Day ????

My "weekly" posts are being stretched further apart with each posting now. I believe I have hit the two week mark for the first time in awhile. I've gone long enough that I've lost count of the days post transplant.

It's definitely a sign of good things: with less trauma and excitement I feel that I have less to report.

Zoe just thrives, that's the gist of it all.

She's massively delayed for her age, but for HER, for Zoe--she is amazing. She's a master at rolling over from front to back. She's an accomplished sitter, and she's slowly learning that supporting her body weight using her feet and legs while being held upright can be a fun thing. Zoe jabbers and laughs all day long--interspersed with healthy amounts of whining of course--filling our house with happy baby sounds.

We are blessed.

That isn't to say that we are not still suffering from too much sleep deprivation, nursing fatigue, doctor and therapy appointment overload, and accompanying mood challenges, because we are.

But, I'll take it all because it's all part of what has allowed us much more time with this amazing little girl.




This last photo is a picture of Zoe during one of her sessions with the speech therapist whose other specialty is helping kids learn how to eat. Although the photo makes it look promising with the scooper of food in her mouth, Zoe still refuses to have much to do with food.

Check YouTube for eating therapy vids...

Day 135: The Dark Side of the Coin

Zoe is doing great--just some issue with a diaper rash from hell and some accompanying diarrhea (aren't you glad you asked?). I placed her on her tummy today with her bottom bare to give it an airing--eventually I glanced over to find her on her back. That's the second time in a little over a week she's rolled over on her own. At seventeen months old it's not very precocious for her age, but for Zoe it's perfect--and we couldn't be more thrilled.
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I've been dragging my feet in writing about this next bit, but here it is:

Remember the UK family I once mentioned who has a girl, Alishba, just a few months older than Zoe with osteopetrosis as well? I don't know if I mentioned that within days of her diagnosis almost a year ago her mother found out that she was pregnant again.

That child, another girl, was diagnosed in utero with OP as well. Simrah was born March 10th this year, and started her transplant proceedings a month and a half later.

Simrah contracted an influenza virus a few weeks ago during her transplant process, was on a ventilator for several days, and so tragically and unfortunately was not able to handle the stress of it all and passed away on May 25th.

Her family, understandably, is in shock and grieving. I think of her mother and can barely hold the comprehension of her pain in losing a child so soon after giving birth it.

There it is. Right there. The other side of this crazy coin toss that we have experienced.

I am in communication with Alishba and Simrah's twin aunts, and to them I sent this email that better expresses what I can't seem to access now while I write of this:

Oh Loves,

I'm just sick for you. There is no getting around the pain you all have to go through.

I don't know if this brings any comfort at all, but when we were on the other side of the transplant process, being told that Zoe had a 50% chance of survival, we had a couple talks with a Zen Buddhist monk who counseled us.

He told us that this whole experience was about Life and Death. That there was no softening that fact.

Life.
Death.

He said that Zoe was still so close to her state of Being before Life, that if she had to go, it would be a familiar and comforting place for her. It would not be a scary Unknown--for her.

Does not really make it easier for us--for you, the family that is left grieving Simrah's retreat back to the Beyond she so recently emerged from. It's not fair, it is horribly painful and beyond ghastly and tragic to think of the path leading up to her departure.

It is a shock to see how horribly wrong this process can go. It does reduce me to tears whenever I think of your little angel--and it's nothing compared to what you all are going through. I know it brings home how easily I could have lost Zoe myself.

I am so grateful that Alishba and Zoe are both doing so well--what a healing salve of a girl your niece must be to you all! Just as I smother my girl in hugs and kisses --smother that little one of yours with the same!

I wish for you two love and comfort and healing for the pain of your loss of little Simrah. I don't know that I believe in a God, but I do believe in the primordial soup of Love that is the base of all Being--and know that Simrah is cradled tight in that Love that was, and is, her Birthright.

As it is for all of us.

xxoo Kellie

If any of you feel as though you would like to send your words or thoughts of comfort to their family through Shaheena, one of Simrah's aunts, you can contact her through her YouTube channel--and see videos of Simrah and Alishba as well.