December Weekly. 13-18

Ugh.

Let’s just sum up this week with sickness. Doctor Visits. Pharmacies. And lots of bodily fluids.

So glad it’s over. both the week and the sickness. Well, ok, maybe not the week so much. It was a week I REALLY needed to be doing STUFF, you know? like christmas stuff. Get in the Christmas Spirit stuff. Keep my kids in clean laundry type of stuff. But none of that got done. Almost none of it. AFter spending most of the morning at Urgent Care last Monday with Kealey, we went to a dear friend’s house to meet another dear friend who I had never met before, and her awesome family. When we walked in, we were treated to an awesome “cake” of cupcakes (perfect!!!!) for Miss Kendall, as a birthday celebration for her. I cannot express to you what this meant to me. We really had not considered having a huge celebration this year mostly because of the awkwardness surrounding what had happened with my job (and therefore our church family), and also because of the cost of doing such a thing was just not in the budget. We ALWAYS want to celebrate her birthday in a big way. We take no milestone, big or small, for granted around here. But this year, we just couldn’t do it. We had a small celebration with my family on her and her poppa’s birthday. But we didn’t do cake and candles just for her.

Watching her face light up at the sight of those candles, and watching her get it – that she had to blow and huff and puff and blow those candles out and THEN she could have a little bit of cupcake with frosting was just awesome. As Natalie put in the caption of the photo of Kendall blowing out the candles : “Basically everyone in the room was blowing and somehow it got the job done.” It was so true. We were all just coaching her along – blow baby blow!!!  – and those candles went out and we cheered like we were at a superbowl game and the look on her face at the accomplishment of that will stay with me forever. So, those of you who opened your home and your hearts to give Kendall a party that day – thank you from the bottom of my heart. I truly cannot even put into words what that day meant to me, to us.

  Tuesday we laid low to try to get Kealey better, which obviously didn’t work because Wednesday she was right back with the puking so back to the real peds we went. The doc we saw made a very compelling case for this possibly being mono, which was of course enough to send me into near panic mode at the thought of trying to keep kendall mono free. And while I know that conventional wisdom would dictate that most kids as young as kealey, or kendall especially, should not react to mono as symptomatically as kealey was, and that kendall would “probably” be ok, you have obviously not met kendall. and she has obviously not met “conventional wisdom”. Her nurse and I always joke that Kendall likes to read the textbook (as in, the textbook that tells docs what kids SHOULD do in any given medical situation), and then she likes to take that textbook and stomp on it, rip the pages out, and fling it out the window. So yeah, i was scared of what she would do with a very weak immune system and an energy metabolism disorder with a notoriously energy zapping, immune-blasting virus. Probably not a good combo. So in spite of Kealey being less than enthused about the 5-vial lab draw necessary to run the mono panel and kidney/liver enzymes, we did it. We had an amazing lab tech who helped make it better/easier, who i told was definitely being called to the scene next time we need to run a bunch of labs on kendall quinn!

tuesday nite ben and I also went to the visitation for a beautiful little angel named Makayla. She was the surviving twin of  a pregnancy that was horribly hard on her mom. Makayla was born almost a full month before her twin sister was. Makiya was “the strong one”, the one expected to survive. Makayla was essentially not expected to survive much past the emergency C-section to bring her into this world, and allow her sister the opportunity to grow a little longer in the womb. The story is amazing and I am not doing it justice. But in a weird twist – Makiya ended up only surviving a few days past her birth day, while Makayla continued to battle and fight through the odds, surprising everyone with her strength and determination. She was living at home, albeit with a trach and ventilator for breathing help, a central line for meds and fluids, and a tube for feeds. This past May, I was honored to be able to go and take her first professional pictures ever, just in time for her 2nd birthday celebration. Then, this past week, in a tragic accident, her trach was being replaced by a nurse, and I don’t quite understand all the details of what happened, but Makayla was without oxygen for quite some time, and was determined to be brain dead by the time she arrived at the hospital. I am so saddened for her mother, who has endured so much loss in such a short time. She works in  a department concurrent with Ben’s, which is how I got put in touch with her. she is an amazing woman, and I pray for her and her family during this time, that His love would hold her up and get her through this nightmare. As Ben and I were leaving, we were somberly quiet. And he told me that he was thinking “A child should have to bury their parents. It isn’t supposed to be the other way around.” and he asked me what i was thinking. And all I could choke out was that “they aren’t supposed to make caskets that little”. And this led to a very hard, very horrible, and yet very good discussion for us about Kendall, and her future care, and how we have to be even more vigilant to keep her doing so well, keep her healthy, be proactive enough to ward off troubles and yet not so proactive that we do more damage with interventions. It is a fine line. And one we committed to walking together. Not just this past Tuesday nite, but 13 and a half years ago, in sickness and in health, for better or worse. It was a tough nite, tough conversation, but one that I am oh so glad we had.

Please keep Monica (mom of Makayla and Makiya) in your prayers.

Thursday I was supposed to leave early in the morning to go downtown for a nice “relaxing” day of shopping, wandering on the mag mile, just doing anything that occurred to me – then going out for a nice dinner with Ben and his manager and coworkers that nite, spending the nite in the city and returning friday afternoon. We tried this last year too, and while I was able to get there eventually, it was not without major hitches. This year wasn’t much different. But I did make it. After having to call the Naperville Police Dept and beg them to not tow my car cause i parked in non-overnite parking at the train station. Thank you to my absolutely amazing mom who sacrificed a lot of her own time to come down to watch the girls overnite so I could go and enjoy this time and just get away from the day to day stuff. It was a very fun time, even if it didn’t involve about 85% of what I had wanted to have fun doing. There will be times for that someday!

Friday we came back home after grabbing a quick lunch at the best restaurant in the world (ok, maybe not the world. But at least our little corner of it! And i know my father in law is rolling his eyes if he actually clicked that link because he, and most other people, do not understand my obsession with this place. It’s the sauce! you have to make the sauce just right! And the breaddddd!!! oh my gosh the roti prata….don’t get me started.)

It was good to see the babies again Friday nite – felt like I hadn’t seen them hardly at all all week! Because we were both so tired from just a long week, we didn’t do anything spectacularly fun – we just kind of chilled. Saturday I had a wedding rehearsal for photography, and in the three hours I was gone, Ben managed to somehow completely rearrange the TV room furniture. Last weekend it was Kendall’s room. I swear you cannot leave that kid alone. one of these days I might come home to him having lifted the house off its foundation and rearranging the whole thing. (come to think of it….that might not be a bad idea…I hate how we bake in the summer and freeze in the winter cause of the orientation of the house…..) I digress.

All in all – it was just a long week. A very, very very long week.

And now I am once again only a few days behind, instead of a week!!!! YAY me!

terra