Friday, November 22, 2013

Remembering the early days...

Things have been a little crazy around the Theodore house these past two weeks (what else is new).  We've had what seems like an endless number of doctor and therapy appointments and I am so relieved it's a short week at work followed by one of my favorite holiday weekends.  In the midst of all this craziness, for some reason I've been paying more attention to the digital frames we have around our house.  Right after Tera was born I ordered one for our living room and the very first pictures I loaded on it were the ones from her first week.  I didn't have a memory card at the time so I loaded them directly onto the frame itself and every once in a while, the frame seems to revert to its internal memory instead of the card and it gets stuck on a loop of those very early pictures of Tera.

Sometimes when those early pictures cycle through I don't think twice about them except of course to notice how little she once was.  But other times, like recently, those pictures take me right back to those early days and I feel like I am experiencing all of the emotions all over again. I'm sure many people in our same situation want to forget about many of the details of those first days and weeks.  But I don't ever want to forget any part of it.

 I still relive the doctor delivering the news to us and while I don't care for remembering the pain I felt at the time, it was all a part of what has become one of the best things in our life.  I don't want to forget any of it.  I want to remember the joy of holding her for the first time, the excitement of everyone who came to see her, and even the closeness that Tom and I felt during that time.  It sounds strange, but I want to remember those people that I was there to tell (Tom took care of so much of delivering the news to visitors after the first day).  I want to remember all of the emails and Facebook posts congratulating us and telling us how beautiful she was and offering help of varying kinds, but above all else, offering unconditional love for our new daughter.  I want to remember bringing select family members and friends into the NICU to hold her and see her.  I want to remember having to move all the cords and wires just to hold her close to me.

I want to remember the smell of her and how warm her little body was as I held her, I want to remember the day we walked into the NICU together and the nurse telling us that Tera had pulled out her own NG tube (for feeding) and that they had decided to trust our little newborn and not put it back in so we could see how she would do on her own.  I want to remember the day we arrived to finally take her home and Tom being amazed that he could actually walk around with her because she wasn't hooked up to anything.

I want to remember getting her in the car and sitting in the back seat with her while Tom drove us to pick up lunch and then head home.  I want to remember that it was snowing and that Tom kept asking me if she was okay and that he wished he could see her too.  I want to remember getting home and finally feeling like we could start our life as a family.  I want to remember the early visitors; those family members that had been dying to hold her without wires and just see her so they would know she was home and okay.

But there are other things from the first weeks and months that I want to remember too.  I want to remember feeling unusually calm during the first few weeks.  I think I was too preoccupied with her diagnosis to really worry about anything else and of all the things I've worried about in life and the things I've questioned about myself, taking care of Tera was not one of those things.  I just wanted to hold her, feel her, smell her, kiss her, and snuggle her.

I want to remember the way that Tom took care of Tera and I.  He forced me to drink enough water, take my pain medication, help me keep track of when Tera ate, when I pumped, and when those things had to take place next.  I want to remember that I could not have loved him any more during that time if I tried.

There are some good and some bad things I always want to remember.  I want to remember them both so that when more bad things happen I can remember the good times, and so that when the good times are happening, I remember to appreciate them that much more.

Saturday, November 16, 2013

The Bat Cave

I love my little family.  My husband and my daughter amaze me on an almost daily basis; for very different reasons obviously, but they both do.
Let me start with my husband.  A few months back, I casually suggested that letting Tera and her friends use our crawl space as a play area could be kind of cool. To clarify, our crawlspace is not your average crawlspace.  For one, it covers the entire area of our living room and kitchen so it's pretty big.  Also, the owners before us put in plywood flooring and lighting throughout the whole area so it's actually kind of nice.  Anyway, Tom took that idea and let his imagination run and has now started construction on what will be Tera's very own Bat Cave.  The area is about 35 square feet, has it's own floor, drywall to separate it from the rest of the space down there, will have it's own lighting, and currently has a 31" Batman figure taking up residence in an "alcove" on the back wall.  And it's not done yet.  He is planning on mounting our old laptops on the walls; various knobs, buttons, and "controls"; hooks with her own capes hanging on them, vinyl decals with Batman logos, and possibly a Batman bean bag chair.  

What I find really entertaining is that he keeps stopping along the way and asking me if he's crazy for doing all this.  Crazy? Maybe a little, but it's also one of the coolest things a dad can do for his kid (and it's even funnier when it's for a daughter).  He's already spent hours working on this project, and it's something he's really excited about.  

I love that he's excited about it, I love that he's doing it for Tera, and I love that she's already excited about it too.  Among the words in her limited vocabulary is an approximation for Batman.  This afternoon when she woke up from her nap, Tom had finally gotten the area to a point of her being able to go in safely.  Since we first showed her the space this afternoon, she has asked repeatedly to go see "Batman" (who she loves to give kisses and hugs to).  

And that is just one of the many, many reasons why I love my husband and one of the many reasons why he is such an amazing dad.  

Now, Tera amazes me all the time with what she is able to do and how she affects people.  She is quite a magnet for people and I won't lie when I say I constantly question if it's because she has Down Syndrome.  For the most part, I don't really care why people are drawn to her or how it is she can make a string of strangers smile at her while she waves to them.  She can work a room and leave people talking about that little girl that never stopped moving and waving.  And if they happen to tell someone else that they had the incredible opportunity to interact with an adorable little girl who happens to have Down Syndrome, why should that bother me? I have watched people walk through a store without cracking a smile once; until Tera reaches out and waves enthusiastically and maybe even blows a kiss to them and then watch as they all of a sudden break out in a smile.  I have referred to her as a DS ambassador at many different events, and I hope that I can continue to see that as a positive thing.

I'm still working on my feelings about various topics relating to DS.  I'm still getting used to people identifying Tera as having DS.  I still don't know if it bothers me that people can see it, or if I know that because she's so damn adorable people can't help but look at her.  On good days I'm positive about it, and on bad days I remind myself that it doesn't matter what anyone else thinks.  And everyday, I know that she's one of the few kids anywhere that will have her own Bat Cave very soon.    

Friday, November 8, 2013

A big warm welcome back to our old friend pnuemonia...

Well, Tera made it seven months without the dreaded "p" word, but as the saying goes, all good things must come to an end.  I had actually hoped to share a much more positive post earlier in the week, but as typically happens when pneumonia hits, it wears down the whole family.  Tom and I spent most nights this week prepping for the types of nights we've had before when she's had pneumonia.  We keep the thermometer near, a bowl for throwing up, her humidifier is going, and then we try and go to bed early in case we're up half the night or end up having to take her to the hospital.

I have to say, this one took us completely by surprise.  She just coughed for the first time this past Sunday morning.  There was no cold or sinus infection preceding it this time.  She coughed a few times on Sunday and ran a fever for most of the day.  Monday she threw up twice, also ran a fever, didn't have a huge appetite, but was otherwise fine.  Tuesday she stayed with my in laws since she still had a fever on Monday, but was fine for most of Tuesday.  Tuesday night she started running a fever again so she stayed with them on Wednesday.  That's when it went downhill.  She threw up twice at home Wednesday morning, three more times at my in laws, and was completely lethargic all day.  She ate basically nothing all day.  So Wednesday afternoon I took her in to the doctor where I got the very unexpected diagnosis of bilateral pneumonia.

We ended up taking her in that evening for the chest x-ray to get that out of the way, filled her prescription, and headed home.  Thursday morning I stayed home with her and Tom came home at noon so I could go back to work for parent-teacher conferences.  Then when I got home at 9:15 pm, he got on a call until 11:30 and then came to bed.  This morning I got up and left before they were even awake and Tom stayed with her and worked from home.  Then I came home, we got dinner, and now he's leaving for hockey. I'm exhausted just thinking about it.  But on the plus side, she's slept better at night than she usually does when she's this sick.   Tom had said she was finally eating some normal food again today and despite the fact that she put up a huge fight to take a nap, was actually fairly normal.  Then of course we get to 6:30 pm tonight and her fever goes back up to 100.5 and she throws up again.

Plus sides? I don't have to take her swimming in the really cold pool tomorrow morning, she's been super snuggly all week, and she's not in the hospital.

I'm completely exhausted from being at work until 8:30 last night and from all the events this week, but tonight is also one of the few nights I have to just do what I want.  I'm not going to grade anything, I'm not paying bills.  I just want to write my post, turn on some reruns, and browse Pinterest.  Is that too much to ask? It might be...

Before she got sick :)