Saturday, September 7, 2013

Guest Post: Tamara Hansen's JOY

“She will never have normal hips, but we can help her so she can do normal things.”  

Those are the words our beloved orthopedic surgeon said to us said softly to us as we talked over Joy’s bed in the recovery room after her last surgery.   It also words that I have replayed in my head over and over again since.  Right then I let the actual details of the surgery, and the previous ones, all slip away from my mind.  All the tears, heartache and fear kind of just melted into a puddle.  It wasn’t about looking over x-rays, or trying to understand the mechanics of her hips, or talking about what comes next.  His words right then summed it all up.  I found it comfort in his confidence and peace in his simple way of putting our journey in perspective.   We aren’t done.  She will never be free of this.  Yet, we will stay the course.  We will do whatever we have to do to give her “normal”.

He went a little bit further and talked about “playing sports and having babies” as examples of things he’d make sure she could do.  Wow.  What a sigh of relief, yet how terrifying too!

Of course I want her to feel capable of to running a marathon, joining the soccer team or whatever she makes her feel healthy and happy.   Having babies, that’s hard one to think about when she’s only in preschool, but sure I want her to be able to do that if she chooses also.  It isn’t about scoring the goals, being the fastest or giving me grandchildren.  It’s about her having the opportunities to do whatever brings her satisfaction.  Isn’t that all any of us really want for our children anyway, is for them to be happy? 

So, as I replay this message he gave us in my head I think about just that.  I think about how even though this has been one hard road and I hate to think about that we have more surgeries ahead,  that it will be all worth it.  It will be worth as it to know that as she grows up she may have to work harder than some, but she can do whatever  she wants to do.  That hip dysplasia is not stopping her.

Of course, I will always be her number one cheerleader, that’s my job as her mother.  On the outside looking in I am sure I will always be the loudest, most energetic and embarrassing mom on the sidelines.  Yet, on the inside I am terrified of letting her be normal.  It’s hard to admit, but it’s painful for me to watch her do some of the things other kids do.

I have not taken her back to Mommy and Me gymnastics since before her last surgeries.  Instead we play Yoga, gymnastics and dance class at home where I get to be the teacher according to my own comfort level.  When we’re out – just us, with friends or with our play-group I am constantly fighting the urge to hover over her on the playground – and those hips.  
Often the urge wins and I am spotting her as she climbs, asking if her anything hurts and holding my breath as she plays if not I am not in arm’s reach.   I hate that I am always following her, and I do try to keep a distance to give her a healthy space, but I am terrified to let her just be for long.  I have a few close friends that I trust to watch her while I nurse the baby, run to the restroom or grab something from the car but even that is hard.  It’s so hard to let go of the worry. What if she falls?  Will they see if she is wobbly and help her up?  What if one of her legs gets stuck or pulled?  What if she tries to do something her hips aren’t strong enough to do?  What if another kid grabs her by the legs?  What if she doesn’t tell me if something hurts?  What if whomever is watching her doesn’t  know her history?  What if they don’t understand?  What if they think I am just one of those “helicopter parents”? 

My mother always told me “what ifs” will make you crazy.  Okay, so I am crazy.   I  I don’t want to be like this.  It’s not healthy for any of us.  It’s hard though.  One of the hardest things I’ve ever to do.  Some days are worse than others, some playgrounds scare me more than others, the dynamic of some kids play concerns me more.  Sometimes I feel  more trusting, more secure and more brave that she will be okay.  That she knows her own limitations.  Then other times, if she is following someone around, I am terrified that she is going to try do what they are doing - but they don’t have hip dysplasia!  I am really working on this.  It’s a huge struggle for me right now. 

Especially that she just started preschool a few weeks ago.  We are doing a co-op so I work there once a week and she has a drop-off day once a week.  We have yet to do the drop-off.  I have written on her paperwork about HD, she really doesn’t have any restrictions but we don’t want her pulled by the legs.  I have talked to the teacher a little about her history and there are a couple of friends/moms there that know us well.  Yet, I am still so nervous.  I have been so tempted to tell everyone of them our story.  To please, please watch her extra carefully.  I had goose bumps when another mom stood up in front of all the parents at a meeting and asked them not treat her son who is going through his own orthopedic issues any differently.  I was in awe of her.  There was no way I do could do that. It was hard enough for me not to stand up and share our story and ask them to make sure they didn’t let anything happen to my baby girl and her precious hips.

But, I didn’t and I am not going to.  I am trying to let her just be a normal kid as much as possible.  As much as I want for her to have strong hips and be pain free, I equally want her to have a healthy amount of confidence and trust in her own abilities.  If I keep hovering over her and trying to keep her from feeling independent, than why I am putting her through her surgery after surgery?  Isn’t the whole point so she can “do normal things”? 
We have our big follow-up next week.  We have not had an appointment and x-rays since January, when she got out of her brace after 13 weeks in it full-time following her pelvic osteotomies last fall.  The bone grafts were looking great then, she started walking the same day and now running even better than before.  We do have things to talk over with our doctor, but he has assured us we deserve some successes along the way and we are on a break for a few years now.  Praying this stays the same.  Also praying for some positive news on the AVN front, that maybe some blood supply is returning to the femoral heads.  Of course I am in the midst of the week before an appointment anxiety big-time right now, so I am also replaying those words more than ever.  “….so she can do normal things”. 
Who knows, maybe she will take after me and be much more interested in getting elected for student government than trying out for the gymnastics team anyway?