Difficult Week



This has been one of those all consuming weeks.

  • Hope’s teacher wrote home, inquiring if, perhaps, Hope had missed her meds. (She hadn’t) She isn’t raging, but her temper tantrums are still epic, and she is still not safe.
  • GB switched therapists, as planned. She said goodbye to the therapist in the Little City that she shared with Hope. She started with her new therapist. The goal is that GB be able to express her needs verbally in “I” statements. She did much better than I expected.
  • GB and MK had a session together with the family dynamics therapist. I haven’t seen any changes in their interactions.
  • Malachi is still struggling. I enlisted the help of his other grandfather to get Booboo to agree to two days a week in a therapeutic preschool. I do not know yet how successful that was.
  • The Dad realized this week that on his retirement income we can’t afford to live in our current house; at least not while subsidizing J and MK. Duh.
  • We have been consciously cutting costs. We had already started our Food Diet- buying only food in it’s natural state, which helps not only our bodies, but our grocery bills.
  • The Dad started talking to MK about how we would be able to help her, now that we have much less money to live on. She flipped out. She has calmed down, but isn’t ready to explore her options. The Dad is confident MK will be cooperative.
  • I am busy with my new virtual filing cabinet. I finally have it usable and have started filing both girls school records in it. A paper free life sounds delicious!
  • Our rescheduled appointment with Hope’s new therapist is Monday. Unfortunately, it conflicts with my appointment with the neurologist. The neurologist needs to be rescheduled.
  • Hope is saying goodbye to the therapist in the Little City this morning. She is unhappy about having to change.
  • As I am switching to a paper free life, I realize there is a lot of other stuff clutter we do not need. Minimalists may be on to something!

Christmas Is For Family

Jakob Gabriel, mom, grandpa, and ... yup great grandpa.

Jakob Gabriel, mom, grandpa, and … yup great grandpa.

Christmas is family time. We started with friends before Christmas, did Christmas Eve and Christmas morning with just our nuclear six and had my sister and her family for Christmas dinner. Before my sister left this morning, my brother-in-law and sister-in-law arrived. We had an unexpected surprise when not only Jimmy and his family visited this afternoon, but also brought my first great grand baby- Jakob, who will be a week old tomorrow.

I am fighting off a bug and couldn’t hold him. The Dad had no problem taking my turns as well as his.

GB was thrilled to be taken out to lunch by her biological grandparents and her aunt. Hope did lots of sleigh riding at Bella’s. All the kids enjoyed the snow. No excitement and minimal drama makes for a good Christmas at home. The drama? That can wait until I have enjoyed the rest of my holiday.

It Is the Little Things…

I have decided that at this time, in this place, for GB, happiness is more important than being educated. The decision made at last week’s CSE was that her class was working at a level and speed GB was not capable of handling. The decision was unanimous. She

IMG_0917will do a thirty day trial, in a new class, starting January 2, 2013.

The Dad and I met the teacher and observed the class. It is officially called the “Multiple Needs” class. The new teacher went to GB’s class yesterday and spent an hour. GB liked her. GB visits the class for three hours tomorrow.

It was agreed at the meeting,  since GB was leaving, and the work was beyond her, Mr. Teacher was not going to place any demands on her. Sounds straight forward enough. Unambiguous.

GB has missed every recess because of incomplete work. That is four days straight. I have called him, emailed him, and wrote in her notebook. Finally, today I sent an email to Mr.Teacher and copied the principal and the Director of Special Education and told them that the next time she missed recess would be her last day in that class room. The principal and Director of Special Education are unhappy, although it wasn’t clear who they were unhappy with.

GB is looking forward to her new class. For now, that is good enough for me.

When Things Change…

The last week have been full of many unexpected changes. It has now been a whole month without Hope attacking me.  This week I realized it has also been a whole month of me not being Hope’s mother. That is not acceptable to me. We have two different agencies involved with out family to help Hope. We saw nobody from either of them this week and Hope’s behavior hasn’t been any better or any worse. She has still raged, she has been nasty, and she has been physical with GB. Monday the newest worker, Mary Poppins is coming to meet. I have scheduled 15 minutes for this meeting. I plan on telling her I see no benefits for our family in her visits and we will not be using her agency’s services any more.

I now have over 12 extra hours a week available, since Kenny chose to let go of this world and move on to the next. I have done a bit of crying, but overall I feel proud of him…the courage it took to deliberately say “I am ready to go”. I want to have that kind of courage when it is my time. I kept a regularly scheduled appointment with my cardiologist and heard that I have been upgraded from “cardiac insufficiency” to “heart failure”. I go to St. Peter’s this week for tests that, among other things, will measure the ejection rate of my heart. It explains my ongoing fatigue and how difficult it has been to get anything accomplished.

Divide and conquer techniques have made life easier for GB. The school, in its infinite wisdom, decided GB could skip recess in order to mainstream. I am not sure of their reasoning, since I spent Wednesday and Thursday with Kenny and only had time to remind them, via email, that they could not mainstream her without my permission and they did not have it. I meet with the school this week to figure out the next step.

GB is still heavier than is healthy because of the loxapine. I printed of two healthy eating charts, one for me and one for GB. I will take them to Stapl*s to get them laminated. I hope, by making us more aware of what we are putting in our bodies, we can improve our eating patterns. If we are both doing it, it might be easier on GB.

Kenny’s funeral is Tuesday. For many reasons I have avoided church in the last year+. I will be there Tuesday.

Five Hours of Peace

It was pouring outside. I was lucky- there was a parking space right next to the door. I walk down the hall to the blue elevator and take it to the second floor. Stopping at the nursing station, I learn dialysis is running late. When I enter the room, he is asleep. I put my chair in place and settle down. The TV, as always, murmurs in the background. It seems like his arms are thinner than last time and his face more swollen, a side effect of the drugs. I put my hand gently next him, not sure how bad the pain is today. I watch him breathe, comforted by the evenness of the breaths. I sit for awhile, comfortable, waiting until he wakes up. I have a book to read, but leave it closed. All the stress slowly leaves my body.

His hand moves and covers mine. It is warm and soft. I half notice the background noise has changed from football to golf. I smile, thinking that I had never seen the point of watching a golf game. He has always liked his sports. His eyes open. “You’re here”, he says. I use my fingers to lightly draw curlicues  on his forearm, watching his face to make sure I am not causing pain. The nurse enters to give him his morphine. She gives me a quick look that says “Rough night”.  The endocrinologist comes in. He glances at his patient and tells me they have to lower his insulin, because he is eating so little. Then we are alone again. I go back to to drawing my curlicues, concentrating on using enough pressure that he feels them, without using so much that it becomes painful. Touch is so important.

His eyes open.” You’re here”, he says.”That feels so good”. I smile. He is not the first dying person I have sat with. They all want the warmth of touch. His eyes catch mine and hold them. “How long can you stay?” I keep my voice soft. “Until I have to get GB off the bus”. His eyes close again. We hold hands for a long while. Tears  leak from his eyes. I ask him for a number- the hospital code for pain. “7” he says. The goal is to keep him under a 5. I buzz for the nurse and ask her to give him his dilaudid. I know we are an hour away from another dose of morphine. The dilaudid goes through his PIC line and his face relaxes. His hand reaches for me and I take it. “I am glad you’re here”, he says. “So am I”, I answer. Too soon, it is time to leave. I kiss his forehead gently and tell him I have to go. He says, “You’ll come back.” It is not a question.

So Far, So Long

Yesterday, Hope was dysregulated all day. We tried physical contact, a 2 mile walk, early lunch, one-on-one time and nothing helped. The Dad had to carry her raging out of the home improvement store. She ended up watching us swim because she chose to sun with with only part of her bathing suit where it belonged.

The Dad has a four day weekend and when we talked about what each of us wanted to do, GB knew what she wanted. She wanted to go to the gym with The Dad, because they hadn’t been there since Hope joined the family in a long time. It is something they used to do together two or three times a month. It was their “thing”. The Dad didn’t really want to, for reasons that had nothing to do with GB, but he recognized how important it was to GB. Some of the changes we have had to make to accommodate Hope have not been easy on GB.

The shrink and I (by email) decided to dramatically increase Hope’s Risperdal  in an attempt to get the rages back under control. The insurance company, MEDCO, in their infinite wisdom and based on their vast experience with Hope, decided she didn’t need it. They refuse to talk to us and only the doctor is allowed to even try to change their mind. Fourth of July weekend… I am not optimistic, and so, for now, I guess we live with the rages.

While The Dad and GB are at the gym, MK is talking Hope and the baby for a walk. I think I will be keeping both girls home today. Between gardening and swimming, they should have enough to keep them busy.

Finding Balance

When you have special needs kids, finding balance is important. You don’t want to make their world unnecessarily small, while you also don’t want to push them beyond what they can handle. It is an issue in big things like school and in less important  things, like activities. GB’s widely scattered abilities make finding this balance even more difficult.

Last night, GB tried out a new gymnastics class. The class she is in will not exist in September and her NT “friends” are moving on to other activities- activities that just aren’t doable for GB at this point. I am sad that she will lose weekly contact with these girls, after almost five years of having them as a regular part of her life. Fortunately, GB still enjoys gymnastics. Unfortunately, our safe, small, non-competitive gym will only have one class that is appropriate  for her. It is their “team” class. They don’t compete, but the class is 90 minutes long and has a dance component. The girls in this class take their gymnastics  seriously. There is only one girl who is more skilled than GB and  one girl  her age already there. GB didn’t have a problem with any of the girls- I think they are so focused on what they are doing themselves, GB’s differences didn’t make the radar screen. It probably helped that she was noticeably younger than most of them. It is almost a $1000 for a year of this class and I am reluctant to lay that kind of money out when I am not sure it will work. Maybe we will try the class again in a couple of weeks.

One of GB’s talents is gymnastics. I want to let her develop her strength. It is not good for her if all we ever do is try to shore up her weaknesses.

Long Day

GB’s shrink has decided to add Zyprexa to her medication regime. I am not completely sold, but the only other choice he gave me was Seroquel, and I have had too many kids react very poorly to Seroquel to even consider trying GB on it. He called it into the drugstore at home, so we probably will not start it until Sunday night.

The girls had a difficult day today. Most of us were sorting and packing stuff. There were people in and out all day and anytime I was engaged in the sorted, they slipped away to unpack boxes so they could take “treasures” home. My sister and I understand each other very well and there is little friction over where different items are going, but the extended family members are very sure what they are entitled to, and that tends to be energy draining. The girls have been away from home for almost 2 weeks and they really need to get back to their home and routine. I wish I could click my heels three times and end up at home.

Black Friday

For the first time in years, my sister and I opted out of shopping on Black Friday. We have been simplifying holidays a little bit at a time for years. The past year has contained so many changes for both of our families, that we agreed it was time to do something completely different. Tonight, we put everybody’s name in a hat and everyone drew out a name (MK drew a name for Malachi). Everybody will be responsible for choosing a gift for the person whose name they drew. The kids under 13 will also get  stockings. At least, that’s what we are aiming for. Neither J nor MK are thrilled, but if they choose to have Christmas with us, they will have to go along with it.

I am thankful that I still have my sister to share the good times with.