up at Primary Childrens, which was only supposed to have lasted an hour but I was there for over two and a half hours.  Because of that, I hit traffic on the way home from Salt Lake and ended up being two hours late for work.  The added stress that work creates is just not enough to justify working.

Additionally, the person that we have had watching Zuri and Kai while I work won't be available for much longer.  We knew she would only be a temporary fix while I put in my last two weeks.  I was going to work a regular shift on Fridays from 8-5, since J doesn't work Fridays, but when we weighed all the pros and cons, working just didn't come out on top.  We can't just have a regular person watch Kai because they have to be trained on how to care for him and be willing to care for a child with such needs.

As the work day ended yesterday, my boss came up to me and told me that I have been an excellent employee and that if I ever need a job again to call him.  Because of the work that I have been doing, they are going to implement a night shift.  It was so nice to hear how valued I am to the company.  I have been grateful for my chance to work there, especially since they have been willing to take me back twice now (the first time after we got back from Georgia, the second time after Kai was born).


On the other hand, I am excited to be able to be home with my little ones.  While I enjoy working, I have felt the weight of me being away from home.  It has been hard to be away from Zuri these last two years.  I will enjoy being home again.  Zuri is getting older and will start preschool next year.  How fast time flies.