This week has had it's fair share of moments which could have gotten me down. Yes, I did succumb to those feelings a few times. However, today I felt like I should really just take a look back on the past week and think of the many blessings which I have had to turn my week around and end on a positive note!
Sunday - We were blessed to have a nurse at home for Peyton so that we didn't have to worry about her while Ron, Moira and I went to church. Normally, Peyton would come with us and be part of the Won by One special needs ministry while we attend the service. However, Peyton was sick towards the end of last week and having a nurse meant that the rest of us could still go to church and not have to take "shifts" so one of us could stay with her at home. Moira went to Kidscoast, which is a wonderful program for the children at Seacoast. Ron and I went to the service. We listened to Pastor Greg Surratt give a most amazing message as part of the series called "The DNA of Joy". The message really challenged us to take a look at our lives and to stop complaining! This particular message isn't posted online yet, but I would encourage anyone to go here and listen to the messages from this series. This past Sunday's message will appear eventually, so when it does, I would highly recommend it to anyone. It is really amazing when you have to stop and examine everything you say and do before you say and do things so you can hold yourself back from complaining, whining, grumbling, etc. Call it what you want - they're all forms of complaining. Trust me, I haven't been perfect this week in this regard, but it's really been challenging me to think more.
Philippians 2:14-16 (New King James Version)
14 Do all things without complaining and disputing, 15 that you may become blameless and harmless, children of God without fault in the midst of a crooked and perverse generation, among whom you shine as lights in the world, 16 holding fast the word of life, so that I may rejoice in the day of Christ that I have not run in vain or labored in vain.
Monday - Choir practice night!! I have been very blessed to be a part of the Seacoast Worship Choir since the end of August 2010. I won't pretend to have the most amazing vocal talent on the face of the Earth, but I auditioned and was able to join an amazingly talented group of people. We sing occasionally during weekend services and also on First Wednesday from time to time. I love this group of men and women. I love being part of the worship choir and enjoy the opportunity to practice with them every Monday. In addition to being a choir, they are also a group of people you can bring your prayer requests to. We spend time in prayer at each practice, and it has helped me tremendously that this group has my back when it comes to meeting prayer needs for our family. I love this group so much!
Tuesday - Last week, we learned that Peyton's home nursing hours were to be increased to 84 hours per week. Now, that takes some doing to get that many hours scheduled and it will take some time before we're at that point. Trust me, we are so grateful for any hours we get. Right now, we're somewhere in the 60s in terms of hours a week we've got covered. We had originally qualified for 56 hours per week, but got a temporary boost to 72 potential hours per week in January (we actually got 72 hours only one week of that month). Just as that expired, our request for a more permanent increase was approved. That is when we got 84 hours per week. Tuesday was a day when I had nursing coverage from 7:30 in the morning until 10:00 at night. We've had a few days like that, but let me tell you, it makes a big difference. I need to work on my ability to rest and not be feeling so burned out constantly, so hopefully if we can get more days like this, that will actually stand a chance of happening! Peyton is a child who requires 24-7 hands-on care. There are 168 hours in a week. To potentially have half of that time covered is amazing.
Then there's Moira. Moira brought home a Valentine card for Peyton which she made herself. I read it and it brought tears to my eyes. My heart just breaks for Moira sometimes because it just has to be tough for her having a little sister like Peyton who has so many issues and is in and out of the hospital as much as she is. It has to be tough to know that her sister gets so much attention, yet not fully understand why that is. This card just demonstrated to me the love that Moira has for Peyton. It showed the kindness, goodness and compassion that Moira has for her sister. See for yourself:
"From Moira To Peyton"
"Hi Peyton. I am sad because you are always sick all the time. I wish you do not get sick anymore. I love you so much and you are the best sister ever and that is true. Love Moira"
Wednesday - This was the one day of the week which could have turned out very differently based on my reactions to the situations. I could have done better, but all in all, the end result was far better than it could have been. To start, it's been a struggle to get our increased nursing hours. Ron and I took matters into our own hands and worked out some potential changes to the schedule that was given to us by the agency. We presented those to the agency and, for the most part, we got what we asked for. Wednesday involved a one-time change to one of our nurse's schedule. Instead of a 12pm-10pm shift, she was to come in at 8am-5:30pm and would be followed by a second nurse from 5:30pm-10pm. 8am came and went and there was no nurse. When it got to be past 8:30am, I had to call the agency. The reality was that I was not happy. That early morning period is one of the two busiest periods of the day when it comes to Peyton's schedule. I was also pressed for time because her PT was to come at 10am. It takes all that time and then some to get through the busy period. I was chatting with Ron and I just wasn't happy. BUT I wasn't exactly throwing a fit either. Peyton is my child and of course I am willing to take care of her needs!! It wasn't a question of whether or not things would get done. Rather than succumb to the irritation inside me that was building up, I took a breath and just went about the routine, doing what was required - taking care of a special child of God who simply cannot help herself and counts on her caregivers for everything. The nurse had simply forgotten about the schedule change and arrived at about 9:15 after the agency contacted her. When she showed up, she was hanging her head in shame and, by that point, I was long over myself and my initial irritation and greeted her as I would any other day. No worries.
At 2:30pm, Peyton began to have a problem with her g-j tube. Until the end of her shift at 5:30, the nurse worked in vain to try to get the clogged tube to relent. It just wouldn't and it looked like we were in for an unplanned trip to the ER. She wasn't happy with herself - I could tell that. It wasn't her fault. It just happened. Some of Peyton's meds are really thick and greasy and it's no wonder it clogged. We just couldn't fix it at home. When the second nurse came on, the first had to give up and leave without resolution to the problem. I know it just killed her. Was I happy that we were in this situation? No. Was I happy about having to go to the ER? NO. I wasn't happy. I was TIRED. I wanted a normal night and I wanted to sleep! BUT I, once again, got over myself and didn't let the irritation of the situation get out of control. At least I tried! I kept thinking back to Sunday's message on taking the complaining out of our lives. My mind was saying - "This situation deserves complaining about. I'm not happy and I don't want to have to deal with this so I want to complain about it!" I am sure I could have done a bit better with my reactions, but I honestly think that it could have gone worse for me! We had the second nurse (who happens to be a fellow Seacoaster) and she accompanied me to the ER. We were thinking it was early enough that we'd get home before her shift ended at 10pm. WRONG!!! The trip to the ER could have brought my frustration, irritation, and complaining to a whole other level. Instead, I refrained from all of that. Were we happy to sit in the waiting room for a couple hours before being called back? No. Not really. But that's the nature of the beast. Triage. It's not first come, first served and I know that - no problem. Was I happy that it took over an hour after we got into an ER room for anyone to come in to see Peyton? Was I happy that it took the resident another 2+ hours to get the kit that was needed to de-clog Peyton's tube? Was I happy that the solution injected in her tube then had to sit for an additional hour? Well, no, not especially. That said - instead of worrying about any of it, I took it as a great opportunity to get to know this nurse better. She's only worked with Peyton a few times. I've never spent that much time with her. We had hours together that night in the ER and instead of grumbling about it, we found out a lot about each other and we were able to joke about the situation - even about the fact that the room's temperature was 77.5 degrees F the whole time we were there. We didn't make it home by 10pm, but the nurse stayed with us the whole time. We got back home at 1am. She finished charting for the day and then left. It was a late night, but, hey, those couple hours we lost from the morning's mishap were more than made up at the end of the day!
Thursday - I just want to generically state that I am very blessed to have Ron as my husband. However it appears on the outside, just know that this man does far more than you can even imagine to help our family. His support is undying. His love for his family is never-failing. Even in the midst of this "beautiful mess" that might sometimes describe our situation, he is a constant through it all. Even when I am feeling inadequate, insufficient, incapable, etc. in my role in life, Ron is always there to pick me up and remind me that I am not any of those things.
Ron taking a walk with Moira on the beach (1/18/11)
Isle of Palms, SC
Friday - Today is Friday! I'm tired. I haven't had a lot of sleep this week. I haven't spent much time with Ron this week. This morning, once again, we are blessed to have a nurse from 7:30am-12pm and another from 12pm-10pm. While I was sleepily going through the motions of getting ready for the day, a thought occurred to me. I could start this day off really well by suggesting an impromptu "Starbucks date" with Ron after dropping Moira off at school. I have a Starbucks keytag which is usually always loaded with a few dollars.
As an aside, an additional blessing has come in the form of rewards earned by using Swagbucks. Click on that for my referral link if you're interested in signing up. It's a way of doing online searches and doing other random things such as daily polls, watching videos, etc. to earn points which you can redeem for free stuff. Every time I hit 1300 "swag bucks", I turn them in for a $10 Starbucks gift card. I am currently awaiting my seventh gift card since starting this program about a year or so ago. That's $70 in free Starbucks, people!!! What can be wrong with that?!?!
So, Ron and I ran across to Mt. Pleasant this morning to the nearest Starbucks for breakfast to go. We used up what was left on my keytag (that's ok - expecting another $10 soon!!), paid a few dollars, and got coffee, tea and a couple pastries to go. I'm saving my marble pound cake for a mid-afternoon snack. What I had for breakfast was FREE. Can't beat free!!! The other day I received a postcard in the mail from Starbucks which entitled me to a free "Perfect Oatmeal". I hadn't tried it before. Yum!!
Starbucks "Perfect Oatmeal" accompanied by a Venti Awake Tea
Love how colorful the oatmeal is when you add the fixins! Toppings include your choice of brown sugar, dried fruit (cranberries, two types of raisins, and cherries), and nuts (almonds, walnuts, and pecans).
Saturday - Well, I can't predict the future, but I suspect that regardless of how my day goes, the last day of this week of blessings will include many blessings!
The moral of this long tale, for me, has really been that despite anything which might have happened to cause this past week to have been a really bad week, I have been able to look back and pick out several things that happened this week which really and truly are blessings in my life. If I thought about it even longer, I am sure there were many more blessings!