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.