22 months & the way I see things....

Today Freja would've been turning twenty two months old. Unbelievable to think that in two short months, I would have a two year old. It doesn't seem like it was that long ago that she was born. I guess this is just how it will be forever. I'll always hold on tight to those days in 2009 and the years will keep on rolling by.

I've been thinking a lot lately about the way I see Freja. Like when I picture her being here with us, there are always two ways I can picture her: As a healthy child without a debilitating chromosomal disorder, and as a child living with the challenges which Trisomy 18 would bring.

I tend to lean more towards picturing her as the child living with Trisomy 18. After all, that's who she was. If she hadn't been born with the extra chromosome, she wouldn't have been who she was. And I wouldn't change a thing about who she was - except that she would've been able to live.

I wish with every ounce of me that she would've been able to live.

I don't care how many challenges we would have had to face. None of it could be nearly as challenging as having to live without her. I've never been afraid of having a child with special needs. But I've always feared losing one.

That being said, of course I also envision what it would be like for Freja to be here, healthy and able to run around with her big sisters and love on her baby brother. I know that with her diagnosis of Trisomy 18, she never would've been running around though. Her mobility would've been very limited, and she would have had a feeding tube and likely other equipment as well.

I try to picture what it would be like to round up all four of my children and take them to the park for the afternoon. I try to picture what it would be like to pack up everything that we would need for an entire afternoon for a child with Freja's needs. I've never even done it, but I ache to do it so much that I've even fantasized about adopting a child with needs similar to hers so I can have even just a tiny taste of what life might've been like had she lived. I know that we will ever do this though. I think my reasons are too selfish, and of course there is always the fact that I cannot replace my daughter.

I would walk to the end of the earth if it meant my little girl could come home with us and live with us forever. I would spend every second of my existance tending to her needs if it meant I could sustain her life without suffering.

One memory that will always haunt me is the conversation we had with the Geneticist on the day that Freja's diagnosis was confirmed. He rattled off bunch of dire statistics about Trisomy 18, and then told me not to read too much on the internet. Of course, I didn't have access to the internet while we were in the hospital anyway, so I couldn't look much up. Then he went on to say that he knew of one child who had survived several years with T-18, but all the child could do was lay there and smile occasionally. I'll never forget the split-second glimmer of hope I had at that moment. To hear that this child could smile! I remember saying, "I'll take that!" And the geneticist seemed so shocked and quickly tried to extinguish any positivity that I had. I often wonder how he really felt about my child's life. Did he see her life as worthy of saving? Was she just a statistic to him? I bet he doesn't loose sleep every night thinking about her being in that grave. I know deep down that I can't be angry with him - or with anyone because of what has happened. I know that everyone was just doing their jobs and providing us with whatever they happen to know about the latest statistics and research regarding this condition. But, there is always that wonder about what would've happened if we had been steered in a slightly different direction.