Tuesday, October 14, 2008

In my head

Last night as Finn slept soundly in his bassinet for the eighth consecutive hour, I sat up in the rocking chair, close enough to his bassinet that I could hear him breathing softly. I was unable to sleep, partly because I kept waiting for him to wake up (he ended up sleeping a solid 10.5 hours!), and partly because sometimes I can't turn off my thoughts. So as I sat there, listening to Finn breathe and wondering how long I should let him sleep without worrying, I tried to sort through all the stuff drifting around in my head.

My friend, Laurie, sometimes refers to "the dark side." I can so relate to this term, because it's a place I visit myself from time to time. The dark side is the place in your head where all your fears and worries lurk, where the present seems unfair and the future seems bleak. And I guess that's sort of where I am (again) right now.

I picked up Gifts yesterday and started reading it in an attempt to pull myself out of this rut and feel inspired. I can hardly get through a single page without the tears falling. The stories are inspiring, but I feel like such a failure. Why can't I accept Finn's Down syndrome with the same grace as these other moms? There is still a part of me, after all this time, that still hopes for a way out of this.

We have an appointment tomorrow morning with the geneticist who made Finn's initial diagnosis. The appointment is for a consultation, to talk about the possibility of doing a further genetic workup to determine if Finn has mosaic Down syndrome. My understanding of the initial workup done on Finn is that a sampling of 20 blood cells were examined, and of those, 3 were karyotyped. From what I understand, hardly enough to determine if there are, in fact, 2 distinct cell lines in his body - some with an extra chromosome, and some not. What led us to seek this out has been comments and suggestions by several people, including our pediatrician and Finn's physical therapist, that not only are his physical characteristics subtle, but so far, he seems so mildly affected both physically and developmentally (one of the most notable things about Finn is the absence of hypotonia, or low muscle tone, commonly associated with DS).

But I'm suddenly feeling apprehensive about the appointment. And in analyzing my feelings about it, I keep asking myself "Why does it matter? What difference will it make?" After all, Finn will still be the same Finn, with all of his capabilities and limitations, even if his diagnosis gets a modified name. All along, since we decided to pursue this, I've been telling myself that I just want to make sure we have an accurate diagnosis, that's all. And while that is true, it's not the whole truth. If I am honest, then I have to admit that I am hoping for a diagnosis of MDS, because it seems better . . . less severe . . . more hopeful. Which, rationally, I know is simply not true, because a diagnosis of MDS is no more a guarantee of any particular outcome than Trisomy 21 is.

Sometimes I just don't want to do this. I love Finn so much, and can no more separate myself from him than I can separate myself from my own arm or leg - or heart - but I don't want this to be our life: the constant worrying over both concrete and abstract things, the working extra hard to achieve what comes easily to most. And although I know he will one way or another have a full life, I don't want his life to constantly be a matter of trying to overcome - overcome delays, overcome medical issues, overcome preconceived notions and prejudices.

My ups and downs about all this certainly seems to go in cycles. I'm sure in a few days I'll be feeling more positive again.


And on another note, Finn's weight gain seems to be petering out again. He went from gaining 1 - 2 ounces a day to only gaining 2.5 ounces over the course of a whole week. I'm sure this is attributable to his sleeping longer at night. So far he does not seem to be making up for it during the day, so I think I am going to have to be proactive here and make sure he gets more during the day. Stay tuned.


Laurie said...

I'll be curious to hear about what happens tomorrow. Make sure you kup.
It is such a roller coaster ride, this whole thing. Im the same way...some days are certainly better than others that's for sure. It's ok, tho, I think. We'll get there...we're doing the best that we can.

Cleo said...

Every person comes to terms with life experiences at their own pace, the best way they can. I think that your hopes about Finn’s mds diagnosis has been keeping you from moving forward in the highs and lows of this acceptance process. Lisa, perhaps tomorrow and/or when you get the results of the additional genetic work, because of a more final-accurate diagnosis, you will have some closure and will continue with the usual cycles of grief and acceptance. We all experience challenges in life and with determination and tenacity we can triumph over them.

Jeanette said...

I stumbled across your site. I am a mother of a 15 month old baby girl with DS. You are in a tough place right now. For everyone, this initial stage is different. Don't worry about comparing yourself with others. I found out during my pregnancy so my story is different. I can tell you that as a mother of a child with DS, they are more alike other children than they are different. It sounds cliche, but it is true. Especially now. Your son is just a baby, like all other babies, so don't fret over the future. You have a long way to go before he grows up. You will find your place in the world of Down syndrome and someday you will have your own "Gift" story to tell.

Mrs. Mother said...

Your son is beautiful. I worked with someone whose granddaughter had Down Syndrome. She said her daughter had a really rough time at first, because had to mourn the loss of the child she thought she was having. It didn't mean she loved her daughter any less; she jsut had to accept a new course of dreams for her child.

I lost my baby girl, Jenna, to Trisomy 18 in August. I wish our children didn't have to be affected by any trisomy.

Jaida said...

Hi - I'm mom to a 23-month-old boy with DS. Also diagnosed a week or so after birth, following abdominal surgery (your story really resonated with me). I empathize with so much of what you're feeling right now. I felt like it took a long time for me to "come to terms" with the diagnosis and I still have my moments. With every passing day it gets easier though. I think the hardest part in the beginning is that - let's face it - babies don't have much personality for the first few months. So it's hard to look past the diagnosis to the person they are and will be. Don't push yourself too hard, and feel what you're feeling without guilt or shame. I promise there are bright and beautiful days ahead with your boy.

Alycia said...

Remember that the weight gain should slow down the older he gets. It seems like positve sleeping patterns are more important. Ask your pediatrician about it. Has he been less cranky with more sleep?