Friday, January 23, 2015

Finding Balance

This week we officially began school for the second semester even though we'd been doing a few smaller things all month.  It wasn't full days of school, but we are re-establishing a schedule and working towards more formal school lessons each day.

For school this week Amber continued algebra and even took a test; we started the new science curriculum and made huge strides in history. I supposed you could say Amber worked on writing too since it is an intrinsic part of her history lessons. Next week I hope to add back in German, literature,  and her new language arts topics bringing us to a full load the first week of February. At least a full load for Amber.

Even though Fred was home on Monday we started school.  Amber said it felt good to be back to her formal lessons after such an extended break.  When questioned further she admitted she really likes her breaks, but it gets boring not having direction. That's our little girl. Neither her dad or I can stand to be inactive for long.

First day of school lessons, along with a heart rate check.  And some fun with a new game: My Little Pony Monopoly.  (I ended up with both The Crystal Empire and Canterlot... it's like Park Place and Boardwalk)

Amber and I also attended the local dysautonomia support group monthly meeting for the first time. This particular meeting emphasized the teens and their parents.  Amber especially enjoyed the breakout portion where the teens went to a different room with a facilitator to talk amongst themselves.  I have been an online member, for a while now, of this and other support groups specifically for parents of kids with dysautonomia. We've also been dealing with Amber's condition for some time, so the meeting was nice yet anticlimactic for me. I did enjoy meeting in person the people I talk with online. Amber however loved it and wants to go every month. Given that she is still talking about the kids there, we will attempt to make the monthly meetings a priority.

Amber began taking her newest medication, Midodrine, on Saturday. We had some apprehension over the possible side effects and the fact it could possibly do nothing for her after all the effort. I'm thrilled to report she hasn't experienced any noticeable side effects and it's doing some good. Only the neurologist will be able to decide if this dose is sufficient, however we are seeing an improvement. Amber's diastolic (bottom number) blood pressure has seen an increase of up to 20 points on occasion, putting it around 60-70. This is fantastic.  The systolic only increases roughly 10 points, but that puts it around 90-100.

The Midodrine and Florinef do not stop Amber from having orthostatic hypotension or tachycardia, but it does make it not as severe. She's having heart rates in the 150's upon standing when she's on the medication as opposed to the 170's and 180's. She can only take the medication when she will be active, otherwise it can cause high blood pressure (hypertension).  It also only works in 4 hour increments, so we have to give it to her multiple times a day. I'm learning how to manage that portion still. 

Working on school at McDonald's while waiting on my car to have it's state inspections next door.  At least Amber felt well enough to be goofy, even if we could only eat the french fries. 
That's another adjustment this week. I've finally admitted I can't do it all. See I can even type it. Actually this is my fourth attempt at a post addressing this topic. I guess I might not be so good at admitting my down falls after all. Earlier this week Amber and I had a long talk about my needs and hers. It is not her fault she needs me differently than I expected. Its not my fault I can't always meet her expectations. However, if I continue at this pace, not making time for my exercise, or my doctors, or even a decent diet for me, then I won't be doing her any good either.

I am currently typing this on my iPad while I work out. Amber is taking a shower upstairs, 2 floors away from me, with her dad listening for a problem. This is part of our new plan. I don't have to do it all.  It's going to be a gradual process in finding our new path as chronically ill child and less stressed parent. There is only so much I can give up because the child does need help and most of the day I'm the only parent here.

Amber agreed to allow me to turn down activities for her when I'm not up for it, even if she can manage it. I'm allowed to say "restaurant tonight" with understanding from my family when I'm too exhausted to make dinner. Actually, Fred always has understood. Amber was the sticking point on the restaurants. Unfortunately, lately a lot of our dinners have been cheese, crackers and fruit/veggie because I had no energy for dinner and Amber refused to go out. Additionally, Amber is going to try to pick up more of her chores again, while I make time in the schedule for chores without taking away rest periods.

Perhaps instead of considering Amazon Prime one of our biggest tools as even every day items come right to the door with little effort on my part, we should use it less and make the effort to get out and take a slow stroll through the grocery store. It will give us a change of scenery and a little more exercise.  I probably will spend less money that way too, without the magic "one-click" purchase button taunting me.

Amber being silly and playing.  She feels so much better on her new medications.  We even tried popped sorghum in place of popcorn.  It pretty much tastes the same, but is extremely tiny.  And... made by students in my co-op class: the St. Louis Arch made from sugar cubes and icing.
I'm definitely not volunteering for "little jobs" anymore.  I've got enough already and they keep me quite occupied. I'll probably even drop some of my volunteer items when my current commitment is up. Not all, because we need to not be so focused on ourselves every minute of the day.  I so love to teach at our homeschool co-op too. The kids are a joy and I'm able to give back to the community that has embraced and helped Amber in innumerable ways.

It's going to be a long road to finding a new rhythm here that balances Amber's needs with my own.  Thankfully, we understand each other and are willing to make concessions that benefit us all.

Happy Weekend!

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  1. I want to wish you and Amber good luck on your new path of transitioning ... change sometimes takes a while to get adjusted to and I hope it all goes well. You surely do AMAZE me at how much you do for being one person. I'm happy to hear that you will slow it down some and not always have to do it all. Have a great weekend!

  2. It can be such a struggle to find time for yourself between homeschooling, special needs, and just plain old motherhood! You are doing a wonderful job. :)

  3. So happy she is doing well with her health. She looks so happy! Many blessings to you and Amber.

  4. Good for you. It is critical that you find ways to take care of yourself. Balance is so hard to find at times. The arch looks great. The frosting was a clever "glue".
    Blessings, Dawn

  5. Good communication is the key to making sure everyone's needs are, if not always met, then at least understood. You are, of course, right to make time for yourself. As Amber's main carer it is imperative you are as healthy as you can be. I think you both do a fabulous job in a very difficult situation.

  6. Finding that right balance is hard but a must for us moms 8). Love that My Little Pony Monopoly. Enjoy the weekend

  7. I'm glad you have come to the realization that you do need some time for yourself. I think that's the hardest and last lesson special needs moms learn! I used to feel so guilty when I would sleep too late or not have dinner ready when Malcolm got home. Sometimes I still do! But most nights I am up until 2 or 3 am with an insomniac or seizing daughter or because of my own insomnia and anxiety and I have to sleep sometime! As for dinner... now I make sure that Beth, Jerry and my husband get something to eat. Rachel often makes dinner for us too. But someday soon she will be gone! Sigh! Prayers for you guys, my friend!