Saturday, November 21, 2009

A Full Disclosure Blog Entry

Musical Daddy has written something similar, so now it's my turn.

We are packing it up, packing it in, selling the house, and moving to Pittsburgh. It's where my parents and a large chunk of my extended family currently reside.

I apologize for the fact that this information got out to a few groups of people to whom it wasn't really supposed to get out until later. The reason why it was supposed to stay under wraps, although many people were told, was that first the plan was "we're moving sometime soon--let's just get one of us a job." Then it became, "we're moving over Winter break--if we don't have a job by then, it will be easier to get one." So we figured that some situations would be made easier if people didn't know yet. Of course, then we had to ask for help, and the call for help was passed around. My fault for giving license.

The latest development, which happened on Wednesday, was that The Boy's treatment center issued forth the same policy that hospitals across the nation had issued for inpatients. Now it applies to outpatient treatment centers too--no children under the age of 18 who are not patients are permitted in the hospital. Obviously, this is to protect everyone from swine flu and other fun diseases, because my 4.5 month old baby who spends almost no time away from me OR his brother (who doesn't get out much, suffice it to say) is clearly a huge problem in this regard. Nevermind the fact that when The Boy was there on Thursday, he was playing with the other kids and sharing the same toys with them, and while some of them are on similar protocols, others are not. Some live the sort of isolated life that The Boy does; others go to school. Look, I do understand that children are notorious germ carriers, but the knee-jerk reaction here makes NO sense, at least for our family and other families whose kids don't come into contact with others that often.

My father-in-law is the only person with daytime availability that The Boy loves and trusts around here. It's not a shot at anyone else--my father-in-law has gone way outside of his comfort zone and has made such an extra effort with The Boy, and it's paid off with huge smiles and hugs, and lots of love. With him being ill and recovering from pneumonia, and travelling to see the family on the other side of the country, we're up a creek--w now require two people to care for the children on days when The Boy has his treatments, and there just isn't the availability. Last week, I left Meatball with a very nice "bubbe" (grandmother) who lives nearby. I had met her only once before, when she came to volunteer in the hospital. While we certainly appreciated the help and were lucky to have it, the fact that we have to scramble to find another person when initially my staying home from work was supposed to solve many of this problems makes it impossible. Furthermore, even though I send bottles with him, he'll take about 2 ounces over several hours and then reverse-cycle later in the day. Usually at night.

By comparison, my mother has daytime availability, she has friends and family who also have daytime availability and can come to the house, and the hospital being about 10 minutes away also makes things a lot easier.

My mother works part-time and with a relatively flexible schedule. She does 2 hours of private reading instruction in two different places. She does preparation work for her teaching, and she does various forms of educational consulting in addition. While the people for whom she works would rather have her for some of the time than anyone else even if they can be there more often (yes, my mother is that good), it is generally preferred that she be there. Furthermore, when she doesn't work, she doesn't get paid. Her dropping everything to come out here and shoulder much of the responsibility for The Boy's care means a loss of a few hundred dollars, plus whatever travel expenses she incurs.

Having said all that, it's important that I explain how much wonderful help we have had here. We have friends. We have a few wonderful organizations--Chai Lifeline, Bikor Cholim of Livingston, and St. Peter's Episcopal Church of Essex Fells--who have supplied people power (and food too!) to make it easier. We were glad that for a little while we were able to sneak Meatball into the inpatient area of the hospital. We even had a sweet security guard who would watch Meatball while we would switch places.

I don't want to say that the help that we have received hasn't been great and hasn't been enough for the situation as it formerly stood. The problem is that adding Meatball into the equation and THEN adding paranoid hospital policy (it's everywhere--they have something similar in Pittsburgh, I'm sure) means that we would require a revolving door of volunteers for even the simplest outpatient visit not to mention the inpatient stays, and it just can't work that way. Also, when Grandma isn't here, the ONLY person who can stay overnight with The Boy is Daddy (I'm home with Meatball overnight and he is still nursing at night), and it's really hard. We can't compromise on either child's nighttime care, but having a third person in the mix means a much easier time. And maybe Musical Daddy and me not having to spend weeks apart.

Professionally, we could both use a new start. While my job (from which I am technically still on leave) has been great in terms of the people and the support that we've gotten, the climate in the district is rapidly changing as an ever-increasing emphasis on test scores is forcing sacrifices in the arts departments. Yes, we know, story of everyone's lives. What I've seen in my time there is that the arts programs are such a draw, particularly for many students and families who could easily go elsewhere. Not only are they a positive outlet for students with issues, they also keep a lot a families in the public schools. Keeping successful students from going elsewhere is just as important to the test score bottom line as is bringing up the performance of students who struggle. I won't get into Musical Daddy's professional issues here. That's his prerogative.

The fact is, it is a very lonely life that I have led over the past year. Boo hoo. Musical Daddy has school, but he also goes up north three days a week for other work. Marching band season was particularly challenging--Tuesdays he'd leave the house at 7-ish and not come back until 11pm. We live just far enough away that it is apparently a major ordeal for family in state to visit us (I've seen my sister from Maryland more often). I don't live that close to where I was working. I have some friends, and even some friends with kids, but if The Boy isn't good to socialize, then we can't really go out to play. I had one thing that I could do on my own, which was go to orchestra rehearsal.

Oh well--my kids, my problem, right? Everyone else has issues too. Why should I get any special treatment?

Not everyone else has to spend this much time in the hospital. We need help that we can't get here. I need my mother. She "fixes all better." Apparently my mommy superpower is the ability to find things...useful, but not as good as fix-all-better.

And not that I haven't had some wonderful times here. But it's time to go. It was the right thing to do when we moved out here. And now it's the right thing to leave.


Jennifer said...

I'm sure most people will understand. I'm surprised you have made it this far without as much family close to help. The schedules you have had are much are...well...insane. You are doing what is best for your family and that's all you can do (and have to do).

The hospital policy is here in FL and I think it is a bit much.

I wish you the best of luck in selling your house and moving in the midst of everything else!

mommybird said...

That sounds like a wonderful plan. You need to have the available help when you need it and time with your husband is so important especially with everything going on with your life. I'm sure everyone knows that you are thankful for what they have done and will understand that you just need more help than anyone can really offer there. I wish you luck in selling your home and movin as well.

Ari said...

My thoughts have been with you and your family throughout this ordeal-- I mentioned The Boy's name before the Mi Shebeirach at High Holy Day services, both last year and this year. And, truth be told, I have gotten teary-eyed after reading your posts about what The Boy-- and, by extension, you, the Musical Daddy, and Meatball-- have gone through. I haven't left comments, simply because the magnitude of the situation has left me at a loss for words. I am terribly sorry that things fell through for you in New Jersey, and I wish you health, happiness, and all the luck in the world as you start anew in Pittsburgh.

My life said...

It sounds as though you are making a good decision for your family. I don't know how you have made it this long without the support of your extended family. Hugs. I hope your home sells quick and your move is swift.

Sarah R said...

I'd be making the exact same decision as you are. Wow, just wow. That all sounds so stressful and I haven't lived in your shoes!

JC said...

Hope the move is quick and painless. I couldn't do it without my mom either, so I totally understand why you need to move. I hope life will be eaiser and more enjoyable in the following year. You guys sure do deserve it!