I’m going to be okay

It has been six weeks since Hannah passed.  Only six weeks.

In the past few weeks, I have gone to two parent bereavement support groups, and I have met some wonderful parents.   I have also been reading a book on grief and been looking at a website where other mothers who have lost children share their stories.

I have come to the realization that our situation is so very unique, and it is in a good way.

Hannah was always loved, always happy.   From the day she was born until the day she passed, she was smothered with love and kisses…every…single…day.   Up until those last few months when her brainstem irritation and progression had brought us to the “end stage”, she was just a very happy and smiling girl.

We were able to give that to her.   Everything and anything that made her happy, we gave it to her.  If she threw a tantrum, we happily gave in just to see that smile on her face.   I can’t think of a time where we ever said “no” to her!

I keep reminding myself of how much she loved to be cuddled and sung to, about how she couldn’t fall asleep unless she was snuggled in our arms.  And then, when it was time for her to go, she was snuggled in the arms of everyone in our family and good friends at one point that week.

Finally, in the end, she was snuggled in mine when she finally left.

But it is not only that.  Those 7 weeks in hospice, when she was mostly out of it and unresponsive, she gave us a gift we didn’t even realize at the time.   The gift of a slow mourning and to start the grieving process slowly instead of instantly, to get our heads wrapped around the idea that she was leaving us.   She gave Ethan and Abby a chance to give her love and kisses every day and yet, she still gave them a chance to say goodbye.

She gave all of us a chance to say goodbye.

I realize after going to these support groups that most families are not as fortunate (if you can use that word) as we were.   As much of a hell it was having to go through it for us, it was always on Hannah’s terms.  It was always surrounded by love.   Most importantly, for those last seven weeks, there was always someone who loved her with her every minute of every day.   Whether it was me or Daddy, or one of her nurses who truly cared about her, or laying peacefully in her grandparents arms with her little nieces smothering her with kisses.

Actually, if I really think about it, every single minute of her life, even before her condition significantly worsened…she was always with someone who truly loved and cared about her.  She was never really alone.    Wow, I really never thought about that before!     She never went to school, never had to be in daycare, and with the exception of those few days when I was hospitalized last year, she never was away from me (but she had her Daddy and his family when I was in the hospital).

And because we were in the hospice program, Hannah never had to go through the criminal or autopsy process (which would have happened if she passed away and we were not in hospice).    When she was done fighting, she was able to truly be at peace.

Unlike many of the families we have met, there are very few big regrets that we have.   We don’t have any “Oh, I should have been more…” or “I should have watched out for…” or “She should not have …” or “If she only didn’t ….”.   I never realized what a heavy burden it would be on my heart forever to have such a big regret after losing her.   But I know that we truly did everything we could to give her the best life, to reach out above and beyond to the Gaucher and other researchers and community.   I have peace in my heart with respect to the big things, and I never realized how important that was in this grieving process.

I still miss her like crazy, and I still have my moments that I have a mini-meltdown because I miss her so much.   But after meeting other families and hearing their stories and reading some other stories parents have gone through, I truly appreciate how blessed I was to have things play out how they did.   It could have been so much more traumatic for our family.

Having our focus on our Little Miss Hannah Foundation is a huge part of this acceptance because it is a chance for us to think about her every day and be reminded of all the positives she gave us and will continue to give us.  Working on her foundation is giving her spirit a chance to live on, live on long past her physical life with us.

I know that in time I am going to be okay.  The kids in time are going to be okay.   Daddy in time is going to be okay.   I know there will be more bad days to come, but I have to accept that it is going to happen.  As a dear friend said to me, “Allow it to happen and don’t hold it in.”

I should probably bookmark this entry to remind myself of this when I am feeling really depressed.

Now, off to take my Lunesta so I can try and get some sleep!   Yep, still have the issues with nighttime but I’m hoping that some real sleeping meds can help me with that.