Trials

I am struggling.  I need to write.  What to do though if my topic is a taboo one?  I have gone back and forth for several days struggling with wanting to write and trying to talk myself out of it.  I am giving in.  This is my stress relief and I want to write what needs to be written...what shouldn't be taboo or shameful. So, here it goes.

Before I get to the heart of the post, you need some background information.  The last three weeks have been very difficult here at the Hogan house.  We have gone back and forth with the school trying to find a good fit for Keyan's days.  It has meant hours of meetings, observation, research, tackling issues head on, and facing the realities of the widening gap educationally between Keyan and her peers.  Facing these realities are not easy but we will not let her down because of of our own feelings.  I have literally put hours and hours of work into figuring it all out.  As of a week ago, we have a plan that we have agreed to but I will still spend a lot of energy ensuring that the school is doing the best they can for her.

On top of navigating the craziness of school, Sidney was diagnosed with mono right after school started.  She has likely had it for quite some time and it is affecting her Kidneys, liver, and spleen.  She is miserable most of the time.  She has no energy, her throat hurts her very badly, she fights fevers every day, and her body is simply fatigued.  She finally made it to two hours of school three days this week.   Every parent out there knows the pain of watching your child not feeling good.  The feeling of helplessness and frustration as it continues day after day.  We have been to the doctor several times despite that it is a virus for which we can do nothing.  It will just take time, and apparently lots of it.  Her appetite has disappeared along with her immunity so she feels very crummy.  I have a lot of guilt about not catching it sooner so that it wouldn't have gotten this bad but it is what it is and we are dealing with it the best ways we know how.  These things, along with normal life things like sports, dinner, lunches, groceries, laundry, a nursing shortage here at our house, homework, some health issues for myself, parent meetings, family decisions, and many other things, have left me utterly exhausted. So, when this particular Friday morning happened, I may have already been posed for a breakdown....and it came. 

It came with a urgent "Stephanie" called from the nurse in the bathroom with Keyan.  My stomach fell with the knowledge of what she was going to say.  Keyan had started her period.  The air left my body as if I had been kicked.  The tears came along with the quick thoughts of how to handle it.  A hug from the nurse, and an "I will run to the store;" from my friend who comes on Friday mornings to  help out, was all the time I took for tears at that point. I needed to face Keyan without tears and help her decipher what in the world was going on.  Between the nurse and I we explained what was happening, cleaned her up, and helped her move on.  Yes, we had read several books on puberty and body changes.  Yes, she had seen the video at school about all of these things, and yes we had discussed it all as things happened.  It did not matter.  Nothing could prepare our 10 year old little girl for this life change.  Oh, and did I mention that we had an all important IEP at the school that morning that both Paul and I needed to attend?  The timing could not have been worse...although at least we were at home.  For that I am grateful. 

I assume it is easy to be reading this and be thinking "What is the big deal?  It is something every girl goes through."  Let me explain the big deal. While children with cerebral palsy and some other special needs do tend to face puberty at an earlier age than their peers (to which I ask how fair is that?), Keyan is in an even more unique situation.  The IV fluids that give her all of her nutrition is adding fuel to the fire.  The fats that are in the solution are soy based.  Soy is interpreted as estrogen in the body. So, her body thinks that it is being inundated with estrogen all the time.  That is the reason we are at this point.  She has very little body fat, she doesn't eat hormone laced meat or milk, there is no genetic reason to start at 10, it is the very thing that keeps her alive that leads her down this road.  She is not "becoming a woman" her body just feels that way.

This has been our experience thus far:

Products: Having her wear a pull-up would be the easiest solution an the one that would probably be the most effective.  That is fine for night time, that is what she is used to.  However, while she is cognitively delayed, she knows enough to want underwear on during the day.  Ok, pads it is...Can I just say that pads, even the new "teen" lines, are not made to fit in a size 7/8 little girls underwear.  It has been a trial trying to find something that both works and fits.  

Internet: My first stop was a google search of "developmentally disabled girls and periods," then "starting periods at a young age"....what I found was fairly minimal and even harder was that Keyan didn't fit into any one box.  She not only couldn't really understand what was happening but so much of the advise was not pertinent to her because of her medical complexities. Over shadowing at all is the largely held belief that we shouldn't talk about menstruation and we should keep it behind bathroom doors.  I needed help....and while I normally would hop on Facebook and ask if anyone knew of an OBGYN that was good with disabled children, I knew that would only lead to more questions that people didn't really want to read on social media. It is crazy that 50% of the human population deals with their period every 28 -32 days and yet on the whole, society wants to act as if it never happens.  Girls and women often suffer from severe symptoms and no one wants to talk about it yet alone when it is happening to a child.  I shut the computer feeling even more confused.

Independence:  This is probably the single hardest one for me.  We have worked SO hard over the part year to give Keyan more dignity and independence in the bathroom.  The bidet that we raised money for and purchased has changed not only her life but ours as her parents as well.  With the bidet, she is able to be almost completely independent in the bathroom.  It is awesome!  It has opened up so much for all of us.  Her diseases means that she can spend a lot of time in the bathroom and now she doesn't have us nagging her to see if she is finished. Her period took that independence right away from her...at least for that time of the month.  She is not able to care for herself while having her period.  It feel like we are right back where we came from and it makes me SO sad.  

Help: Along with a loss of independence, a period for a 10 year old developmentally disabled child also brings with it the need for education, and not just for Keyan.  It never crossed my mind until it happened that I would have to teach Paul how to deal with a period.  Dads are supposed to be on the periphial on this sort of thing.  There is no such luxury for this Dad.  He has handled it with amazing attitude and his "all in" outlook,  but I know it pains him.  You can see it in his eyes.  He gets through it by looking at it as a medical thing, but it is hard.  We also have to talk to our nurses about symptoms, management, emotions, ect.  There is nothing private about this situation. (And yes, I see the irony in that statement as I am blogging to the world about this!)  I just keep wanting to scream, "my 10 year old is having her period and there is nothing fair about it!"

Medicine: Due to Keyan's underlying disease, we can not use ibuprofen or tylenol for her.  That leaves us with narcotics and a heating pad to manage her symptoms.  She looked at me on the second day and said, "Am I going to feel like this from now on?"  She had never complained but was aware that she felt different and I do not have the basic medication to help her.  We are tracking down some other options and we see an OBGYN in a couple of weeks but it has just been one more thing that sets this apart from anything "normal."

Technology: I was determined Saturday morning to embrace this and figure out how best to handle it. I knew that I needed to keep track of all the lovely details so like I often do, I turned to technology.  Certainly there must be an app for this to make things easier.  I open up the app store, typed in a quick "period tracker" in the search bar and I was off into yet another reminder of how unnatural this was.  Every app that I opened not only charted a period but also ovulation, fertility, had a place to make down "intimate moments", and a place to write up information about your "partner."  What??? I decided to stop the search for the time being and get into the shower.  

As the water poured down around me, so did my tears.  I sobbed like I haven't in a long time.  As I fell to my knees in the shower, I sat there wondering what was wrong with me?  Why could I not control my emotions and just deal with this matter of factly? And then it hit me and hit me hard.  I felt not only sad, and angry but so so alone. LONELINESS  was my prevailing thought.  Where do you turn when your child doesn't fit in any box, is outside of both the normal and the abnormal? Forging the trail is difficult and lonely. Piecing together a plan is a lot of work.  Everywhere I turned, I was reminded of the extreme of our situation.  I turned to friends with older daughters and they were able to help and make suggestions.  I turned to friends with disabled daughters who also gave me some ideas and understood my whole "this sucks" attitude.  I turned to Paul, because I was still seeking someone who could understand and that is when I gave in to the fact that this was up to us.  No one was going to be able to guide us through Keyan starting her period.  And so, through tears that have continued to come, we are figuring things out.  We have some new ideas, some appointments, and some some thoughts that we will continue to sort out and work towards a better understanding of how to help our girl.  There are no cut and dry answers. It is a process....a painful, lonely process, but one that we are continuing on because it is what you do as a parent to such a special kid!