SPRING CLEANING IS HERE!!! This weekend Aaron and I spent a lot time cleaning out the garage, the basement extra bedroom, packing away all the Christmas stuff, going through last year’s paperwork, filing taxes and all of that fun adulting stuff you have to do. It’s not always that fun, but has to be done. In our purge I came across something that made me stop and take an hour (okay 3!) and go through. Two giant totes in the twins’ room filled with love.
How can a tote be filled with love you may ask? Well in these totes there are handmade cards; store bought cards; typed notes on letterhead; hand written notes from the elderly; hand written notes from small children; coloring book pages colored by children; notes on post-its, on note paper, on lined paper, on napkins; messages from churches; prayer books from prayer warriors; prayer blankets; guardian angels colored and strung together crafted by an elementary class that were hung in the girls’ hospital room; posters with signatures from sports teams that were praying and thinking of the girls; trinkets of guardian angels; necklaces for the twins; long letters to me, Teagan, the twins and Aaron; letters and photos from kids who held lemonade stands, or bake sales and donated their money to our family; a card from a family who decided to not have Christmas gifts this year and donate that money to our family; Items not in the totes, but I know were sent and received were donations of $5 dollars and donations of $5000 dollars and everywhere in between; teddy bears for the girls (all 3 of them); dolls and toys for the girls (all 3 of them) clothes; headbands; books; goodies for me and Aaron; I could go on and on but I think you get the picture.
These totes are filled with love. Love for the twins, love for Aaron, love for Teagan and love for myself. Some from people we know, a lot from people we don’t. I spent hours this weekend reading through all of this love. I sat down and read every single word that was in these totes with tears streaming down my face. I do not think that I could every express how grateful we are as a family. How thankful we are to everyone who has supported us on our journey thus far. I REALLY wish that I could sit down and personally write a special thank you note to each and every person who has supported us with prayer, with written words, financially, and everything else, but that wouldn’t be possible right now. So this is the best way I know how to show our gratitude.
Thank you to everyone who wrote, donated, prayed, sent positive thoughts and vibes, sent gifts to any of us, donated items to the auctions, donated time to organizing and running fundraisers, donated food for the meal train, donated food from your place of business, donated services (whatever they may be) to anyone in our family and everything else that I could possibly be forgetting. Thank you to our current community, our past communities, our online communities, and our care team. Thank you to the strangers that have now become our friends. Without the LOVE and support we have received from all of you so far, we would not be where we are.
Thank you
XOXO
Abby
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Since we’ve come home from the hospital with the girls from their cancer treatment, I get asked a lot of questions which I’m usually happy to answer. But the question I get asked the most is “I bet you’re so happy to be home!!” To which I smile and nod. Or say “yeah, it’s pretty nice.” The truth is, although I AM happy to be home, I’m not as happy as people think I should be. Hell, I’m not even as happy as I think I should be. And I feel guilty about that.
Let me go back and repeat. I AM HAPPY. I love being home in my house with my girls and all my things. I love being out of the sterile hospital room. I love being home together as a family of 5. Yes. I love all of that. That being said, being home alone all day with 2 medically complex babes that can’t talk but require hours of working with them, is exhausting. And on top of that, I’m still learning how to be a stay at home mom. If I’m being honest here, that was never a dream of mine. I’ve held a job since I was 15 years old so to lose my identity as a working mom, as a career woman, has been a little challenging for me to get used to.
Every morning we get up, start a feed at 6:30 am. Then hope and pray they keep it down so that at 8:30 when you weigh them, their weight has gone up. Change diapers, change clothes, clean up any puke, start laundry so puke filled rock n plays are clean for the next feed (this happens after every feed, so, 4 times a day), get them in high chairs, spend an hour working on oral feeds, hook them up to some formula while they are eating, unhook them from feeds and put back in rock n plays for remainder of feed, clean up cereal, baby food mess and clean both high chairs to be ready in 2.5 hours for another hour of oral feeds.
After their mid-morning tube feed and tiny cat nap we do a lot of tummy time and therapies on their belly. Kendal is doing pretty well in terms of motor development but Kenedi is a bit behind. Although she can sit up on her own, at 10 months, while on her belly she still won’t lift up her head. So we spend between 1-2 hours working on the floor, playing, rolling, trying to push our head off the ground, then hop back in the high chair for more food practice, followed by their long afternoon nap. During this time I get dishes done, laundry done, everything cleaned up from the morning, any other cleaning that needs to be done, phone calls and appointments set up, ordering of feeding supplies, calls to our dietician with updates, etc., (sometimes I can sneak in a 30 minute workout here if they sleep long enough!) and start dinner for the rest of the fam. And I do all of this usually without speaking to anyone except the girls. Yes, therapies come into the house a few days a week which is awesome, but most of the time it’s just me and the twins.
When Aaron and Teags get home it’s usually busy with dinner for us 3 and then a different dinner for the girls, cleaning up, showers or bath if necessary, some quality time with Teagan before she goes to bed at 8, some play time with the twins for her, then Teagan’s 30 minute bedtime routine (PLEASE tell me this gets easier with her age – she’s such a staller right now! “I have to go potty” “I need a drink” “I need another hug” “I wanna cuddle” “mommy I love you”), then get the twins ready for bed and their final feed started between 7-8, clean up any puke and change them after, then put them in their cribs at 10 and mosey up to bed myself. Also thrown in here throughout the day are all the different medications the girls are taking, each one taking a different dose of each med. I have so many alarms set on my phone these days that I don’t even remember what they are for when they go off until I read the note I’ve written for it.
**I just want to note in here, hats off to stay at home moms who do it all. Seriously, you all are my hero! Teagan goes to daycare and I can’t imagine throwing her into our mix during the day**
Not only am I dealing with a new life at home, I’m dealing with the grief of losing my old life. I’m grieving the loss of my twins’ infantile months, years. I’m grieving the loss of their health, the loss of a year of Teagan’s life being normal, the loss of my normal life. I’m learning how to live in the now, very different world. Not just the cancer world, but the life after cancer world.
I also kinda miss the hospital a little bit. I miss the comfort of those 4 sterile walls, the comfort of being able to push a button and get help whenever necessary. I miss having the ability to take a shower without worrying if someone was pulling out an NG tube, puking everywhere, or screaming their head off while I was in there. I miss the conversation with our nurses. I’ve said it before but our team became our family and I miss seeing them every day. They went through the hardest days with us and they understand me. Understand the girls. They understand when I say that I’m frustrated about their eating and they wouldn’t judge if I told them “I was crying again because the girls wouldn’t take their bottles.” They wouldn’t judge me if I told them that “I just needed a minute to myself because the whining is driving me crazy”. They understand the demands that come with taking care of the girls and their medical issues. And they would understand if I told them that even though I am SO HAPPY and blessed that my girls are doing relatively well, I’m just still mad that they aren’t “normal”. I’m mad that they won’t drink from a bottle. I’m just mad that this happened. And I’m sick of being patient waiting for these lasting chemo affects to wear off. They would not judge me and they would understand.
Me and my crew <3
I am so blessed to be able to stay home with my girls. I’m so grateful to be able to do that and to work them constantly to get them back up to speed developmentally. I’m not unhappy about that at all. All I’m saying is please don’t judge me when my response to the question/statement “you must be so happy to be home!” isn’t an overwhelming “YES!” because it’s just hard. But then again, what part of parenting is easy?
XOXO,
Abby
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