- Nighttime - it can be the hardest, especially when Todd's gone. I have a hard time going to bed for it can be very lonely. My thoughts won't stop, I am thinking about what I need to do the next day, the upcoming appointments, the regrets of that day, the guilt of that day, ideas on what I can teach my kids, ideas on what may be possible with Evelyn. Then, if that's not enough, I listen to Evelyn saw logs. She has a loud snore, and if it was just a long, steady, loud snore, I would be fine with it, it would be like a white noise. The problem is that she keeps having apnea-ic like episodes. It's hard to doze to sleep when all of the sudden your baby is silent. I freeze, unable to move, aware of every little sound until I hear her inhale. I think she does it to play a trick on me, but I am not laughing.
-Todd- I miss him. He is so busy with work. He has been doing so many stinking interviews, interviewing prospective Residents. The worst part is that this time he spends at these interviews and meetings are not reducing the amount of shifts he has to do each month. The hospital has been so busy that when Todd is working he is coming home 3 hours late. Pretty much I don't get to see him very often.
People keep saying that things will get better when he's done with his Residency. I hate that idea. We always tell ourselves silly things like that. How often do we hear someone say, "Life is just really busy right now", they'll blame the holidays, the catching up from whatever, the end of the school year, the "training phase", etc. I hate this idea. I remember thinking that when I graduated high school I would get some more rest for I wouldn't have cheer practice at 6 AM and soccer practice after school along with all the activities and games while managing a 4.0 GPA. Guess what! I didn't ever catch up on my sleep, in fact it has gotten worse! At some point we have to look at our lives and realize that this "phase" is our lives. It doesn't get better, only our attitude can change. If we are busy, we will always be busy. I hope that things will slow down for Todd, but if not, I am so grateful for him. He is so attentive to me and the kids. When he is home, he IS home. I never feel that he is ignoring any of us and he uses his time to connect and help me and the kids. He really is my best friend and I enjoy being with him so much. Just wish it could be more, and I do feel for him, he gets so exhausted. Such a hard worker.
-Left the dishes undone in the sink tonight. I hate that and will pay for it in the morning. But I have no motivation to do a load of dishes. I had already done breakfast and lunch dishes, but by time we have dinner, clean up the table, get kids in jammies with teeth brushed, read scriptures, read books, feed Evelyn, and put kids to bed, I have lost the drive to do the dishes. It doesn't help that my hands ache. My fingers get very dry and achy during the winter and dish soap only adds to the pain. Fortunately for me, Todd is aware of this and will wash the dishes when he is home, only problem is he is gone most the time. Plus I don't want him to spend his home time doing dishes.
-Homeschool- I love homeschooling. It has been such a blessing in our lives. Lately I have not been as attentive to the boys' school learning as I would like. Life has just been a little difficult with Evee's health. But, there are some things I have been doing well and I feel that God has been filling in where I am lacking. I feel good about how much the boys work, they do household chores and help keep the house in order (though it gets out of order very easily). I feel good about the consistency of our family scripture study. The boys do an awesome job. When it's just me and the kids, and if Evelyn is needing a little more attention, Mikey and Roger will "lead" the scripture reading while I work with Evelyn (usually she's wanting to eat). I am so impressed with Mikey and Roger, they discuss what verses they will be reading, whose turn it is to read, and they will summarize what has been read and even "liken" it to our lives now. I am just impressed that Mikey, Roger, and William are all reading the verses so well, but everything else is just amazing. Academically, the boys have improved their reading proficiency, and their reading comprehension....a lot. William keeps asking (and even started crying today for he feels that I have not been listening to him) if we can read the scriptures in the morning, in the afternoon, and at night. If I was a better person, we would.
I went to check on the boys the other night. They were all in their room "for bed". No one was asleep. But I couldn't complain. William was reading a book to Grant in their room (though I did disapprove of Grant's sucking his thumb). Mikey was reading The Friend - a church magazine with inspirational stories - and had his scriptures out. He was reading the stories in the magazine and then looking up the scriptural references that were listed. Roger was in his bed reading. Roger will always read before bed and I will often find him still reading a couple of hours after "bedtime". I just found out that the book he was reading, and finished, has a 6th grade reading level. The boy is seven years-old.
I would love to think that all of this is because I am the PERFECT homeschooling mom, but the truth is that I am not. The truth is that there is so much more I could/should be doing with them. I just feel that at this time in our lives, the Lord knows what I have to deal with with having a Special Needs baby that He is making up for my shortcomings. God is so good.
-Special Needs- yep, I'm learning to accept and say it more and more. It is difficult to come to terms with it, and I think I still have a lot more acceptance to gain, but baby steps. Even though I always thought that I would have a Special Needs child, thinking it and actually living it are two separate things. But, as a friend pointed out, imagine how much farther behind I would be if I never had those feelings and revelations.
Saturday, the day after coming home from the hospital, Evee pulled her ng tube out. Surprisingly, I did not panic and just put it back in. (Kind of a weird experience). That night I woke up to her coughing/gagging/spitting up. I turned down the amount of food she was getting an hour and went to bed (after, of course, checking to see if she was okay and allowing her to throw up anything she wanted). An hour later I woke to the same sound again. After making sure she was okay, I turned off the food and unhooked her from the feeding machine. Next morning I called the doctor. It's pretty amazing when you can call a doctor and without them having your chart, you can use your child's first name and the doctor not only knows all about your child but even calls you by your first name. Evelyn has the best care and doctors!
The doctor had a home care nurse come to my house to make sure that I had placed the tube in the right place. I had, amazingly enough. But the visit was such a blessing. The nurse was asking why I wasn't enrolled in the home care, and was pretty sure that Evelyn qualified for that.
Then, not being sure I was aware that my child needed PT/OT/Speech, the nurse tiptoed around the fact and told me that she could have Evee evaluated for in-home PT, OT and Speech therapies. This is great news for even though Evee gets PT and OT weekly, having the therapists come into the home will be so much better and more convenient for my family rather than us going downtown once a week.
-My ward has been amazing, especially Dorothy. They have not only shown their concern and love, but they have jumped in with helping with my boys. I do feel badly about the fact that other people have had to help because of my choice to homeschool, but no one has given me any sort of attitude that would suggest that they feel that way.
It has been hard managing my family and all of Evelyn's appointments and hospitalizations, especially with no family in the area, but my friends have really made me realize that you don't need to share the same blood to be family.
-So many medical things going through my head. If it wasn't for a binder/folder my friend made for me to keep all Evee's medical stuff, I would really be lost. Trying to remember what each doctor is saying and recommending is daunting. Trying to recall all that was said, impossible. Top that with the fact that even the doctors don't know all that is going on, that we are just treating symptom after symptom, it is a lot to take in. I am so grateful for the care that Evelyn is receiving. I have nothing to complain about. Each doctor has been very attentive.
Evelyn is having surgery the 29th. She's having a g-tube put in and a possible nissen (still not 100% sure we're doing it). I hate the idea of surgery. I'm not a big fan of a lot of medical intervention (ironic I would marry a doctor, I know). I keep thinking we may be going a little overboard, but then I will have moments or experiences where I realize that we are doing the right things. Though I know that this much medical intervention or attention is not needed all the time, it has and is helping Evelyn. I keep thinking about how Todd and I always felt that we were born 200 years too late, but how if we had lived 200 years ago, Evelyn probably would not have survived. The labor and childbirth would most likely have killed her and me.
-I don't notice Evelyn's ng-tube as much. Weird what you get use to. I don't really notice her shunt as well, though I do know it is alarming to see. I have noticed more people looking at Evelyn, the best is the kids at church. Their faces and inquisitive looks are so honest. It does bring reality back to me when I see that other people see abnormalities in my beautiful princess.
I love kids' honesty, their innocence. Evelyn's condition is often on my boys' minds. They will always pray that she won't die. She's not that fragile right now, but I love how they say it without fear or worry, but with perfect faith.
William has prayed that Evelyn "won't be crazy" when she grows up. That pulls at my heart a bit. Then the other day he prayed for my sister's baby. After the prayer, William informed me that he prayed for Aunt DeeDee's baby so that he " won't be born like Evelyn". The boys adore Evelyn so very much, I think that they just see the pain and stuff that she has to go through.
-Taking care of Evelyn isn't all that different, or so I think sometimes. Then I realize that I am still holding her like a 1 month-old. That I am filling and dispensing so many medications that I could start my own pharmacy. That I am going to more doctors' offices then a drug rep. That going to bed does not consist of just checking on my kids and falling into bed. BUT, Evelyn is not like other babies. She is incredibly happy. Very social. Very pleasant. Very loving. Very special. I wouldn't trade her for all of the rubies in the world.
-Got a new phone today...an iPhone 5. Woooo. It seems to be just like the iPhone 3 I had, except I'm having problems getting the scriptures onto it. Very frustrating. Worthless....almost. I won't throw the baby out with the bathwater though.
-I played Battleship against Mikey. I always teeter between trying to make it so he (or whatever boy) wins to making sure that I play as good as I can for that is the only way for the boy to learn strategy and step it up. I was impressed with how well Mikey played. But I was more impressed with when I won he very maturely looked at me and said, "Good game".
-Boys are growing up so fast. Too fast. Mikey is up to my shoulder! But not only physically are they getting big, but other ways. They are becoming independent, and actually helpful. Roger loves it whenever we have potatoes for he loves peeling them. Grant has been controlling himself more and has been hitting his brothers less often when he is mad.
-In church we were challenged to set goals for ourselves and for our families. In some ways I hate January, especially when I go to the gym. In January, the parking lot is always full and there are so many people at the gym. But in less than a month, the crowd dies down and people give up on their resolutions. But with it being mid-January, I am feeling more accepting of setting goals.
For Family Home Evening tonight, the boys and I discussed what we had learned from the talks on goals. We each got a piece of paper and wrote down our goals.
Grant's goal - Give people things - he drew a picture of himself giving away something, I don't think that's a problem he has, but it's what he came up with
William - Have personal scripture study every day - I was impressed with his desire for this undertaking. I need to make sure I support him as good as I can.
Roger - Get baptized, get up and clean his room every morning - He thought that the baptism was enough, which it would be, but then I was able to get him to think more. He decided that he wanted to start his days off with a good attitude. He has noticed that if he starts the day off working hard, he has a better, and more helpful attitude. When he has a good attitude, Roger is my best worker. He can work fast and be very good at cleaning and organizing. He is such a great kid. So sweet, so sincere.
Mikey - slow down, clean room, and a couple more - Mikey is a hard worker, but sometimes he cleans with too much speed and not enough care. Mikey really thought about what he needed to work on. I was so proud of him of how much thought he put into each goal.
I hope that this post doesn't seem depressing. There are some hard things that I am having to deal with in my life right now. They are hard, they are stretching me, strengthening me, but overall, I am still happy. I am so incredibly blessed. There are so many good things in my life. There are so many good people. There are so many good experiences. Even though Evelyn's needs have been stressful and at times terrifying, she is so worth it. She brings so much joy into our home and in other people's lives as well. Life is hard, but we still go through it so that we may have joy.
PS- Good luck reading this, I'm not even going to edit it. I am going to bed. I was hoping Todd would be home by now, but I am realizing that it may not happen for several hours and I am tired and exhausted. Good night
1 comment:
Love reading about your family. You inspire me! Your boys seem wonderful and although I haven't seen you for many many years I feel close to your family some how. I'm grateful for technology for that reason.
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