Sleepy Samantha - a parent perspective

As I reflect upon the last year, I realize that Samantha's condition of Growth Hormone Deficiency has become both "normalized" in her life and at the same time affects her life daily in ways I do and do not fully understand.

Samantha has needed more sleep over the last few months than ever before.  I think it is due to her body working incredibly hard to grow and is worn out by the end of the afternoon.  By 5-6pm Samantha has little energy left and that is the same time when she finishes her homework after soccer practices and games which are 4x per week during soccer season.  When studying for finals just 2 weeks ago, I found Samantha on many nights asleep in bed with her computer on her lap well before her usual bedtime. It is not uncommon for children 12-13 years old to go to bed at 9 or even 10pm.  From the time she arrives home at 6-7pm to the time she goes to bed is spent studying or completing homework assignments.  Generally she is in bed by 9pm; however the ideal time would be an hour prior. What 12/13 year old goes to bed at 8pm?  Samantha (when she can.)

How do you choose between studying for exams and going to sleep because your body cannot sustain another moment of being awake?  By the time finals came around I decided that it was more important for Samantha to sleep than to continue studying with a brain which had little brain-power left.  Her bones and brain will thank me later for allowing her to receive now the sleep she desperately needs. Samantha grows when she sleeps; we all do. Samantha's body is working harder than the average teen to hopefully achieve the same result of what her natural physical height would be if her pituitary glad was functioning properly.

This past semester of 7th grade my heart sank when Samantha came home on a few occasions stating "I fell asleep on the bus ride home."  For Samantha, this was normal.  Her body was tired; she fell asleep. When asked how she knew to get off the bus at her stop she would tell me that her friends kept an eye on her and would wake her up if she dozed off for a few minutes on the ride home.

Middle school is a time where being "part of the group" is something teens seek to attain.  Although Samantha certainly wants to be accepted and liked just as anyone else would, she isn't afraid to be herself even if that happens to be different from her peers.  Samantha is a loving and incredibly caring and devoted person to her family and friends. Contrary to what I had expected, Samantha's friends don't make insensitive comments about her treatment - her close friends know all about it and that this is her reality.  What is incredibly heart-warming is that her friends don't say a negative word to her about her condition.  She is just like any other kid who happens to take daily injections of medication to treat a condition from which only 1 in 3,800 children suffer from in the United States. How wonderful.

As her mother I am saddened that Samantha needs to take medication which can only be administered by injection.  It hurts to be pricked by a needle every single night to self-inject medication into her body for a year and a half (and counting.)  Do we really know every single very rare side effect of the medication and the consequences which would follow? No. What we do know is that the medication has been studied and used for decades and that countless children and teens have greatly benefited from it if they are candidates without negative long-term side effects.

I am simultaneously incredibly thankful and appreciative that her father and I can provide Samantha with the gift of growth which would otherwise not be an option for her had we not been determined to offer her every opportunity to become the height she would be but-for having growth hormone deficiency.

We all suffer from challenges in our lives.  Those who prevail are ones who utilize them as opportunities for understanding more about themselves and learning how to grow from these experiences. Samantha sees her cup as half-full; never half-empty.

Samantha, I love you and admire you.  Keep up the amazing work you are doing to raise awareness about Growth Hormone Deficiency and celebrating the differences in others!

Social Media

Hey guys,

Now I have finally gotten Instagram! I have written maybe 3 or 4 posts of me wanting to have Instagram and my mom not letting me sign up for it. About 2 months ago I convinced my mom I was responsible to have a social media account. 

I make sure that I only accept friend requests from people I know from school or from family and friends. If I don't know them I do not allow them to follow me.   My mom and I look through my account together and I show her the photos I post. I am glad that my mom and I look at my account and talk about the good and bad things about social media.

Funny story: my mom's friend has an Instagram account and he requested to follow me.  Since I did not recognize his screen name I declined the invitation.  When I got home my mom told me he wanted to follow me and I  told her that I did not recognize his name so I declined. My mom said, "good job" because I it is always better to be safe so that you do not allow people to follow you who you don't know. Now that I know the person is my mom's friend, I accepted his friend request.

Instagram is a fun way to follow your friends and see what they are doing, but it doesn't take the place of hanging out and spending time with one another.  Remember: limit your screen-time! :-)

It's Hanukkah Time!

I am a young Jewish girl and I celebrate Hanukkah.  At Hanukkah, families gather together for an eight-day celebration to commemorate the re-dedication of the Second Temple of Jerusalem.  Although it is not the most important Jewish holiday, it is one of the most well-known ones because of the traditional fried foods, games and our Menorah.

So far there have been 3 nights of Hanukkah.  On the first night I received a Six-Flags Magic Mountain yearly pass and on the second night my mom gave me a really cozy robe.  Tonight I got a "Bare Minerals Wish List" eye-shadow palette which is something I really wanted!

Hanukkah means a lot to me.  I know I am too mature to just think about only the presents on Hanukkah.  I think that Hanukkah is a celebration of freedom.  This holiday means I am a free Jewish girl.  The word Hanukkah means dedication.  I am dedicated to staying free.

I am very proud to be Jewish.  Even though I go to a Catholic school, I still love my religion and make it meaningful in my life.  I sing at my temple all the time, I go to all Shabbat services and Jewish youth group activities. All I know and feel is that I am proud to be a Jew and that is all I care about.

Happy Holidays to You All!

-Seriously Samantha

My Life is the Best it Could Be

On Sunday it will be 365 days of me taking Growth Hormone Therapy. I feel like I have changed so much in the last year and changed other people's lives as well. I have showed people who I truly am from the very beginning of taking Growth Hormone Therapy; and now, a year later, I see myself as a whole different person.

I have to say it has been such a long journey for me and my family. I have not gotten this far without my friends and family. The main person I would like to thank is my endocrinologist, Dr. Lavin. My mom has become more brave because she is always there to support me while I take my shots, and when I don't feel like doing it myself she gives them to me.  She was scared in the beginning and now she does it so easily. My dad has also been a big part of my journey this year by taking me to my blood tests and my bone age x-rays. The best of all has been my brother.  When I take my shots he says nothing except "WOW", which I love.

I feel really lucky to have such great support.

New Supplies For School

Hey guys,

I am so sorry I have not been blogging in so long so from now on I am going to be posting every day. Well, I am going to do my best to post every day - I might miss a day now and then.

Before I go back to school I want a couple of things: I want a really cute backpack, an iPhone case, cute folders and binders, nice pens and pencils, really cute pencil cases, a new uniform and shoes. In order to be able to get the things I want I have to: work on improving my math every day, study 10 minutes of Hebrew for my Bat-Mitzvah in January, write a blog, and read 10 pages of my summer book reading. I think I will get all the things I want and need, but first I have to do what I promised to do and get moving!

I am just a regular, ordinary kid like you and I will show you this summer how much we have in common.

Check back with me on my blog so you can see photos of me at my one year anniversary of growth hormone therapy on July 3, 2016!

Purple Needles?!?!

Last week my mom ordered new needles for my medication. They're purple, they're short, and they hurt.

My mom told the lady on the phone when she ordered my medication to make sure that the needles she sent were very small so they wouldn't hurt me as much as the ones I had. I thought that was very sweet of her, but it turned out that these needles hurt more than the bigger ones!

Next week my mom will be ordering more medication for me with a new box of needles. She promised to order the bigger needles - I know it sounds strange, but it's true. The longer ones don't hurt as much as the shorter and thinner ones.

Moms and Dads: If you have kids with Growth Hormone Deficiency, don't order the smaller and shorter needles even if they are purple. The only thing I like about them is their color, and that is just not good enough of a reason to use them.

New Hair Cut

"Dear dumb diary"...
Ha ha ha... it's me, Samantha!

Today I got a haircut. OMG my hair is so much shorter now. It used to be really long, but I love brushing my hair much more now that it is shorter.  

The guy who cuts my hair said my hair was so beautiful, and then he cut 5 inches off - that's crazy! I mean, I saw all of my hair by the end of a haircut on the floor, and trust me, it was long enough to make a really long beard.

I had a photo shoot a couple months ago and we just were sent my pictures. I can't wait to write a blog this weekend showing you what I look like. I really hope you guys like it. Bye!