We are into our third week of school for Ainsley and the fourth (is that true?!) week of school for Natalie. September is going, going, and (almost) gone. Some have asked what our new schedule is and how I fit in my hospital visits between running the girls to school and ballet. So, here is a sample week:
Mondays, Wednesdays, and Fridays –
I wake up at 6 a.m. to work out and get in the shower by 7 a.m. I get myself ready, make the girls lunches, and tell them to get ready (they have charts they complete that walks them through the process) until 8 a.m. At 8:10, I take Natalie to school. I am home and pumping at 8:30 a.m. If I have time, I try to do the dishes or throw in a load of laundry before Ainsley and I leave the house at 9:20 a.m. She is to school by 9:30 a.m. If I have any local errands I run them before heading into the hospital.
I arrive at the hospital between 10:30 and 11:30 a.m. and am able to visit with Ryan until 1:45 p.m. I spend that time playing with him (if he is awake), rubbing his body (even if he is asleep), getting report from the nurse (he/she basically goes over what was said in rounds, the plan for the day, and how Ryan faired over night and so far that day). Sometimes one of the unit doctors will check in if they haven’t spoken with me for a few days or if there is some big change in the plan. The social worker typically checks in a few times a week to make sure I’m okay and have everything I need (she updates Ryan’s beads of courage, gives me a parking letter, and makes sure I’m handling things emotionally). We’ve now talked for five months (over a seven month period) several times a week so we also chat about the goings on in her life too.
When the stars align, I might also see someone from plastics (who is checking Ryan’s incision) or Dr. D (Ryan’s cardiologist), or any of the other doctors who have worked on Ryan’s case as they move through the CICU. Again, we’re long-termers so I’ve gotten to know several staff and we catch each other up on kids, weekends, spouses, etc.
We also have visits from random folks. Ryan participated twice in a test for new and improved equipment, he’s been the subject of two nursing projects – one for a group of students and another for staff nurses who present interesting cases at an annual nurses’ conference. He’s had medical students come through to find out more about his condition and see ectopic cordis in person instead of just in a book. And others who are simply curious.
Once every few weeks I sit and string Ryan’s beads. Some days I read a few pages of a book. I take time to pump, sometimes once sometimes twice depending on the day and how long I’m there. Sometimes I take my computer and write.
But, if Ryan is awake – I spend most the time sitting by his bed or chatting with the nurse (so he can hear my voice and it’s polite!).
At 1:45 I pack up and head to the car so I can be on the road by 2 p.m. An hour later I pull up to my friend’s house to pick up Ainsley (who goes home with her after preschool) and then hurry over to pick up Natalie from school by 3:20. On Mondays we head straight to ballet and get home at dinner time. The other days we come home.
Tuesdays and Thursdays are slightly less hectic although there are still lunches to be made. Tuesdays we have to leave Ryan’s room by 1:45 as well to get Ainsley to ballet by 3 p.m. Thursdays we leave between 3:30 and 4 so we can miss the bulk of traffic.
Then the normal evening routine. On Mondays and Tuesdays if I am not scheduled to receive a meal from friends I try to put a meal in the crock pot (I receive 1-3 meals a week and have for the last seven months – an absolute blessing). Other nights, I fix dinner while the girls play. The girls and I eat around 5, baths at 6, reading from 6:30-7 and lights out right after that.
If I’m not utterly exhausted I do what the rest of you do… complete house projects, do laundry, do dishes, clean up the house, read, write, surf the net (I’m addicted to several blogs), and spend time with Henry. My last pumping session is 10:30 p.m. and my lights go out anywhere between 11 and midnight.
The little things I do that keep me on top of my game are: planning a menu at the beginning of the week and having those ingredients on hand, employing the use of charts for the girls to get ready with, and laying out my workout clothes the night before so I don’t make a lot of noise in the early mornings to wake up the kids.
What tricks do you use to keep you on top of your game?
(c) 2016 Leighann Marquiss
Comments (10)
Leighann it is a good thing you are young, so that you can keep up that hectic pace,…bless your heart. I know this has been a very long journey and such a hard time of your life. I pray for you sweet friend…and for your family, and of course for little Ryan. He is a true miracle.
I am so glad that people are continuing to minister to you by bringing meals. I hope that love and care continues. It reminds me of the people who ministered to our family the three times we lost our grandchildren.
Life is hard, yet God is always good, and I praise Him.
Linda @ Truthful Tidbits
i loved reading your schedule. (but we know what a freak i am about schedules :-)) you are just doing so great. making time for everyone…including yourself! wise woman!!!
On top of my game?? Anyone who knows me, knows I’m usually a few steps behind in the game…haha! I just try to keep my head above water usually. And keep my sanity while I’m at it. God blessed you with organizational skills that I only dream about. I’m glad that you have things organized, Leighann. You have a very busy schedule, and I pray it gets a little easier for you all soon. Love and hugs…
Richelle
You’re amazing Leighann! Keep up the good work! 🙂 Will continue to pray 4 u and your family.
What I do is similar to what you do, I make “to-do-lists” for the week of the major events I know are happening that week, I plan ahead with what I will wear to work for the week and lay them out, I have my work bag & purse by the chair, keys laid out ready to go in the morning! Awesomeness! 🙂
Great job Leighann, I love schedules although somehow I don’t do so well keeping them but life is so much easier when we do stick to one. It’s hard to make time for everyone and you are managing, thanks for sharing, continual prayers going your way.
wow, crazy times….
You are just an amazing person!!! I cant believe how planned out everything is and that you guys are able to follow it!!!
Jessica
There is no way I could go to bed at midnight and get up at 6! *bows*
And the pumping thing… I wonder if you have any idea how huge this is: how many moms don’t make it this long, how hard it is to maintain a milk supply when you don’t have a baby to actually put to the breast. I know first hand how time consuming it is. Thanks to a crappy pump I only lasted a month and if I *had* lasted longer I eventually would have been able to nurse her because she did eventually develop the rooting and latching on reflex. Keep up the good work! There are few things Ryan needs more than that milk!
I enjoy scheduling as well! My tricks of the trade are Mangers of their Homes by the Maxwells , and donnayoung.org. She has a great lists! Monthly planners for homeschooling and household planning. It has been a life saver for me. I also have a chore chart for the girls. Velcro strips that have things like brush teeth, hair , help with laundry, make bed. Organized Home is also a good tool, but Donna Young has been more resourceful for me. Have a great day!
I feel exhausted just reading your schedule! Continue to pray for you!