Tuesday, July 6, 2010

Ugh - one of those days.


That’s how I feel today.  I feel overwhelmed, over-worked and exhausted.  I find that I go, go, go – I don’t complain about it much because I like being busy, but right now, I feel like crying.  I feel like letting it all out, so here goes.

Here are the small things  in bullet points (cause I am a list-maker..remember J ) that are constantly on my mind and causing a little frustration
·         Jack is cutting 2 teeth at once…not so much fun
·         Jack is trying sooo hard to sit up, but his muscles give after a few minutes
·         Jack is trying sooo hard to finger feed and pick up things, but his hands are so tiny and his grasp so weak.
·         Jack looks as if he is trying to wave more and babble more, he looks at you with such intensity, but then the disconnect happens.  The disconnect between the brain sending the signal to the hand and the hand going up.  Sometimes the disconnect isn’t there and other times it is all too obvious.
These are times when I really want to yell at that extra chromosome. I want to say.. “leave my son alone!”  Let him grow like he should, let his hands get bigger, let his muscles get stronger.  LEAVE HIM BE! It’s so hard to see him try so hard only to be defeated.  90% of the time I feel like I am his cheerleader, encouraging him and getting excited when he does something or tries to, and then there are times when I am just so sad for him.  I am sad because I can see that he wants to, but his body limits him and his brain limits him.  And I hate limits.  And we work against those limits.  But it’s hard.  It’s so very hard sometimes.

When it’s a broken foot limiting someone – you know that time will heal it.  You know that one day that foot will be just fine.  Well, Jack doesn’t have a broken foot that can be repaired.  And I have no clue what the future holds.  I know that he will be happy and be loved and that we work diligently to give him all the things he needs and we will push him to do great things and to test those limits and hopefully tear them down…but you still don’t know.  So hard.  So painful.   I hope Jack exceeds all odds and changes the world with his smile. I hope he falls in love one day and I hope he goes to college.  I hope he says, “mama” audibly.  But I don’t know.  None of us do.  So we hope.  And we pray.  And we continue to love without limit.

The thing that is the MOST bothersome to me right now though are Jack’s recurring-high-no-reason fevers.  For the past 6 weeks, Jack has had 6 fevers.  Fevers that are 101-103 degrees.  They last for a day or 2 and then are gone.  They have no other symptoms other than slight fatigue with them.  We have had blood work done and it’s normal, which gave me comfort last week.  But then this past weekend, another fever.  I am keeping a journal and our pediatrician wants to wait a few more weeks before we run more tests and I want to tell him to Kiss my !!  I don’t really like our pediatrician. He is more of the “let’s wait and see type”.  And I don’t like that. It has not bode well for Jack in the past, so why would it now?!  And 3 times that he said “let’s wait and see”..Jack ended up in the hospital.  I would switch, but I sort of think this is how docs practice now.  They just don’t do a good job.  They don’t go the extra mile.  They just show up…look at kiddos and go home.  I’ll save my post on apathy and pediatricians for another time. 

I keep telling myself that these fevers must be teething related as Jack has cut 2 teeth in the past 2 weeks, although everyone tells me that teething fevers don’t get that high.  Then what could it be?  Jack has an incredibly high pain tolerance and I am SOOO worried that something is wrong and we just don’t see it because he doesn’t feel it.  Please pray for our Jack.  I hope these fevers are due to teething, but if something else is going on, I just want to know. I want to know how to help our son and get him well.  I am planning to start hunting for another pediatrician…I hope I find someone who takes me a little more serious and who cares about my child’s life a little more.  Wish me luck.




  1. "Hugs" to you, first off! I hate days like these when worry takes over and it's impossible to think of anything except your baby. The thing about our children is that it takes so much more effort to move then other children, they are working twice as hard. Jack is trying to break those limits and he will, and he will have worked harder then any child you know!

    I was wondering if your PT has ever taped his tummy? Ours taped Lucas's and it really helped his trunk.

    I think you are right to worry over his fevers and to look for a new Doc. I am in complete agreement on the quality of care now days. I don't particularly like our Ped either but I am limited because of where I live.

    Hoping Jack (and Mommy) feel better soon!

  2. I know it is hard not to worry but I think we worry about any of our kids,that's a parent job :) Jack will do all of these things and you will see him reach so many milestones, enjoy each one. he will do them in his time. even though it is difficult to see how hard it is on them just keep working with and it will come easier, he will become much stronger. As far as your ped. I hate to hear that, we have a great one and is aggressive when need be, do you have other good ones in your area. You all will be in my thoughts and prayers. I hope y

  3. Hate those days! I hope you can switch docs soon if you feel like you are not getting what you need. It is an important relationship, the one between you and your pediatrician, so you have every right to be concerned about it. As far as the fevers go, I am saying some prayers that they are related to the teething and nothing more. My thoughts are with you guys...my bet is in a couple weeks, we'll all be enjoying a post about Jack sitting up all by himself and things will get better.
    Until then, hang in there!!

    PS. I love the line "love without limit"...beautiful!

  4. Don't beat yourself up on these hard days. the burden is so heavy sometimes, I know. the pain at times.. unbearable. Joy always comes with the morning! I pray you will see that little hand lift with intensity and wave brillantly at you! But, yes.. there are pediatricians that care and that will put their hand on your shoulder as you sob uncontrollably. THEY ARE OUT THERE!!! Drop the one you have, you need and DESERVE more care and concern than that. You need your jack's dr. to be his ali, the guy who is always in his corner being PROACTIVE for him. Trust your gut. I dont mean that in implying something is in fact wrong, I mean trust your guy that if you want all the t's crossed and i's dotted.. find a ped. who is willing to make sure all the loose ends are tied for Jack.