Rachel's Last Day with us (Aug.5)

.....or her First Day with Jesus (hmm...except for God one day is like a thousand years!...amazing to think of and difficult to understand - our minds are so very limited...) Re-living this day was tough.  I wrote it yesterday afternoon (thank-you Dave for giving time for me to do this!) This is what I remember about that day:

On the morning of August 5th, I woke up feeling unsettled, anxious about Rachel.  It had been a restless night.  I thought I heard her crying in that strained way before a spell, ALL NIGHT.  And so after my alarm went off at 7:30 AM, I practically raced down the stairs, expecting to see that she wasn't well or to hear bad news.  But to my surprise and relief, she was pink and seemed happy to see me! I thought she was so beautiful.
I remember standing at the door and saying good-bye to Esperanza, the respite worker.  And then the feeling of surprise as I realized how very little milk Rachel had consumed during the night.  She hadn't eaten much the whole day before either.  A friend had been over and I know I couldn't stop exclaiming at how content Rachel was and how easy it was to take care of her - that she only needed to eat every hour and a half or more.  This was extremely unusual. But I didn't think too much more about it. Rachel still looked well.
Soon after I brought her upstairs, Rachel started fussing.  She didn't want to eat, so I put her down in her bed and she fell asleep almost right away.  I remember feeling happy about this - I had lots to do that day.  I got busy with the kids and laundry and usual household stuff.  I washed ALL of Rachel's clothes and most of her blankets - and the thought struck me (and I haven't thought this in a long time): WHAT IF today was the day that Rachel would die and I wouldn't be left with any 'dirty' clothes of hers to smell and hold?  But I put that out of my mind...(this later turned out to be true - and the clothes she was wearing needed to be washed afterwards too)
Rachel slept all morning, right up until the first awful spell.   I remember how different everything seemed - the long stretch when it seemed that she wasn't breathing at all, the way she stretched out her whole body and stiffened her back when she usually stays fairly curled up....(I remembering marveling at how long she was), and I remember the sense of denial that this could really be it.  I wanted it to stop so we could go on with our day...I wanted to pretend it wasn't happening.  I was relieved and thankful that friends were taking care of our other two when it happened.
After that awful, long spell, we gently laid her sleeping body back into her bassinet.  Dave left again to do some work.  I spent a few minutes sitting beside her, watching her tiny chest lift and fall with her shallow breathing.  And then I went back to my own work.  We had gone through this so many times already, and even though things were different (now in hindsight, we can see all the signs more clearly) -  the possibility of her dying that day wasn't real in our minds.
Later, she stirred and I remember feeling a bit impatient.  Her cry sounded like the normal cry for milk and I was writing on the blog - about her first spell, I think.  Or an email to a friend.  But I quickly ended what I was doing and went to get milk.  She didn't settle easily.  Finally I just stuck the soother back in her mouth....and held her on my lap in front of the computer.  I could tell that she was trying hard to open her eyes to look at me but her eyelids seemed so very heavy.  I don't think it took long and she had fallen asleep in my arms.  Now one of my biggest regrets about that day  - is that I didn't spend that time focused on her, loving her.  I chalked up her drowsiness to the seriousness of the earlier spell and the drugs we gave her.  But if I could have known that this would be the last time I had held her alive, I would have done it so differently.
Then the other two kids were dropped off and I put them in their room to have a bit of quiet time.  Dave stopped by home.  He was thinking of leaving again.  We talked about whether we should cancel the BBQ we had planned that evening at our house.  I said that I had a bad feeling about Rachel and so we called everyone to cancel.
A bit later, I called up one of the moms we had invited and told her she could bring her eldest daughter over for the evening.  Abigail had really been looking forward to playing with her.  At the end of the conversation I could hear Rachel crying in the office - and it sounded very distressed.  My heart leaped up in my throat again and I asked Dave, who was tending to her, if Rachel was ok.  Dave fed her - and she ate a whole bottle-full.  But then almost immediately after, she went into a spell.  Dave said "Meds!" and I ran for them.
At this point, things seem so hazy.  Dave and I have tried hard to remember the order of things.  We talked about it just a few hours later that day and then quite often after that but we still can't remember.  But this is kind of a mixture of what both of us think happened that afternoon around 3:45pm...
I remember fumbling with the meds, not finding a part of the syringe, and feeling so frustrated because I wanted to be with my little girl, not running around the house.  The thought crossed my mind that the meds were useless anyway - that I should just do what my gut wanted to do - GO BE WITH HER.  But I did it anyway. When I got back to the office, I gave her the two shots nasally.  She didn't react at all - which is very unusual.  She hates having us put fluid into her nose when this is her only avenue of getting oxygen (her glottis closes in the spell).
Then all of a sudden milk was pouring out of her nose, flooding out everywhere, and she was unresponsive.  It felt so strange to see this happen and not see her react in any way - not make any movement at all.  That's when I panicked inside and I walked around the corner.  Dave was trying to wipe it away from her nose....and I could hear the shock in his voice as he told me what was happening and he asked me for a suction bulb.  I brought back the bulb but when Dave tried to use it, he said he couldn't get a seal, that it wasn't working at all.
We think at that point, she took one sudden deep breath.  I remember being surprised by it - and for a second I thought she would come back.  Her bottom lip tremored for a bit in an odd way, but then we noticed that she was completely still. We called the Palliative Care Doctor on call who happened to be Mala Arasu. (also the one who was with us when Rachel had her first spell!) We checked for a pulse, nothing.  And felt her fontanel for a pulse and there was nothing there too.  And then we knew.
We may have talked about this moment for almost two years but it still seemed unbelievably sudden.  It felt absolutely impossible that she was really gone.  And yet, we couldn't deny that our little girl wasn't there anymore.  I could have closed my eyes and still I knew without a doubt that this was true.  Our social worker from the FH told us later that no matter how much warning families have, when death actually comes - it always feels sudden.  So true...
After she died, I took her from Dave's arms.  I walked into the kids rooms where they were sitting awake in their beds.  And I told them that something had happened.  We all sat down on Abigail's toddler bed and we showed Rachel to them.  And we cried and we told them that she had gone to be with Jesus.   We took a picture of our family sitting there with Rachel.
Time stopped for us.  Dave held her again and I walked out to the living room, in shock.  And then for awhile, I stared uncomprehendingly at the sight of my friend walking up the sidewalk with her girls.  Finally, it registered.  She was bringing her daughter over to play with Abigail.  I stepped outside and told her with my shaky voice what had happened.  I'm sure she felt pretty shocked to hear it too.  And then there we were standing on the front lawn....
Across the street people were talking loudly as they worked on making a new cement path to another house.  I remember feeling irrationally angry at them.  Couldn't they stop what they were doing? Didn't they know what had just happened in our home?  That right now my husband was pacing the house, sobbing as he held our little girl?  And then Ethan was running around on the lawn, calling out to people passing by, telling them that his baby sister just went to be with Jesus...and they didn't seem to notice.  But all of this just registered in my mind as completely bizarre......I thought I must have gone crazy.  Angry and crazy.
That's when I so desperately wished for our family.  Oh, for someone to come and take over.  Tell us what to do. Take our kids. Hug us. Cry with us.  It was a terribly lost feeling.  And there was nothing I could have done to prepare myself for it.  In fact, there were things I always thought I would do after she died, that I didn't do at all.  For one, I had carried around the materials to make 3D hand and foot molds for her entire life!  (I thought we would get better molds if she wasn't moving.) But it didn't even cross my mind...and every decision felt overwhelming.
I didn't know what to ask of my friend who was standing there on my lawn, our four kids running around our feet...and I'm sure she felt lost too.  Finally we decided that she could take the kids to the back yard (thank-you!) so that I could go back inside and be with Dave and Rachel.  We started to make some phone calls...and we were so glad for the company of those who came when they heard the news.
We kept Rachel's body with us for at least four hours afterwards and we were glad for this time.  It helped us in the process of 'letting go' of her body.  I changed her once and we both studied her body one last time, before wrapping her up again.  I dressed her in the last sleeper I had purchased for her from Costco, a nine month blueish sleeper with pink bees.  And the pink, purple and white blanket that she used so often.  And in the last hour or more, we left her on our bed so that whoever wanted to say good-bye to her then could do so.
We took more family pictures on our bed.  And maybe this sounds morbid and hard to understand but we are glad we did this.  I already wrote about how our respite workers and others from the Spanish church prayed for us. Dave called the funeral home and arranged for them to come around 8pm.
And then we carried her to the waiting hearse.  Laying her body in their bassinet and watching them zip up the black bag and secure her on the stretcher....and then watching the car drive away was one of the most difficult things I have ever had to do.  Dave said that he's not sure he has ever heard me cry that hard.  Somehow I made it back into the house and sat at the piano and sobbed.  Oh, my girl.  My little girl.
I know she is with Jesus.  But right then, all I felt was the loss of her.  I know she is not really mine.  I know she was really a gift for a time.  But I had to give that beautiful gift back and God knows our pain in doing so.  The grief was deep because our love for her was deep too.
A friend said to us, that as she read the news, she imagined a collective cry of sorrow that went up to God that day as so many people found out that Rachel had left us. I thought that was such a beautiful comforting picture to me of how we were not alone in our sorrow.
And we know that God is with us in the dark times of life.  We know that He was with us on August 5th at 3:45 pm in the office.  There was a moment when we were standing with her in the office, realizing that she was gone, that I had a sense of something very Holy.  It wasn't really a feeling, so much as an awareness of God, which was also based on what I believe about God.  That is so hard for me to explain.  And maybe I just can't.  Rachel's death was not pleasant and I don't believe that God promises that just because we follow him, that our deaths will be easier - but He does promise to be WITH US.  I don't understand all of that - in fact I would really like to see with my own eyes that Rachel is truly ok - But I choose to trust that she KNEW her Good Shepherd and was loved by Him from the moment after she took her last breath.
As I mentioned earlier, I have wrestled with some remorse about not giving more attention to her the day she died.  I'm told it's pretty natural and as I thought through it later, I realized that no matter how or when a death happens, we will always wonder if there was something else we should have, could have done differently.  I have also mourned the loss of my idea of how her death would happen.  I think I had a semi 'romantic' idea of being able to rock with her in the rocking chair, to sing to her and have plenty of time to say good-bye.  Truthfully, I am glad she didn't go at the end of a long difficult spell, even if it had given me time to say good-bye - and I had prayed that God would not ask us to go through another drawn out two week period with the shadow of death hanging over all of us as it did shortly after her first birthday.  But I tell myself that no matter how it would have happened, I would find something to change.  There is SO MUCH that I thank God for as well.  And I am learning to let go of what I wanted to happen and give thanks for His provision.  One thing we are so glad about is that we were ALL home when Rachel died.  We know it could have been so different.  A few days later and Rachel might have died at the Flames House while the rest of us were camping over-night elsewhere. I am glad, so glad we were together and didn't have to rush back from somewhere and have missed this altogether.
And another thought - Does it really matter to Rachel whether we loved her perfectly on that last day or not? She is with Jesus, she is ok! It is really only us who wrestle with the what ifs.  Rachel doesn't think about them at all.  Knowing this helps a bit.  I can't help wondering what she is experiencing....and I have some thoughts about this that I might share soon.  But for now I had better post this thing before it becomes a book.....;) Thank-you for reading this far!