In a FOG...

So I hope that I can look back at this post someday and be like, "Wow, I've come a long way."  I rarely complain on my blog, but I thought that I would give my husband's ears a rest this time and try to sort through these tough emotions that I have been experiencing lately.

First off, let me give you a short and sweet (or not so sweet) update on our life:

*  We LOVE our new place here in Omaha. We live in a town home development called Village Green.  It is super close to the Omaha Zoo and the Botanical Gardens.  In fact, the gardens surround the entire place...which means there are snakes, but we won't go there in this post. Gross.

The people here are absolutely wonderful.  Most of the families are in the same schooling situation as us.  I can already tell that I will have the best of friends here if Jett and I ever make it out of the house...you might think I'm joking, but I'm serious!

*  Jett was hospitalized last week at Omaha Children's Hospital.  He has been having longer and more frequent seizures to the point where he becomes incoherent and we are unable to break him of them. As it turns out, they supposedly aren't seizures, but rather part of his movement disorder, called Chorea.  Awesome.  Oh, and there's no treatment for infants his size.  Even more awesome.

Jett's room was on the fourth floor and it had an amazing view

The hospital stay was actually quite pleasant as far as hospital stays go.  Jett didn't have to be hooked up to any monitors besides when he was undergoing an EEG and we got a hospital room all to ourselves.  Hey, you gotta celebrate the small things!  One part of the stay that maybe wasn't our favorite was Jett's 80-year-old neurologist whose bedside manner was HORRIBLE.  She was so bad, in fact, that I complained to the hospital staff, and demanded that we get neurologist that I had originally asked for.

Even Jett was mad after the visit from the 80-year-old neurologist...he tried punching his iPad

* Once Jett returned from the hospital, he had a good couple of days.  I feel the need to report these because they occur very far and few between.  Here he is sunbathing, while I painted some baseboards.

This past week has been a trying one to say the least. Thus, the need for this post.  I had to leave the house tonight and seriously debated about whether or not I wanted to come back.  (Of course I came back) Jett has been experiencing extreme amounts of pain every single day.  He gets so uncomfortable to the point where I can't even hold him.  It is so frustrating that we can't do a single thing to comfort him.  As a mom, you are supposed to be able to do that for your child.  I wish more than anything that I could slap a bandaid on everything and kiss it better.  Unfortunately, this is not the case with Jett.  His little body is dependent upon medication, which most of the time, doesn't even end up working.  Our day revolves around how he is feeling and it can be very unpredictable.  This particular picture was taken tonight.  He finally fell asleep after crying and thrashing around non-stop for six hours.  Can you say exhausted??  

We are unable to travel in the car without someone else there.  The ONE time I did this, Jett ended up thrashing around so bad in his car seat that he cut his finger.  When I finally got to him, there was blood all over him.  My dream one day would be to be able to take him in the car to simply go grocery shopping or to a park.  Each day, we are lucky if we get out to go on a walk.  Luckily, we live close to some amazing people.  I don't have to go far to be able to talk with friends, which is SUCH a blessing.  They probably don't even know how important that is to me!!

Lately, I have been in a fog.  It's a fog where you feel like you can't breathe or think.  My life now revolves around Jett and his needs.  I can no longer focus on my previous goals and ambitions.  I know what you are all thinking right now..."Of course you can, Tennille!"  Well, I'm here to tell you that I am a pretty motivated and ambitious person and it is absolutely impossible right now to even think about showering, let alone anything else.  Now I know what you are thinking again, "Oh all moms are like this."  Yes, that may be true to an extent.  However, after administering about ten doses of medication a day, changing feeding bags, venting Jett's stomach numerous times, transferring stomach acid from one port to another, suctioning out his nose and throat, making a gazillion phone calls to

doctors....I.AM.TIRED.

This sweet little man of mine is different.  His poor body isn't compatible with normal things in life that we all take for granted like being able to eat or being able to sit up.  I love him with all of my heart, but this week I think I really have come to the realization of his future.  It is hard to think that I won't be able to ride bikes with him or watch him run through the sprinklers.  To put it simply, it breaks my heart.  

Someone gave me some wise advice today.  They said that sometimes you have to mourn the person that they will never be before you can find peace and joy in the person that they are.

So I think that I am in mourning a little bit.  I yearn for Jett to be able to smile back at me or just sit on my lap comfortably while we look at books.  Instead, he fights to be out of pain all day long.  I have heard (from other PCH moms) that the first year is the hardest with a child battling this condition.  They say that after the first year, things start to look up and a lot of the pain goes away on its own.  I certainly hope this is the case.  I truly hope that Jett can find a tiny bit of peace and joy while he is here on this earth. I would be the happiest mom in the world!!