Saturday, June 7, 2014


As I sit here at 1:45AM, everything seems possible.  I look around my house which is a complete disaster right now, and I say 'meh, I can handle it!'  I make plans for tomorrow:  we will go to the Farmer's Market in Old Town early, then go play on the playground while Elizabeth is in her Kung Fu class, no problem!  Be back by 1, eat lunch, take a nap and go to work at 4.  Easy peasy!  But that's because I have my energy jolt now, at 1:45AM, after the physical labor of climbing up and down ladders and hefting boxes.  Tomorrow morning, however, will be a completely different story.

But I don't want it to be that way.  I want to be able to give my best to the family in the morning and then work my hardest in the evening.

Which brings me around to being purposeful with my time and reconciling myself with who I am right now at this point in my life, and being sure that I am being who I need to be right now with each of my children.

Elizabeth is doing well.  She has been a tremendous help during this time of transition from me being at home to going back to work.  She is still plugging away at her schoolwork, and doing well with what she is doing.  I try to let her get out and have fun with her friends, too, so that has taken a bit of balancing, and although it's still a work in progress, I hope that she knows how much we appreciate her.

Jo is still working through some things.  We are still working with her on some aspects of her behavior that have held her back from her school work this year, but I am looking forward to testing her soon to see really where she is.  We are not yet sure what we plan to do for her for next school year.  There are a lot of things up in the air about that.  More on that later.

Gabriel is just being a boy.  I sometimes let him choose what he wants to do during his quiet time, and sometimes he chooses to spend it outdoors swinging and playing by himself.  Last time he did this, he entertained himself for almost 2 hours.  He found a hammer and screwdriver and went around hammering things.  This was after he found a big stick and poked at the bugs and rotten fruit and veggies in the compost pile.  He's such a trip to watch through the window when he thinks no one is looking.  My going back to work has been hard on him, though, and I need to make time to spend with just him.  Everyone else seems to get time one on one with me due to circumstances, but I have to carve out special time for him.

Jesse is doing his best to keep up with Jo and Gabriel.  He is pretty much potty trained, when he wants to be.  I find that if he has no pants on at all, then he uses the toilet well, but as soon as you put underwear on him, he pees in it.  But putting a long shirt on him and leaving him barebottomed has lessened the amount of diapers that  need to be washed, so I'm not complaining too much yet.

Hazel is doing well, too.  She is an adjusted age of about 6.5 months (she is 10.5 months chronologically) and she weighs 5.9 kilos, which is about 13 pounds.  She is still on the oxygen at .25 liters/min, and she still has her feeding tube, but she has hit some milestones!  She can roll over from her tummy to her back now, although sometimes we still have to remind her how to do it.  She also plays with her feet, which is another big milestone.  We have been given the OK to start her on solids, which means mixing a little bit of rice or oatmeal cereal with her milk and seeing if she will take it off a spoon.  We won't be putting it down her tube.  She is still on pure breastmilk, which I continue to pump (!) and has been gaining weight well with that.  She has actually been going to church with us, too!  We packed her up and took her 3 weeks ago, and she did really well.  That meant that Jimmy got to go to church, too, so we were all there as a family.  It made such a difference for Gabriel and Jesse.  No tears at drop off!  Jesse kept telling his teachers, 'Daddy church, Mommy church, Baby Hazel church...' on through the whole family.  He was much more comfortable in his classroom and played with the other kids very well.  We also took Hazel to the park on Monday and took her for a walk.  She really liked it and did well even though it wore her out and she was ready to get home into her bed when we were done.

We are working on weaning her off her O2, but even though her saturation doesn't go down when she is off the machine, her heart rate goes up since her body is not used to doing all of the work on its own.  When she is off the oxygen, then the hours that we will have the nursing care will go down, but for now, she still has a nurse, and we have actually had the same nurse for about a month now.  I thought that we were going to have to change again, but we have worked it out where we have one nurse Monday, Wednesday and Friday, and another on Tuesday and Thursday.  We pretty much like them both, so hopefully it will work out and we will be able to keep these nurses for the foreseeable future.

And that, friends, is us in a nutshell.  We are finding our new normal and slowly slipping into the new rhythm of life.  Your thoughts, prayers, comments and encouragement are always welcome.  No one ever said it would be easy, but my goodness!  No one ever told me it would be this hard, either!

Sunday, June 1, 2014

How Many Hours in a Day?

The question that weighs on my mind is whether or not the choices that we are making for the kids and their schooling are being made out of necessity or out of selfishness.

I want to homeschool all of the children.  I really do.  And I feel as if it is a huge failure on my part if we choose to send one of our children to school.  I feel as if I am failing and as if I am being selfish by not taking the time and effort to make it work to keep them all at home.  I feel like if I would just get up earlier, if I would just plan better, take more time, have more patience, be more organized, be stronger, more faithful, more trusting, more...more...more everything that I'm not, then I would be able to make it work.  Am I being selfish by not pushing myself harder and getting more done?

But on the flip side, I look at the reality.  I am a full time working mom.  That is not my choice, but it is what I am right now out of necessity.  I can not cut back my hours, and I can not redirect my energy from there to home because my job is very demanding both physically and mentally.  It pays well and has great benefits, and I really do enjoy it, but it is very tiring, and I must go in well rested and at the top of my game or I will be miserable and in the end, probably lose my hours.  And by working until 1 or 2AM, that means that I can't realistically get up any earlier than I do now, which is between 8 and 9.  Even then, I am only getting about 5 or 6 hours or sleep at best, and by the end of my work week, I am exhausted, which just adds to the problem of dealing with a child who has a behavioral disorder and is physically and emotionally demanding as well.

And when you take 40 hours off the top of the week, and then you add in a little time for sleeping and whatnot, there's not much time left, and that small amount of time must be spread across 5 children and Jimmy with hopefully a scrap or two for myself as well.  And Hazel having a nurse almost complicates things even more because I find that I leave Hazel to the nurse so that I can take time with the other kids and then I look back at the day and realize that I haven't spent nearly enough time with her...except, of course, on the almost biweekly trips to the clinics at Children's Hospital which tend to take up a whole morning, if not a whole day.  And the laundry, shopping and errands still need to be done, too.

So as we move into this time of option searching and decision making for our children, I find myself at a loss of what to think and how to feel.  I find myself in limbo land once again, fitting in nowhere and everywhere, and with tons of questions, fears and doubts, and no real answers.

But the good news is that it's church time tomorrow (actually, in a few hours!) and Hazel Grace will be going with us again.  This will be the third week in a row that she's been able to go with us, and it's made such a difference to the other kids to *finally* have the whole family back together again at church!

God is good!