For the last few years, Genzyme (the company that makes Cerezyme) has had a team run in the Boston Marathon.   Each runner pairs up with a Genzyme patient to help raise awareness for rare diseases.   Hannah was matched with Mandy in 2010 and Kristin in 2011.

When I got the call last week that Hannah was chosen to be matched with a runner this year, I was overwhelmed.  It means so much to me that even though she has been gone for more than a year that her impact in the world of Gaucher’s Disease is still just as strong.

Lisa V, we will be cheering you and your flower skirt on (and we can’t wait for pictures!).

These past few weeks have been really hard.

When Addy passed away a few weeks ago, it brought back so many memories, feelings. She was one of Hannah’s two soul sisters, families I met around the same time Hannah was diagnosed, all around the same age.  Olivia passed 3 months to the day after Hannah did.  Addy held on for over a year.  She was 4 years old. It put me in a funk.

Rare disease advocacy is front and center in my life now.   Not only with our growing Little Miss Hannah Foundation, but also working for a very prominent rare disease awareness organization.   It has been very exciting but also very stressful with World Rare Disease day coming up for both organizations.

Then I found out Sunday that we lost Katie, a beautiful little girl diagnosed with Gaucher’s type 2.  I knew she wasn’t doing well, but she was only 9 months old.   When I got the news, I was stunned.   Completely shell-shocked and heartbroken.   I just didn’t expect to lose her so young.

Then last night, I had my first nightmare in at least a few months.   Woke up at 2:00 am, panicked.   I couldn’t even stay in bed so I went to my desk and just started working so I could try and get it off my mind.  Forced myself to go to sleep almost 2 hours later.

It was so vivid, so real.   It was like reliving Hannah’s death again, but it just seemed so much more desperate.   It brought back all those feelings of failure, that I couldn’t save her.    That I didn’t do enough for her.  That I wasn’t enough for her, that she deserved more.

Here I am again, trying to get ready to go to sleep.   But I don’t want to because I’m afraid of another nightmare, afraid to lose Hannah all over again and relive that intense pain I felt last night.

I saw this post from another mom who lost her young daughter to Tay-Sachs disease, a disease in the same family as Gaucher’s Disease.  I share it because she puts into words exactly how I feel…

Is it worse to hear the words, “your daughter has Tay-Sachs disease” or “I’m afraid your daughter is not going to make it?” 

Is it worse to hear that her life expectancy is 1 to 4 years, or that she has only minutes or hours to live? 

Is it worse to see the doctor excuse himself from the room just after telling you her diagnosis because he can’t contain his tears, or to have doctors who have treated your child for years pay their respects teary-eyed?

Is it worse to have all of your hopes and dreams for your child instantly crushed or for you to know that you will never again get to hold her or take her for another stroller ride?

Is it worse to look at her smiling face, knowing that one day soon her contagious giggle, among so many other things, will be stolen from her, or to look at her gorgeous face for the very last time?

Is it worse to feel your daughter sink into your arms because she doesn’t have the physical strength or muscle tone to hold her body up, or to feel her lifeless body sink into your arms minutes afer she takes her last breath?

Is it worse to be bombarded by words like seizures, blindness, pulmonologist, feeding tube, and test studies; or words like funeral, cemetary, death certificate, and morgue?

Is your silent, speechless drive home after your child’s diagnosis worse than the silent drive home from the hospital after she died – not even hearing her noisy breathing?

Is it worse to have to muster up the energy to play with your 3 year old son and pretend that everything is fine when you return from your diagnosis appointment, or to have to tell your 9 and 3 year old sons that their sister died –to watch one literally crumble heartbroken in front of you and the other run away with his hands over his ears?

Is it worse to have to make phone calls to tell your family and friends that your daughter has a fatal disease or to tell them that your daughter died that morning?

Is it worse to walk around heartbroken in a surreal daze with red swollen eyes, trying to care for your children, or to walk around heartbroken in the same surreal daze with one less child to care for?

Is the fearful anticipation of how you will survive the next few years of continual medical treatments and interventions, symptom management, and watching your child lose almost all of their abilities worse than figuring out how you will survive the next days, months and years without ever seeing, touching, kissing, holding or caring for your child again?

The truth is, neither day is ‘worse’ or ‘easier.’ They are both completely devastating and utterly heartbreaking in their own way. They are both days that I wish I could just erase from the calendar and permanently remove from my mind.

Like Emma’s mom, I try to focus on the time in between the time of her diagnosis (5 months old) to the mom she passed away (3 years 4 months 10 days).    The times we cuddled, the times she stared into my eyes and melted my heart with her amazing smile, the times she held my fingers.

I try to focus on all the little triumphs – that time in hydrotherapy when she actually kicked her legs for the first time and loving the feel, look, and sound of the splash when she did it.  Or that time at home when she was able to knock down all the doors on her toy after trying for many, many months.  Or the time she finally put a block into a box!  Just thinking about those moments make me smile so big.

But it is still so hard.   So damn hard.   It has been almost 14 months since she has been gone.  Yet in many ways, it still feels as raw as the day she passed away.

Hannah, my little miss Hannah, I miss you so much.

I am very proud to support the new GT23 Foundation, an organization dedicated to make a REAL difference in the lives of Gaucher’s Disease Type 2/3 children. The focus is going to be working with innovative researchers to find a treatment for our Type 2/3 children, not necessarily a cure.

As my type 1 friends know, a quality treatment can provide a great quality of life. That is what we want for our Type 2/3 babies and children – more smiles, more hugs, and to have them enjoy more of their lives.

Whether you are type 1 or a parent of a type 2/3 child, we need our entire Gaucher community’s support. Personally, I have had such tremendous support from many of you with type 1 or kids with type 1. The information and love has been a godsend to me during my journey fighting for Hannah.

Please go to the foundation page, “like” it, and “share” it with others, especially those in the Gaucher community, regardless of what type of Gaucher. The hope is to be able to do for Gaucher type 2/3 what the wonderful National Gaucher Foundation has been able to do for type 1.

http://www.facebook.com/GT23Foundation

A dear friend sent this to me tonight, and so much of it rang so true for me.

Things Grieving Parents Wish You Would Remember…

1. I wish you would not be afraid to mention my child. The truth is just because you never saw my child doesn’t mean he or she doesn’t deserve your recognition.

2. I wish that if we did talk about my child and I cried you didn’t think it was because you have hurt me by mentioning my child. The truth is I need to cry and …talk about my baby with you. Crying and emotional outbursts help me heal.

3. I wish that you could talk about my child more than once. The truth is if you do, it reassures me that you haven’t forgotten and that you do care and understand.

4. I wish you wouldn’t think that I don’t want to talk about my child. The truth is I love my child and need to talk about him or her.

5. I wish you could tell me you are sorry my child has died and that you are thinking of me. The truth is that it tells me you care.

6. I wish you wouldn’t think what has happened is one big bad memory for me. The truth is the memory of my child, the love I feel for my baby, the dreams I had and the memories I have created for my child are all loving memories. Yes there are bad memories too but please understand that it’s not all like that.

7. I wish you wouldn’t pretend that my child never existed.

8. I wish you wouldn’t judge me because I am not acting the way you think I should be. The truth is grief is a very personal thing and we are all different people who deal with things differently.

9. I wish you wouldn’t think if I have a good day I’m “over it” or if I have a bad day I am being unreasonable because you think I should be over it. The truth is there is no “normal” way for me to act.

10. I wish you wouldn’t stay away from me. The truth is loosing my child doesn’t mean I’m contagious. By staying away you make me feel isolated, confused and like it is my fault.

11. I wish you wouldn’t expect my grief to be “over and done with” in a few weeks, months, or years for that matter. The truth is it may get easier with time but I will never be “over” this.

12. My babies due date, Mothers Day, celebration times, the day my baby died and the day I lost my baby are all important and sad days for me. The truth is I wish you could tell me by words or by letter you are thinking of me on these days.

13. I wish you understood that losing my child has changed me. The truth is I am not the same person I was before and will never be that person again. If you keep waiting for me to get back to “”normal” you will stay frustrated. I am a new person with new thoughts, dreams, beliefs, and values. Please try to get to know the real me-maybe you’ll still like me.

14. I wish you wouldn’t tell me I could have another baby. The truth is I want the baby I lost and no other baby can replace this baby. Babies aren’t interchangeable. Besides, you do not know whether we have fertility problems too.

15. I wish you wouldn’t feel awkward or uncomfortable talking about my baby or being near me. When you do, I can see it. The truth is it’s not fair to make me feel uncomfortable just because you are.

16. I wish you wouldn’t think that you’ll keep away because all my friends and family will be there for me. The truth is, everyone thinks the same thing and I am often left with no one.

17. I wish you wouldn’t say that it’s natures way of telling me something was wrong with my baby. The truth is my baby was perfect to me no matter what you think nature is saying.

18.  I wish you wouldn’t say that this was “God’s plan” or “she is in a better place.”  I don’t believe God would be so cruel to make my child suffer and take her away from me.  The best place for her to be is in my arms.

I had a dream with Hannah in it last night.  A good dream.

I’ve been waiting for her to come into my dreams, just wanting to be able to spend time with her.   All I have had are pictures, videos, and memories … but nothing new.

The only dreams that I have had involving her are bad dreams about those final days and hours that she passed, sometimes reliving it, sometimes my dreams recreate various versions of losing her.  Most of the dreams are life after she had passed – even feeling the grief and loss in my dreams.

Until last night.

All three of my kids, Daddy, and I were at some kind of park or festival or something.   I was sitting on a bench against a wall with a tree shading us.   Hannah was standing in between my legs, holding on because she wasn’t able to stand alone.  She was in a playful mood.  She seemed a bit taller, but not much.  I guess she was probably the height of what she would be if she was still here today.    She was wearing a red sweater.

There was nothing exciting or dramatic going on.  It was just me and Hannah hanging out on a bench.   I can’t even remember any specifics of what we did.

It was such a quick moment.  I wish it was a longer dream or a more involved story.

But I was happy.  Truly happy.  Something I haven’t felt in a long time.