Dave went to a walk-in clinic yesterday because his cold has been hanging around for a long time and we thought he should get it checked out. (many children that come into the Hospice have comprimised immune systems) He told me that at first the Doctor was sympathetic when he told her about Rachel. But then she decided (very foolishly) to say that when she sees people in our situation during pregnancy, she advises them to have abortions. She said that it is too disruptive to people's lives to carry the baby to term and face all the challenges of having a sick child. Did she actually say that out loud?? To a parent who obviously has chosen not to abort their child? Was she thinking that we would agree with her? Or even want such advice? It was really hard for me not to feel irked about this. In fact, I felt dowright angry. I realize that not everyone will agree with our choices but this was really inappropriate.
And another thing - If Dave gets hit by a car and it leaves him a quadrapeligic tomorrow, should I leave him because it is too disruptive to my life? What if Ethan develops severe life threatening Crohn's Disease? That's a disruption. Does his life then hold less value than that of a healthy child?
The path we are on with Rachel is not easy. It is very hard. But we have no regrets. All I have to do is look at my beautiful daughter's face and know that I am glad to know her. That I am blessed to know her even for a short while. Glad for the learning that can only come from 'disruptions' and difficulties in our lives. That poor doctor doesn't understand this...
But, on another note....We are enjoying our stay at the Hospice. It is wonderful to be able to sleep all night. And Dave has managed to get his work done, despite a cold. When he was not working, we did a few trips out together. This morning we took the older two out to Prince's Island Park. A few days ago, the whole House went to Heritage Park together. Dave took the kids and another mom's son on the Steam Train. Last Tuesday I took all three kids to Bingo at the Children's Hospital. There were alot of amazing prizes and they make sure that all the kids win at least something. Ethan and Abigail both won (it was a bit challenging keeping an eye on both their cards and a fussy Rachel at the same time). Of course they had to go and pick largest, noisiest, plastic toys!
Ethan has watched the STARS helicopter come in a few times as well. It is interesting to watch but I feel sadness watching it too. This morning, I found myself crying as we watched it come down. Sometimes it seems that healthy children are the rarity and that it is impossible for children to live long accident free lives. Sometimes it feels overwelming to hear everyone's stories. At the same time, by hearing their stories it causes me to "SEE" them and their children in a different light. I can't explain it. But I am glad to hear them and to know these people.
I can't help thinking too of all the women in our world who watch their children die, of hunger, in war, or of sickness...Our story is not unusual. Rachel is not the only baby to die. These women don't have blogs or write books. They don't have Hospices or havens to shelter them. But God sees them. And He has compassion on them. Let's not forget them!
Rachel is staying steady at mid 60% oxygen levels. Something new is that she is playing with her hands now. They don't open up fully and some are crooked but she still manages to get a thumb into her mouth sometimes. She is still drinking small amounts. She is still coughing and throwing up after a feed. (which also means more frequent feeds) We were told that we can stay at the Hospice until next Thursday.