Wednesday, June 25, 2014

Summer "break"

We are on week three of summer break and this is the first week of the three that we don't have appointments every day.  See, the reality of life with Tera is that days off means appointments with specialists that would otherwise require taking time off of work.  Most of the our winter, spring, and summer breaks have at least a few these appointments and while I'm lucky that I have the opportunity to schedule things during these times, it's hard to look forward to my time off with Tera when we spend so much of our time in offices.  Last week was the worst I think; dentist and blood draw on Monday, the DS clinic on Tuesday, therapy on Wednesday and Thursday, and literacy on Friday.  Fortunately, I think the worst of it is over and we can move on to more important parts of our summer like playing, running around like a lunatic, and snuggling; okay, maybe that last one is just wishful thinking on my part, but crazier things have happened.

One of the things I'm most focused on this summer is making sure we don't waste our time together.  While it is inevitable that things have to get done, like laundry, grocery shopping and other errands, house cleaning, and yard work, I'm trying to make sure we spend some time doing the things we've wanted to do.  So far since the weather has been nicer we've made it to the Botanic Gardens, parks, a wildlife conservatory, the Jelly Belly Factory (not our favorite adventure), and Monday, the Kohl Children's Museum.  Tera has played in her sandbox, yesterday we experimented with the sprinkler, and I made a few (two failed) sensory activities.

Surprisingly, while these things have been on my "list" since last summer, somehow the summer that I have the least energy is when I've checked the most things off.  With my current condition, I'm not sure how long I'll be able to do some of these things so I'm kind of the mindset to get whatever we can done before the possibility of my doctor telling me I really have to take it easy; which I don't do well with.

It's really hard to find a balance between fitting in things that I know will benefit her, and just trying to relax and have fun.  This is what a day with Tera is like: we're either out running errands or trying to do something fun, which is exhausting because she has to be supervised/strapped in every second or she takes off, or we're home and she's testing every limit, breaking new records as to how many times she can say no to whatever I'm asking her to do, or reaching for and throwing everything in sight.  She can have a day with no time outs, or we can have a day, like this morning, when she has two in twenty minutes and still shows no sign of cooperation.  I can try and suggest or try something new or fun at home and she loves it and does great, or within ten minutes I'm questioning my sanity.  Today my brilliant idea was to try and kill two birds with one stone and let her play outside which she always wants to do, and try and get some of the ten bags of mulch I have sitting in front of our house spread.  I was going to try and have her help, which is usually a great way to keep her engaged and usually helps with her behavior, but every time I told her we needed to get dressed she said no and I wasn't about to reward that with then letting her go outside.  Which then also meant she didn't get to play and I didn't get my mulch done.  On the plus side, I was able to start a load of laundry and put away two other loads while she was in a time out and confined to her room.

I found this a few weeks ago on Facebook:

I feel like this sums up many of my days at home with Tera.  I start off with these great things I think she'll love and memories we'll have when she gets older, and instead it turns into her throwing a tantrum and me feeling like I have no control of my child, or really, my life in general.  Which then in turn, makes me question how the hell I'm going to handle anything when there are two of them and one of me.

I can be so incredibly frustrated with her and then out of the blue she'll come up to me and look at me with those big beautiful eyes, and I'll try and remember for a minute how I could possibly have been so angry or frustrated with her.  And then usually within twenty minutes or so she reminds me once again.  This truly has been the most frustrating, exhausting job I have ever loved more than anything.  That kid's face, eyes, hands, hugs, kisses, curiosity, and accomplishments have forever changed me.  She is my biggest challenge, and so far, my greatest reward.



Thursday, June 12, 2014

Man we've been together for a while...

Today is our 10 year wedding anniversary.  I honestly can't believe it's been 10 years.  It really does feel like it was yesterday that Tom was making everyone tear up with his beautiful vows and now here we are with one beautiful daughter and another on the way.  But what's even harder to believe is that tomorrow we will celebrate our 17 year anniversary of being together.  Yes I said 17 years.  Tom and I went on our first date on June 13, 1997 and we've (at least I've) never once looked back.



When we stood at that park all those years ago, me working up the courage to ask if he had actually broken up with his girlfriend or if we were just hanging out as friends, I never once imagined us breaking up.  As the weeks and months passed, there was just never a scenario that I came up with that would end us.  At the end of our first year together we each went to our separate colleges and yet I still never imagined not being with him.  It was a hard year apart, but we managed and at the end of that year I decided to change schools and relocate to his in Michigan.  I wasn't happy at the school I was at, I was very stressed, and I had changed majors to teaching and felt that Western Michigan had more to offer me.  We both graduated on time with great degrees, and shortly after graduation we were both employed and ready to start the next chapter of our lives.


When we moved in together, it should have been more of an adjustment.  I am insanely clean and neat and neurotic and Tom, while not a disaster, just didn't care as much.  But again, it worked for us.  He teased me incessantly about my compulsions and I gave him a hard time about everything else.

Then after six years together, we decided to go to New Orleans on our first grown up trip.  While there, he happened to propose to me and in what has become our favorite place to be, with a beautiful ring that did not cost a year's salary or even a month's (as instructed ahead of time by me), I said yes.

After a year of renting we decided it was a better move financially to buy a townhouse, so we did.  And we got a dog, with some issues of course, and we planned our wedding.  It was not extravagant, but it was very "us"; complete with a black wedding cake, hand picked music, a giant gong, and an extra hour of open bar during which my new husband took full advantage of the shots.

And life went on again.  We bought a house, had a neurotic dog and cat, and dealt with the day to day issues of paying bills, making home improvements, planning trips, working, saving for retirement, and trying to find time to enjoy ourselves.  And through it all, our life has never seemed mundane to me.  Sure we went out on the weekends a little less than we had, but we spent time together and we enjoyed each other.  I've never felt like I needed time away from him and I really do look forward to all the time that we do spend together.

We had always said we wanted at least one kid and for many years, that was all we wanted.  Our big plan had been to wait until 30 so we could enjoy our time as non-parent adults for a while.  On our five year anniversary Tom told me he was ready in the next year for parenthood and one year later I was pregnant with Tera.

The morning of February 26, 2011 could have been one of the biggest tests of our entire relationship, but instead Tera's birth and diagnosis made us stronger than we had ever been.  We supported each other, were alternately the one that fell apart and the one that held it together, and helped each other to get past the initial fear and sadness so that we could try and be the best parents we could be to our new baby girl.


And then we made the decision to have one more.  And while this pregnancy has been a little more stressful than the one with Tera, and while we constantly question how we will handle another kid when the one we have currently can be a bit exhausting, we both know that whatever happens, we can and will handle it.

And so on this 10 year/17 year anniversary, Tom is playing hockey and I'm pregnant.  We don't have any big plans because honestly, I can't stay up very late these days and drinking has been removed my itinerary for the time being.  So I'll go to bed soon, he'll work tomorrow (maybe we'll get coffee together), and then maybe tomorrow night we'll order in from someplace nicer than usual because we'll also have our first sweet girl with us.  We don't have to have big plans, but I feel like on this fairly important anniversary it's important for us to take time to acknowledge that it's a special day.  We've now spent half of our lives together  and one of the things that has kept us this strong all these years is not getting complacent about our relationship.  It's not just another day, it's our special day and on this special day I want to take one more opportunity to thank my wonderful husband for just being him, because honestly that sums up most everything I need and love about him.  

Monday, June 9, 2014

School's out for summer!

Phewww! I think I might finally find some time to breathe again! School is out, the Gigi's 5K run is over, and I might, just might, finally find the time to put into words all the thoughts that have been swimming around my head for the past few weeks.  Of course, this damn pregnancy brain means I probably won't remember half of what I was thinking about that I wanted to share, but I'll see how it goes.

Right now my thoughts are on the Gigi's event that just happened.  It's a great event and it brings our family and friends together, but it is a lot of work.  And honestly, until today, I was forgetting at times the whole point of why we do it.  It's something I've talked about quite frequently here, but it hasn't changed.  Tera has Down Syndrome.  I say it all the time to new acquaintances, therapists, teachers, doctors, etc., but I don't always think about what it means; to her and to us.  I know what it means of course, we live it, but because it's such a part of our life, it's only sometimes that it really occurs to me what it means.  And this is neither good nor bad.  I don't want it to be the only thing anybody thinks about when they see or meet Tera, but I also sometimes need to remember that it does make her different.


And it does happen.  Saturday night as we listened to Tera crying in her room in what was a bit of a rough night for her, Tom asked out loud, "Can't anything be easy for her?" I wasn't sure at the time if he meant that she tends to be challenging for us frequently, but many times it really does hit us both that this poor kid doesn't get much that comes easily to her.  At a friend's birthday party over the weekend as a few people were dragging out a pile of toys for her to play with I commented that it must be nice to be Tera.  And then I immediately retracted the statement, because while most of the time I don't think it really affects her that she works so hard, the fact that she does have to put forth so much effort for such little things sometimes, is really hard for us as parents to come to grips with.

Of course in many ways she is like any other three year old, but while many of her peers might spend their summers in swim lessons or learning a new sport, Tera will be in private speech therapy once a week, hippotherapy (which will be a separate speech session, but on a pony) once a week, and she will be starting the literacy program at Gigi's which will help her get ready for reading.  This is also her first summer without full time therapy which as her mom, is a relief for scheduling purposes but also makes me a little nervous because I don't want her to regress after all the progress she's made.  But I've searched out various sensory activities and we have more than enough strategies to be working on for speech.  So hopefully it just gives me a little more time to incorporate some of these new strategies into our daily routine.

Of course no summer with Tera would be complete without an array of doctor appointments.  Today was a recheck of a kidney ultrasound for something they thought they saw last year.  Nothing screams summer break like a trip to Evanston Hospital so Tera can try and sit still while they get as many images and measurements as possible.  And despite the fact that she did great, and of all the procedures she's been through this was pretty low key, I still feel a pain in my heart when I have to hold her down so that she can endure yet another test.

Next week she has her first dentist appointment, her first trip to the Lutheran General Pediatric Down Syndrome Clinic, and a check up with her endocrinologist (which we still have to get blood drawn for).  And then I have an OB check up on Thursday (which I'm pretty excited for since I get to guzzle some crappy orange liquid for so they can do my glucose test).

But through it all, I still consider myself pretty lucky that it's not worse.  And that I have a job that allows me to spend this time, doctor appointments or not, with my daughter.  That I'll have some special Momma/Tera time before the baby comes, and that I get to actually be a full time mom (at least for a few months) instead of a working mom trying to fit it all in but never quite getting there.

And hopefully this time off will allow me to recharge my batteries, reset my priorities, and just plain rest.