Monday, August 31, 2015

Time: Love it or hate it?

Time.  What a wonderfully crazy, sad, stressful, enjoyable, too short, too long element of our lives.  Most of us are usually wishing it would speed up, slow down, have more of it, use it better, enjoy it more, and waste it less.  I know I feel all of these things, many times all in the same day.  

I look back on this summer and it doesn’t seem like it flew by, and yet last night it really hit me that I went from seeing my kids all day, to only a couple hours a day.  I get a little more time with Tera because I’m getting her ready and dropping her off after Tom and Zoey are already gone and then as a result of our new daycare arrangements, I’m usually the one taking her to therapies.  But then I put Zoey to bed while Tom puts Tera to bed so we get time with each of them.  But it’s not enough most nights.  Then we’re left with a little time for just the two of us to talk without the chaos of dinner, playing, and bedtimes before we ourselves are ready to collapse into bed.  I wish there were more hours in the day, but then I sometimes wonder how we’d make it through.  

I thought, as it would seem logical, that I would have more time to write this summer since I wasn’t working.  I think I managed two, maybe three posts.  I had ideas constantly.  There were so many things I was working through as a mom, a wife, and a professional that I wanted to get out, but there always seemed to be something more pressing that needed to be done (or a little face that need kissing or arms that needed hugging, or food, puke, pee or poop that needed cleaning up).  

The beginning of the summer was a rough transition for all of us as it was the first time I was home full time with both of them since Zoey had been born.  Then there were the preparations for Tera’s surgery and then the surgery and recovery.  As soon as she was recovered she started summer school.  There were behaviors to work through, sleep training that had to take place, potty training that has forever been going on, and the rest of life that happens. And by mid July, when I was still very tired from Zoey’s constant lack of sleep, Tera’s seemingly little progression on potty training, Zoey’s lack of weight gain, Tera’s ongoing behavior issues, and my inability to ever get to the gym, I was starting to feel very discouraged.  Then around early August, Zoey miraculously started sleeping through the night, we bit the bullet at home and had Tera wearing underwear instead of pull-ups and she was doing great, and we got Tera set up with a behavior therapist to help us help her be more successful.  I started doing little workouts at home and got to the gym once or twice, and Zoey started eating more of a variety of solids, dropped her bottles, and is drinking from a straw.  Progress!

Now we are all getting back into a routine and our time as a family is so much more precious.  And limited.  We get about two hours with Zoey, sometimes less depending on the night, and a little more with Tera.  The problem is that much of that time is spent getting ready for the next day.  We eat together, clean up, play for a little while, then start the getting ready for bed process.  By the time they are both in bed and we sit down, we have maybe an hour or two before we’re both exhausted and we go to bed and start it all over again the next day.  And then of course there are those nights when one or both kids is crabby or overtired and then it seems like the little quality time we do have together, isn’t so quality anymore.  But this is life.  We are luckier than a lot of people to have the time that we do and while the adage of, “they’re only young once, enjoy this time with them” can be irritating when you’re exhausted, stressed, and barely hanging on, we do try our best to make the most out of our time as a family.  

And then there's "me" time, which with my husband's help happens occasionally, but I’m still really working on taking time for myself. This is difficult for many parents, but I know that it will make me a better parent and role model for my daughters.  I come from a long line of women who overdo and while I don’t think that is going to stop anytime soon, I can continue to try and overcome the ongoing struggle of trying to balance what’s really important and trying to delegate what’s not.  

And what about the days, months, and years that pass in my kids' lives? As so many other parents, I struggle with wanting to freeze time and never forget those precious moments as babies and toddlers (the good ones of course, not the screaming, crying, waking up all the time ones). Zoey is our last baby and I want to enjoy every single cuddle, new tooth that pops up, milestone that she reaches, and new expression or sound that she makes. Especially given the very rough start that she had to her life. But at the same time, I'm so anxious to see what they will accomplish as they get older. Tera has made enormous strides this summer with her vocabulary and we're so incredibly proud of her. So how does one handle wanting to stop time and speed it up? I don't think you can ever reconcile those feelings, you just accept that they're there and live.

So maybe now that I have this beautiful, almost totally screened in room and my favorite seasons are approaching, I can try and force myself to set some time aside to write and enjoy the scenery.  I could maybe even, gasp, read before bed! But maybe just one thing at a time (see what I mean about overdoing?).

Tuesday, July 14, 2015

Happy 1st Birthday to our Little Zoester!

It's been quite a while, but being a full time mom of two kids with a crap ton of appointments (and who both prefer to annoy the hell out of each other) has taken up quite a lot of my time.  But down to the real reason for my post:  I'm on emotion overload right now.

A little over a year ago, Tom and I left the house around 12:30 at night because of the first major complication of my pregnancy with Zoey and I thought at the time, as the result of the very complete placenta previa I had been diagnosed with at 20 weeks.  I was 27 weeks pregnant.  Upon arriving at Highland Park Hospital, the nurses and doctor on call assured me that everything with Zoey was fine but that they would want to keep me overnight for observation and to make sure nothing else happened.  I was scheduled to have another ultrasound a few days later so the doctor moved up the appointment as long as I was there already.  At the ultrasound the next day the high-risk obstetrician confirmed everything was fine with the baby, but also discovered my complete placenta previa, that was unlikely to resolve, had resolved.  But so as not to get the easy way out, instead, they found that I had vasa previa instead.  I was placed on limited activity and told to come in immediately with any new complications.

Fast forward one week and a new, more serious complication came up.  I was sent directly to Evanston Hospital and at 8:43pm, our sweet, tiny, very fragile little Zoey was thrust into the world.  After I came out of the anesthesia, I was wheeled up into the ISCU and could place my arm through the protected opening in her incubator to touch her, but that was it.  I remember feeling very foggy about everything still and very much in disbelief that very all of a sudden, I was no longer pregnant.  She was so unbelievably small, and I felt fear and worry for her health, but they assured me she was okay.

The next week was a blur of scary news about Zoey, healing, missing my big girl so much my heart hurt, and visitors who were only able to see her through plastic.  After nine days, I was able to hold her and I thought my heart would stop.  I had never held something so small that was so very much alive and fighting.  After nine weeks, we finally were able to bring our baby home.

I wish I could say I've come to grips with what happened, but I know I have not.   This past month or so, I have spent a lot of time thinking about activities, events, and outings that we had while I was unknowingly only going to be pregnant for a few more weeks, instead of months.  I am very aware that she is truly here and relatively healthy, but it is an event that I will never forget, for both good and bad reasons.

One of the hard parts for me work through still, is not even all Zoey, it's the fear I felt during those hours leading up to my c-section, and then the very crazed few minutes right before they took her.  It went from watching and monitoring, to almost feeling out of the woods but knowing I was going to be there for a few days for observation, to all of a sudden knowing that something had to be done immediately.  Once the choice was made, it was very rushed, and controlled chaos.  I signed the form allowing the procedure, they wheeled me back, and I experienced more fear than I ever remember feeling before.  The day after Zoey was born, the anesthesiologist came to visit me and apologized for the emergency c-section.  He said they never prefer to have to put a patient completely under, but that the circumstances dictated that it had to happen.  While he was apologizing, I was thanking him because not only was I safe, and Zoey was safe, but if I had to remain awake while all that chaos was going on and while knowing it was dangerous, I don't know how I would have been able to handle it.

I've spent more time than I want to admit, asking, "why me? why us? why our baby?"  I know it doesn't change anything and I know that all things considered, she is doing great.  But I'm not always strong enough to accept those things.

On Saturday we celebrated Zoey's first year of life with many of our family and friends.  We celebrated with food that she isn't ready to eat yet, cake that she can't have yet (she tends to choke), and drinks that she obviously can't have for another 20 years... My sweet little 15 lb one year old has spent 10 weeks of her life in a hospital.  She spent almost five months straight, sick, and did much of it with a smile.  She has been crawling for a month, can climb the stairs, can drink from a straw, can pull herself up on anything, and has a tenacity matched only by her big sister.  She is determined, spunky, happy, loves her momma and daddy, adores her big sister, moves constantly, can get by on little sleep and food, and is a tiny little fighter with so much heart.  I get stopped multiple times every time we take her out, by strangers who comment on her beautiful huge blue eyes that are constantly taking in everything in.  

Zoey is in the company of some other fellow preemies that also amaze me.  These tiny little humans that have such a dangerous and heartbreaking start to life are forces to be reckoned with.  Don't ever underestimate the power of a preemie baby and the fight they have.  On the second day of Zoey's life, the neonatologist on call came into my room around 5:30am to tell us that Zoey's lung had collapsed.  They had had to insert a chest tube, but she was stable. The doctor told us that our little girl was feisty.  A few days later a different neonatologist told us the same thing.  And then a few days after that a nurse told us.  At that point I remember questioning how that feistiness would play out when she was a teenager, but they assured me that as a preemie, it was one of the best qualities she could have and they were right.  After nine weeks in the ISCU, Zoey came home; about three weeks before her due date.  After a very rocky, dangerous first week of life, she had few setbacks after that.  She had survived two lung collapses, a level 1/2 brain bleed, a PDA, hypothyroidism, slow weight gain, struggles to maintain her body temperature, and having to learn how to breathe and eat on her own.  She left the hospital at just under five pounds.  In the time she's been home, she's had RSV, pneumonia, six ear infections, tubes, and countless sinus and upper respiratory infections.  But aside from preferring the company of momma much of the time, you would never know the struggles she has endured.

One of the very difficult things for me to hear is of other people's first memories of their children.  Granted, our first few minutes with Tera were incredibly happy and of the typical variety, but that only lasted a short time before we were delivered her diagnosis.  And Zoey? Forget holding her and doing immediate skin to skin or nursing.  I didn't hold her until she was nine days old.  So every single story I read or hear about the importance of bonding during those first few moments is like a knife in my heart.  What effects will my poor baby feel with the loss of that initial bonding? Has that contributed to her separation anxiety now? And if not, than what? Why is all that emphasis placed on those first few minutes if it doesn't have long term effects?

I know I will never be able to change Zoey's start to life.  And I know she is here with us now.  But doesn't change the fact that I lost that time with my baby.  That somebody else was the first person to care for her and hold her.  That her first nutrition didn't come from me, or even a bottle from me, but a machine that delivered fluids because she wasn't ready for milk yet.

This is not meant to be sad.  I am celebrating Zoey's first year of life.  It's just what goes through my mind regularly and some of the things I still deal with.  But the rest of the time I just watch in amazement at everything she does.  At what she's overcome.  I try, difficult though it may be at times, to enjoy the minutes I have with her because I missed out on so many at the beginning.

The next time you see Zoey, whether in person or in pictures, don't feel sorry for what she's been through.  Be proud of what she's overcome.  Let her inspire you with her fight and her will.  And let her remind you that there are always things to be thankful for.  I know I am.

Friday, May 1, 2015

Quality time

This has been one of those weeks I just want to hug, kiss, and hold my kids and remind myself of how lucky we really are.  Beyond just the normal need to do this, we have friends whose little one is struggling and my heart has been absolutely breaking every day at the thought of what they’re going through.  

As much as I know that we really do have health struggles in our house, and I don’t need to diminish them because someone else’s are worse, it makes me so much more grateful that the surgeries that my girls are facing are pretty minor and routine.  

Last weekend was a little rough at our house.  Neither of the kids was sleeping great, my normally angelic, happy baby was a little crankier than usual, and then there’s the daily behavior struggles with Tera.  So when Zoey was up at 5:15 on Saturday and then at 4:50 on Sunday, I will admit I was a little frustrated.  But in those early hours of Sunday morning, as I fed Zoey in her room, I chose instead to focus on the fact that these baby days with her are getting shorter.  She’s getting pretty close to one (thought not much bigger) and the thought of these being my last baby days is difficult to deal with.  I already can’t believe she’s 9.5 months (she’ll be 7 months adjusted on Saturday) and the fact that two of those months were in the hospital, only to be followed by month after month after month of sickness, hasn’t made handling the passing of time in this first year any easier.  I feel like we’ve spent most of her life so far just treading water trying to keep our heads up.  

But in the end, whether it’s stressful time, sick time, or busy time, at least we have time together.  Some weekends fly by and I realize how much I enjoyed my time with my family and it makes it nearly impossible to go back to work.  And other times I realize that a whole weekend has passed and though we’ve been together, not much of the time spent was enjoyable, whether it be from illness, stress, or plans.  Both situations make Sunday nights and Monday mornings difficult for me.  

It’s a very difficult balance of time that families face.  Especially when one or both of the parents work.  You want quality time as a family, quality time to yourself, and quality time with your spouse.  And unfortunately, even in the best and healthiest of situations, that’s not easy.  Then you factor in real life with its sickness, chores, errands, and other commitments and it’s nearly impossible.  I’ve learned that I don’t much like some of the sentiments that float around social media regarding how you spend your time.  They go something like this:

Take time for yourself, you need it.

Take time for just you and your spouse, your marriage needs it.

Enjoy this time with your kids, they’re only little once and laundry can wait.  

Even just enjoy this time with your kids, they’re only little once (without the laundry commentary).

“They” say all these things and yet there never seems to be any instructions on how exactly to pull all that off.  And the one about enjoying your kids? Of course I do, but there are times when they also drive me nuts.  And I’m pretty sure that’s okay.  And all the advice about putting off household responsibilities and just doing whatever you want whenever you want? That’s great, if I had a laundry fairy, a dishes fairy, a cleaning fairy, and a taking care of the less than pleasant aspects of parenting fairy, but I don’t think I believe in fairies anymore as they certainly have not visited my house recently.   I’m not advocating always following a schedule or filling a weekend with cleaning instead of playing, but I’d also like my children to understand that there are things that need to be done.  And I also feel like dressing my children in clean clothes makes me a decent part as well…

So when talking about quality time? Yes, we all need family time, alone time, husband/wife time.  And when there isn’t time for all of them, I say, go with whichever one you need the most at that time.  This particular week I needed time with my girls and my husband.  It was a rough week at work, filled with sleepless nights due to Zoey being sick again and both kids awake on and off each night.  My mind is exhausted and filled with thoughts that won’t stop and my heart aches.  But I get to spend time with my family this weekend and don’t for a minute think I’ll be taking that for granted.  

Wednesday, April 22, 2015

The trauma of my birth experiences

Now that it’s taken me three weeks to write one post, I might as well start the next one in hopes that it might be done before May…

I belong to two very special groups (well, our family does really, but I belong to actual forums and Facebook groups): one for parents of kids with Down Syndrome and the other for parents of preemies.  I never imagined being a part of either group, but here we are.  

In my preemie group, there are a lot of articles that I come across (check this one out) about PTSD.  I know this a very real and clinical condition and I by no means try to make light of it.  But PTSD can be attributed to any type of trauma or stress that one experiences in life and I believe there are many preemie moms who genuinely have it.  Do I think I do? Probably not clinically, but there are still many pictures, stories, and memories that trigger real anxiety and depressing thoughts.

 And there are many times when I can say I experience those same feelings when I think about Tera’s birth.  Right up until about an hour after she was born, my pregnancy and labor were textbook normal (well, except the contractions being consistently five minutes apart, that never happened and is why I was totally ready to deliver by the time we got to the hospital).  No drugs, about six or seven pushes and there she was.  Our first born, screaming the way she was supposed to and although smaller than we had anticipated, absolutely perfect.  But pretty much everything after that was completely unexpected.  Her diagnosis, her six day stay in the NICU and then all the therapies, doctor visits, illnesses, and obstacles we’ve encountered since then.

There are strange things that would trigger my “flashbacks” to our hospital stay with Tera.  When I have returned to the portion of the hospital where Tera was born for visits with my doctor at the time (his office is located in the women’s hospital) I have passed by the waiting room where Tom delivered the news of Tera’s diagnosis to so many family and friends.  Then I pass by the waiting room where Tom and I camped out for several days after I was released while we visited Tera during the day until she came home.  When I stop in the bathrooms there, the smell of the soap reminded me of us having to scrub in before we could proceed to Tera’s crib in the NICU.  When I see the pictures of the three of us right after I delivered her, but before we knew of her diagnosis.  When I see the pictures of our family holding her that first day before we had told anyone.  

The pictures might be one of the hardest things for me.  I’m a picture person.  I want pictures of everything.  I love photography (though I’m not great at it), I love capturing memories of us with people, our kids with people, our kids with each other, us as a family, action shots, poses; I love it all.  I create cards with pictures, we have pictures all over our house, multiple digital frames, and I’m constantly in search of new ways to capture the emotions and love we have as a family.  But at the same time, they are very much a trigger for me.  

When Zoey was still in the NICU, we took the camera with all the time.  If I couldn’t have her at home, I wanted to catch as many images as possible to take home with us.  And now, looking back at those pictures, it reminds me just how small and fragile she was.  Someday when she’s much bigger it will seem so ridiculous that she was ever that small, but right now she’s still so petite and since she goes through long sick stretches, her weight gain is steady, but slow.  Which is another reminder of the incredibly rough and dangerous start that she had to life.  
The first picture Tom got of Zoey after she was delivered.

The first time I was able to touch Zoey.

The first time I was able to hold her at 9 days old.

My experience with Zoey was completely different from that of Tera’s, and has scarred me differently.  I have a hard time looking at maternity pictures of women with 28+ week bellies.  Pictures of newborns decorated so sweetly in hospital blankets in their little baskets remind me we didn’t get that (they tried to get some on the day she got discharged, but they didn’t turn out at all since she wasn’t actually a newborn anymore).  Each day that we’d go to the hospital to see her we’d see families going home with brand new healthy babies.  Moms who got to leave the hospital with their baby instead of leaving them behind for someone else to watch over.  

Having these two girls is the hardest thing I’ve ever done in my life.  Not their deliveries or the recoveries (I apparently heal like Wolverine), but everything after.  Tera’s behavior lately has become an almost constant source of stress and frustration and Zoey’s health issues don’t seem to ever resolve.  

I go through a lot of stretches of “why us?” while at the same time feeling so thankful for everything we have.  It’s very confusing to feel lucky and unlucky at the same time.  It’s completely exhausting to always be waiting for the bottom to drop out and knowing that it inevitably will.  Tom and I have heard, “it will get better” more times in the past four months than we care to admit. And you what? It hasn’t really gotten all that much better yet.  We’re still very much in the throes of Tera’s behavior issues and with Zoey’s three ear infections in two months, she is now scheduled to have tubes put in on May 15th, assuming she can stay healthy enough to have it done.  This is of course right around when we’re supposed to find out that Tera’s ENT will in fact want to remove her tonsils and adenoids, and possibly put tubes back in her ears and we’ll be scheduling that.  

Both procedures should result in less health issues for both of them, but it’s a lot of scheduling and knowing that both my kids will be undergoing, albeit minor, surgical procedures.  

So if I were to be asked how I feel about Tera’s diagnosis four years later and Zoey’s birth nine months later, my response would most likely be that I’m still not sure.  I don’t feel okay about it all and I still feel pretty shaken about a lot of it.  I’m not sure how I will feel on Zoey’s birthday this year as I relive the fear and panic of that afternoon and evening and how completely unprepared I was emotionally for her arrival.  I still haven’t had time to recover from that as we then spent two months in the hospital with her and then a LOT of sickness since her homecoming.  I don’t know when I’ll have the time to really come to grips with all that we’ve experienced.  Maybe I never really will or maybe it will happen without realizing it, but I know that it does make it more difficult in the difficult times to have to deal with each stressful situation knowing I could be in a better frame of mind than I’m usually in.  I don’t tend to be very optimistic lately, I’m tired most of the time, and I wish we didn’t deserve a punch card or a preferred parking spot at the pediatrician’s office.  

I have two amazing daughters.  My family is what keeps me going.  I do it for them because they deserve it, and more.  But it’s not easy, and I wish we could do more than just survive week to week.  I want them to be able to be kids at some point and if I believe what everyone tells us, someday, it will get better.   

Wednesday, April 8, 2015

The trials and tribulations of raising Miss Tera...

There are so many things that I have wanted to post about in the past few weeks, including World Down Syndrome Day that has now come and gone, but I just don’t have the down time I once had.

One of the things that has bothered me the most, caused a lot of heartache and frustration, and is the hardest to resolve, is Tera’s behavior struggles.  Anyone who has met her can attest to her sweetness, and also to her inability to stop moving.  And while she is still incredibly sweet (most of the time), she has consistently struggled with sensory issues that have plagued both her and us.  When she was younger, we exhaustively joked about her nonstop movement.  As she has gotten older though, it has turned into more of an issue, and not just with her behavior, but with her safety and the safety of kids around her as well.  

I absolutely don’t want to prevent her from playing with other kids, but when she is around them, Tom and/or I have to constantly hover; bringing a new meaning to the term helicopter parents.  In the physical sense, we absolutely are because we never know when something will trigger her to hit or push another kid.  The truly confusing part about this particular behavior, is that it is almost impossible to predict and it rarely seems malicious.  I sometimes dread the times we know she will be around other kids because it’s completely exhausting physically and mentally to worry about what she will do.  I’m also terrified that at some point very soon, if not already, there are kids that won’t want to be around her because she may have hurt them before.  And just the thought of that shatters my heart.  

We have tried so many things and some work, although inconsistently, and the situations vary so much from place to place that it’s very difficult to pinpoint what might work and what might not.  Or as I said before, what might cause the behavior.  

Every night Tom and I anxiously check her backpack to see how her day went.  When it was a good day, we are elated! We show her the chart and make sure to give high-fives and praise her for such a great job.  But when it’s not so good, I just get disheartened all over again.  My heart breaks for her because I know many of the things she struggles with are a product of other factors.  Restless sleep, sensory issues, communication challenges, and constantly having to work so hard for everything she does.  Her stubborn streak was going to run wild no matter how many chromosomes she was born with, but the fact that that extra one is there doesn’t help.  

In the matter of the restless sleep, we at least have a plan. We are planning to have her tonsils (which are enormous) and adenoids removed in June.  She suffers from sleep apnea and we believe this is at least in part to blame for the lack of restful sleep she gets.  There are numerous studies that show links between sleep apnea and behavior issues.  While at first it may not seem a likely connection, when you think about a child never getting solid sleep, it’s not surprising that it can result in lack of attention and other behavior related issues.  In my heart I just keep hoping that the surgery will result in a whole new Tera.  One who is sick less or at least less severely, one whose attention span lengthens, and whose behavior issues significantly decrease.  That is my dream, we’ll see what actually happens.  But that isn’t until June, we still need to survive the rest of the school year.  

She has so many adults around her who are doing so much to help her be successful, but no one seems to have found the magic key to getting through to her completely.  After meeting with the director of her daycare two weeks ago and brainstorming for a while, we all came to the conclusion the enlisting the help of a behavior specialist is our next move.

The advantage to Tera having had so many teachers and therapists, is that they are an endless supply of contacts and resources.  So after reaching out to many of them, we got a few suggestions and one solid lead that we will be setting up shortly.  Right now the plan is for her to go observe Tera three times at daycare and once at preschool and then we’ll talk about a plan after that.  

It feels good to know that we have something moving, but I still hate that we have to take this step.  She truly is a great kid, and I just want everyone to be able to see that.  And it would be really great if at some point in the next five years Tom and I didn’t have to follow her around anytime we’re outside of the house...

It's hard to believe looking at a picture like this that this face could ever incite anger, but she has pushed the levels of all the patience her father and I have ever been able to muster.

Thursday, March 12, 2015

A little something "extra" in common...

The first time Tera was “spotted” she was about five months old.  We were at the Lake County Fair with friends and taking a break from the heat when a woman approached Tom and I and asked if Tera had Down Syndrome.  We were both so taken by surprise I didn’t even really know if I had heard her correctly, but I think I answered yes and as she continued on her way I realized her daughter also had DS.  At the time, I didn’t know how anybody could really tell because to me, it wasn’t that obvious.  I wasn’t offended (I mean, she does have it), but no one had ever approached us before and said anything about it.  For months after that, I thought about how I as a parent, would feel about approaching other parents of kids with DS without knowing 100% that they had it.  I wondered how anyone could feel sure enough to say something to another parent.  I mean, what if they were wrong? I wondered for a long time if people could easily tell that Tera had it; I still do.  But as I look back on those early pictures, the ones I thought for a long time didn’t show anything, I wonder how I didn’t see it then.  I used to look at those very first pictures of her, in the hospital blankets, having just been born, and search for signs of DS.  Now I look at them and think it should have been so obvious.  
At the time, all I could see was our beautiful new daughter.  So innocent and new, and with so many surprises.  We didn’t know in those first pictures what we were about to find out, we didn’t know she had three holes in heart, or a thyroid condition, or the beginning signs of a strep infection, or that before even spending one whole night together as a family that she would be whisked away and the next time we saw her she would have an IV, oxygen, and a feeding tube in.  But then she also surprised us when she pulled the feeding tube out on her own after four days and started taking a bottle.  She surprised us by rolling over for the first time when she was two weeks old (even though she wasn’t supposed to be doing it because she was using the wrong muscles).  She surprised us by walking earlier than we were told to expect for a child with DS.  And she has surprised us so many more times with all her amazing accomplishments.

A few weekends ago we were at the mall when the parents of a woman with DS waved to and acknowledged Tera.  Tom nudged me and pointed them out and and let me know that their daughter also appeared to have DS.  They waved again and then came up to us and started a conversation.  They started the conversation by telling us how adorable Tera is (not going to disagree there) and then introduced us to their daughter Lindsay.  Lindsay is 26 and lives in a home with five other adults in Skokie.  She works at a daycare, has a boyfriend, took classes at CLC and was such a pleasure to talk to.  We talked to her parents about various health concerns, knew some of the same doctors, and discussed how different it was for them 26 years ago to have a child with DS as compared to now.  At the time of Lindsay’s birth, they considered themselves so lucky to have had her at a time when there was so much more information and they couldn’t imagine going through that 20 years earlier.  Meanwhile we were thinking about how lucky we are that there is so much more information and so many more resources and opportunities for individuals with DS than there were over 20 years ago when Lindsay was born.  

Lindsay is a very independent young woman and seems to have a truly amazing relationship with her parents.  It was very obvious how much love existed between them and while her parents openly admitted how difficult parts of their lives had been at times, you could see how truly lucky they felt to be Lindsay’s parents.  

I don’t need to be reassured that Tera will grow up to be amazing.  I have no doubt that she will continue to overcome and achieve.  I know how lucky we are as a family to have the resources available to us that we do.  I look at pictures of Tera from a year or two ago and think, “she was so much easier back then”.  But I know that’s not what I was thinking at the time.  I know that for all of our struggles right now, there will be a time (I’m really quite sure about this) when I’ll look back on today and think, “it wasn’t that bad”.  And while I don’t know that there will ever be a time when I think things are easy, I’m trying to be confident that they will at least be a little easier.  

So to Lindsay, you more than likely won’t read this, but thank you for being such an enjoyable person to talk to.  Your parents readily admitted your stubborn streak is still quite present so I know you are more than capable of still making your mom and dad a little crazy sometimes, but your smile made my day.  

Thursday, February 26, 2015

Happy 4th Birthday Tera!!

I can’t even believe I’m writing about the fact that Tera is four.  When she turned one, it was emotional since her first year was so full of unexpected experiences.  Turning two and three were emotional, but not as bad as one.  And now four.  For some reason it just seems so old.  One of my favorite pictures of Tera (there are many) is a professional one from daycare when she was two.  They captured all that is Tera and her little face has the sweetest expression and her eyes are just full of life.  I can’t bring myself to change that picture on my desk at work or in the frame at home because she is so amazingly beautiful in it.  But it also reminds me how little she looks in it and how much she has changed since then.  

Aging children is an emotion I would imagine most parents, maybe more so moms, experience.  It’s a confusing time of trying to appreciate all that they can do as they get older and at the same time trying to hold on to the innocence and dependence of being a baby or toddler.  With Tera we pretty much knew we were going to have another one so even though it was hard at times to come to grips that my first baby was getting bigger and older, I was pretty sure I would get to experience that time again.  Now with Zoey, I find myself struggling with it so much more.

Despite the fact that Tera is still so little, I look at her chubby little hands next to Zoey’s tiny ones and realize how much bigger she is than her baby sister.  I watch her perform simple tasks and motions that at one point she struggled so much with and find it hard to believe there was ever a time when she couldn't do it.  I wondered for so long how old she would be when she would finally start saying funny things and now that she does, it’s hard to remember how anxious I was to hear that first word.  

Tera’s birthday, and I imagine Zoey’s will be too, is a day of mixed emotions.  On the one hand we were finally able to meet our first child.  Despite an easy pregnancy with her, I didn’t particularly enjoy being pregnant and so the end came with a definite wave of relief to be done.  She was an easy, short delivery and before I knew it, I was holding that tiny little stranger in my arms still in disbelief that she was really ours.  But then amidst the excitement and exhaustion of our first hour of parenthood, came the news we had no preparation for.  In one sentence our lives changed forever.  Fear and sadness temporarily pushed aside our happiness.  We didn’t just have a new baby, we had a new diagnosis.  Our tiny little girl was different and would always be different.  

When we shared the news with our family that day, we only shared part of our news while we tried to accept and come to grips the situation.  I felt like a liar as I told people that she was healthy because I didn’t think that was entirely true.  We cried.  A lot.  We were scared and worried and at same time, still very excited and in love with this new little girl.  

Four years later, I can honestly say, that while it’s still a little scary, it’s not nearly as scary as it was that first day.  She has touched so many people and has most definitely changed our lives.  She is not an easy child, but her defiance, fire, tenacity, independence, and strong will are what make her so incredible (and many times are the traits that drive us the most crazy).  

There are still a lot of times I cry.  Not necessarily just because she has Down Syndrome, but because of some of the things it entails.  As I lay my hand on her chest when I’m trying to get her back to sleep at night, I feel the whooshing of the blood through the hole in her heart instead of a steady beat.  I listen to her snore as she breathes through her mouth because her passages are so small and her tonsils are so big.  We worry more about pneumonia, ear infections, sinus infections, digestive issues, and skin problems that are common to kids with DS.  She has orthotics that prevent her from wearing cute shoes and will probably never be even close to as tall as either of her above average height parents.  Her larger than average tongue and low tone make speech more difficult.  

But...she is known everywhere she goes.  The doctors and nurses fawn over her, she delights all her therapists with her energy and accomplishments, she inspires people all around her, her picture brightens the day of people she’s never met, she has an infectious smile, a willingness to do things that are difficult for her, and continues to amaze Tom and I daily (she also challenges us daily but that’s for another post…).  

So what does Tera love right now? She adores her baby sister.  I mean, truly loves her.  She loves her baby dolls, her kitchen, coloring and painting, jumping on her trampoline, reading, puzzles, her new dollhouse, dancing, tea parties, her Star Wars guys, Batman, dress up, and tools.  Her favorite things to watch are: Doc McStuffins, Sofia the First, Phineas and Ferb, How to Train Your Dragon 1 and 2, Gnomeo and Juliet, Monsters Inc, Despicable Me, Little Mermaid, and Lion King.  She still struggles with her colors, but I’m pretty sure I’ve convinced her to love purple.  She loves peanut butter and jelly, meatballs, pasta, waffles, eggs, avocado, cupcakes, popcorn, blueberry greek yogurt, and bananas.  She’s currently in hippotherapy and loves her pony Chance, she does private speech and OT once a week, and is in the literacy program at Gigi’s on Saturday mornings.  And she loves life.  Tera does everything with more energy than I can muster in a whole day.  She loves fiercely, hates when people are upset or hurting, and despite the fact that she challenges every ounce of patience I have on an almost daily basis, I simply cannot imagine my life without that little hellion.

So to you my sweet Tera, on the fourth anniversary of your birth and also of us becoming parents, I want you to know how much we love you.  You make me proud to be your mom and inspire me to be a better person.  I look at the world differently as your mom and it is a better place.  

Tuesday, February 17, 2015

I'm afraid to think about what will happen next...

I don’t really know where to start in describing how we’re dealing with all the sickness that has taken a hold of our household these past few weeks.  I don’t want to recant every single detail, but let’s just say three of us have had strep and the flu, Zoey had (has) a virus that has been going on for three weeks, Tera had an asthma attack and stomach virus, I got strep again, Tera got an ear infection, three of us had pink eye, and we think Zoey may have another virus.  I have most definitely lost count of all the prescriptions we’ve filled, but suffice it to say, if we weren’t already pretty close to our pharmacists before, we might be invited to Thanksgiving dinner next year.  The doctor’s office and all the staff must either think we’re hypochondriacs or carriers of the plague.  We’ve had to cancel more appointments and get togethers than I can ever remember.  

Tom and I now leave the house with a feeling of dread about what we can only assume to be an impending phone call telling us one, or both, of the kids is sick.  I leave work each day with things that need to get done, even if I have no intention of it getting done that night, just in case I have to miss work again (although it usually isn’t a situation that allows me to get work done anyway so I don’t know why I do it).  I make sure every afternoon that I leave that my materials are ready to go for the next day so that sub plans are more easily assembled and so that if I end up running really behind because we have too many medications to administer, at least everything is ready to go when I finally do make it work.  

I’m not sure what the lifespan is on a nebulizer, but I’m waiting for the motor to start smoking any day now from having to do multiple treatments on multiple children multiple times a day.  My mom has become too afraid to ask how everyone is doing although she credited me last week for at least being able to retain my sense of humor through it all.  I told her I either have to laugh or cry (I’ve done both).  

I’m so completely exhausted when I get home because all I do is play catch up at work, I’m constantly trying to get better myself, and the energy it takes to keep track of everything we need to do to keep these two kids from getting sicker is oftentimes quite overwhelming.  Multiple antibiotics a day, vitamins, probiotics, regular medications, who’s getting which nebulizer treatment which day (or doing them back to back), emptying and refilling humidifiers, saline spray, suctioning, and eye drops.  And that’s on top of the normal things we need to do, you know, like feed and bathe them (and ourselves).  And this all takes place between the hours of 5 and 6am and/or 5 and 9pm.  Sleep patterns for both of them have been disrupted which has resulted in all of us getting less sleep at night.  The kids at least get to take naps, Tom and I just drink more coffee.  

This has pretty consistently been a bad time of the year for Tera.  She didn’t start out problem free, her first birthday brought her first case of pneumonia, her second February was filled with sickness, her third February, while more minor than previous years still had its share of issues, and this one hasn’t started out so well either.  I had a feeling all along when she had her longest streak ever of being healthy that it was going to end with a bang, and while it wasn’t pneumonia that ended it, it was strep AND the flu.

And through it all, these two girls are such troopers.  Taking all the medication, sitting through nebulizing treatments, and in general just feeling sick all the time.  And then they both still have all the normal kid stuff to do like learning new things, trying to behave, and they both have therapy sessions.  

This was a super stressful time for us when there was just one of them, but now that there are two of them? And that they both have their own health issues to contend with doesn’t make anything any easier. Each day seems to bring it’s own new complication; a runny nose that wasn’t runny the day before, an increase in the frequency of a cough, a goopy eye, or a general lack of improvement overall for either of them.   

And in the midst of this craziness somehow Zoey turned seven months old and Tera will be four in a week and a half.  My girls are growing faster than I can keep up with and while I’m trying “enjoy these times”, we spend half our time together as a family at the doctor or administering medicine.   But it makes me want to squeeze them even more to know that at least we have this time together.  No matter how miserable any of us may be at any given time, we are so lucky to have them; boogers, coughs, and all….

The doctor has no idea how she hasn't been
more miserable and uncomfortable as a result
of her infection.  This is just one reason why
she's so amazing.  
**Update: since finishing this Zoey has been diagnosed with a bad double ear infection accompanied by a sinus infection that has left her coughing pretty much all day.  I’m looking forward to a great night of little sleep while I listen to my little one’s discomfort.  Why does being a parent have to hurt your heart so much?

Wednesday, January 28, 2015

All I'm saying is it kinda sucks...

I know why parents of kids with special needs tend to dread IEP meetings.  Today wasn't our first one.  We sat down with a similar group of people last year around this time to write her IEP goals and before that she had yearly evaluations in Early Intervention those went pretty much the same.

Here’s why IEP meetings tend to suck.  As a parent, one of the hardest things to hear, besides bad news about their physical health, is that they aren’t performing at the same level as their peers; typical or otherwise.  

This morning was Tera’s first annual IEP review meeting.  She has almost completed one year (minus the summer) of Early Childhood.  On the plus side, Tera has an amazing team of people that work with her and that we are in pretty regular contact with.  In this past year, we feel that Tera has made some pretty great strides in her vocabulary and also with her fine motor skills and gross motor skills.  She really only has one PT goal at this point and that is to be able to navigate stairs, curbs, and other steps without assistance.  She can do it, but as her PT pointed out, much of her struggle is due to her short stature and her inability to get her legs up as high as she might need to.  But anyone who has seen Tera move knows there isn’t much that slows her down.  

She met her OT goal of being able to draw horizontal and vertical lines and also circles.  She holds a writing utensil the correct way most of the time, and can write the “T” and “E” in her name.  Next up will be diagonal lines, letters with curves in them, and being able to complete three step skills (cut, glue, stick) with minimal cues and also while keeping her hands to herself.  They will also work on getting her to write the first letter of her last name after her first name, which works out well since she is a master of the letter “T”.

Then there are the other goals.  We received a copy of her goals for this past year in her backpack yesterday.  As a result of our every evening activity and also with Zoey being sick, I didn’t look it over until this morning before our meeting.  I’m glad I didn’t.  At the bottom of more pages than I expected, were the words, “goal not met”.  I won’t lie, that stung a little.  I didn’t think she was necessarily going to blow through all of her goals with no setbacks (although it would have been a pleasant surprise), but I didn’t expect that painful phrase to appear as many times as it did.  She is still struggling with consistently counting from 1-5 and higher than 5.  She’s also inconsistent in her ability to name colors and shapes.  

There are several other goals; some she met some she didn’t.  But the part that I really wasn’t expecting, and that was the hardest to hear, is that she showed regression in some areas and therefore qualifies for their summer school program.  We don’t have to do it, but at this point I’m not sure why we wouldn’t if she needs it.  So that means, to the best of my understanding right now, that it would be for five weeks, four hours a day and it would be either in Vernon Hills or Gages Lake.  Which also means she would probably be bussed.  Okay, so there’s something else I have to come to grips with.

They did do a great job explaining all of her strengths and I can tell that even with her behavior struggles, everyone that works with her is able to see what a true joy she can be.

Now mind you, we also decided to keep Zoey home today after yet another episode of throwing up at daycare due to her congestion.  So not only am I dealing with what I think is a fairly typically emotional time of having to hear what your child still can’t do, we’re also getting over three of us having the flu and strep and wondering what the next few days, and nights, will bring with Zoey.  

And so as my day progressed after the meeting this morning, I found myself more and more despondent over the situation.  And I don’t think I have to be sorry for that.  It sucks big time to hear that your kid isn’t doing what they hoped she’d be able to do a year ago.  It sucks to know that we may face many more of these types of meetings over the years.  And I could be optimistic and say maybe from here on out she’ll start meeting more of her goals and maybe she’ll even start to catch up a little to her peers.  But right now, I’m too tired to be optimistic.  Yes she’ll do the things she isn’t doing right now eventually, but for today, it makes me sad and I think I have the right to feel that way.  

Compounding the emotions is knowing that Zoey is also demonstrating some delays in her gross motor skills and so we’ve enlisted the help of Tera’s former PT.  While it’s great that we have the connections and knowledge that we do about developmental delays in babies, I really wish I could say I was more ignorant on the topic.  I could do without worrying about the fact that Zoey is actually further behind than Tera was at this point in her ability to hold her head up while on her tummy.  Or that, while Zoey did in fact roll over in her sleep at daycare on Monday, Tera was already doing it by now.  Am I losing sleep over it? Well, I’m losing sleep over Zoey’s current health dilemmas but not really her inability to tolerate tummy time.  But it is on my mind and conscious concern.  

It was stressful and exhausting enough to constantly be thinking about and working on both Tera’s health and development.  But now with two kids? It’s why I can never stop coloring my hair; I’m too afraid of what might be underneath.  So in the midst of the worry and the stress, I still have to be a mom and deal with it.  We nebulize both kids and watch for the symptoms we know to be problematic.  We work on the strategies we can with them to help them get through the current concerns.  We talk to the professionals that work with them and let them do their job to help our kids.  I think about them day and night constantly wondering if what we’re doing is enough even though I know we do our best.  And we muddle through the chaos, the worry, the stress, and the illness until calm times come again.  However short lived they may be.  Oh yeah, and I drink wine and vodka; not usually together though...

I'm not looking for pity. I truly am not. These are the risks you take when you decide to have children. Some people get lucky and some people not so much. I still consider us very lucky; challenged but lucky. But lucky as we are, there are days when the challenges are a bit harder to handle, especially when they come all at one time. So we'll continue playing doctor, teacher, and therapist at home and see where the hell we all go from here.

Wednesday, January 14, 2015

Zoey is 6 months old!!

We’re now back in the swing of things both at home and at work.   At home we’re back into regular bedtimes, evenings full of preparing snacks, lunches, bottles, and clothes all for the next day.  Tom and I are back to our regular diet of healthy eating  and figuring out who’s going to the gym which day and who’s picking up the kids or driving to therapy or starting dinner.  Basically, our time has become a lot more valuable.  

And speaking of time...our baby girl is six months old today.  It’s a truly confusing concept to wrap my mind around.  Tom would probably tell me I’m being too sentimental, that it’s just a day, and in the grand scheme of her life, it’s not the most important anniversary.  But six months ago today, things got a whole lot crazier and we met, albeit through a plastic box, the little girl that would complete our family.  

I didn’t particularly expect to have another traumatic birth experience (although Tera’s birth was completely uncomplicated, the hour following her birth was a little rough) and I most certainly didn’t expect to be giving birth at just 28.5 weeks pregnant.  I didn’t expect that she would be critically ill in her first week, and I didn’t expect to bring home our baby nine weeks after she was born.  

I don’t embrace a lot of sayings, but we’ve come to adopt the motto: expect the unexpected, in the Theodore household.  In those early weeks, as we tried to wait patiently for Zoey to grow and learn how to do so many things that other babies are born knowing how to do, like breathe on her own and eat on her own, the idea of her at the six month mark was pretty hard to imagine.  And now, at the six month mark, it’s hard to believe all that she’s been through and all that she’s overcome.  
This is the hat Zoey was wearing the first time I held her at nine days old. I almost cried when I found it in one of her drawers because I couldn't believe that it had actually fit her at one point.  

Zoey is a fighter.   When she was about two or three days old, the neonatologist on duty came into my hospital room at about 5 am to tell Tom and I that Zoey’s left lung had collapsed for the second time.  They had had to reinsert the chest tube (leaving her with a second scar) and were able to reopen the lung.  He told us that she was resting comfortably and that our little girl was feisty, which to them was the best thing that a baby could be.  It was a word that more than one doctor used to describe her through those nine weeks.  At home, we’ve dubbed her “Feisty Pants” (if you’ve seen Frozen, you might recognize this) and it describes her perfectly.  While she is an incredibly easy baby, who has been known to sleep 20-22 hours a day (sorry to all you moms who have quite the opposite problem), when she is awake, she’s moving, talking, and kicking her little legs.  Her huge, beautiful eyes are often as wide open as they could possibly be taking in everything around her.  Her infectious smile, much like her big sister’s, lights up my whole life.  

At six months old, Zoey is 11 lbs 9 oz, which means she is almost four and a half times bigger than she was when she was born.  She is 24 inches long and it seems as though she may end up taking after her dad in her long, lean frame.  She is in mostly three month clothes, but her little legs are too long for three month one piece outfits, so in those she is swimming a little in six month ones.  

She is a very happy, smiley, sleepy girl.  She’s very vocal, looks like she may be close to rolling over from her back to her tummy, but HATES tummy time! You would think we were actually torturing her.  As a result, she makes little to no effort (at least at home, just like Tera, she sometimes likes to show off at daycare) to lift her head while lying on her tummy.  It’s as if she’s doing it out of spite to show us how much she truly despises having to be in that position.  On the plus side, she has decent neck and trunk control while we’re holding her.  Our experience as parents of a child with special needs reminds us that she will get there, but it also reminds us of the activities and interventions we may need to do to help her get there.  She’s also batting at toys above her and adores looking at and playing with her hands, which is adorable of course.  Do I sound like a proud mom? I hope so because both these girls completely and utterly amaze me with their ability to defy odds and fight for everything they do.  

Unfortunately I wish we could say that we were able to celebrate this special day a little more, but Tera decided to spend Zoey’s anniversary getting sick so we’re back on Tera sick watch.  And now I need to get some rest since we never know for sure how these nights will go.  Happy Half Birthday to my sweet little Feisty Pants!