After William's diagnosis, I was completely annihilated. There were several days that I had to give myself a pep talk every time I needed to do anything. My need to care for Margaret is what kept me functioning on any kind of level at all.
The day the Neurologist told us he had PVL, David and I had shown up at the NICU early. We knew that the ultrasound from the previous day had shown abnormalities in his white matter and I wanted to speak with the Neurologist in person about his diagnosis. I could see the surprise in the Neurologist's eyes when we walked in as she was preparing to examine William. The director of the NICU was also there; he had been the one I talked to the day before about William's ultrasound results.
The funny thing is that I can't remember a lot about what the Neurologist said. What do I remember? I remember crying. I remember my husband crying. I remember the look of sadness on the director's face (he is also a Neonatologist). I remember that the Neurologist was acting very nervous/uncomfortable. I remember the group of nurses quietly watching and listening to the scene in front of them. I remember there was another Mom with her baby in the pod with us at the time. Her baby was a tiny, tiny one and had been on the vent for a little while. She flashed me a concerned half smile that clearly said she was sorry about whatever it was that was going on. I remember hating her and her "perfect" baby. I wanted to scream at her. Then, thankfully, I remember William's nurse urging me to hold him after all was said and done.
Since that time I have been grieving the loss of my "normal" son. I know there are supposedly five stages of grief and I can say that now I'm firmly in the "bargaining" stage. It is different that I would have anticipated. No, I'm not making deals with God.
My experience is that I am weighing what would be "good" or "bad" as far as his outcome. And depending on my mood, the day, the second, things can get moved back and forth in my mind. In my mind I explore every iteration of his potential disability and try to decide if that is better or worse than the last scenario I thought up. It is enough to drive me crazy as there seems to be no limit to the outcomes I can imagine. I imagine that I can live with the "good" outcomes but not the "bad" (I know this isn't really the case, though). At this point my "good" scenario is spastic diplegia cerebral palsy, limited field of vision but okay acuity, cognitively okay. I've recently added "wheelchair" to the "okay side" in my brain. The cognitive outcome possibilities are where things get dicey for me.
In addition to this bargaining, I am also constantly on the lookout for "signs" that he is going to have problems with his legs, his arms, his vision. I wish that we hadn't found out about his PVL until he started falling behind... it would have been nice to have time to enjoy him without all this weighing on my mind.
Most of all, I just wish someone could tell me how much he is going to be affected by his brain injury. But no one can. Not even a best guess. And that drives me batty.
10 comments:
Hi Lisa, I'm not quite sure what I wanted to say...I just wanted to send you some hugs right now..Thoughts and prayers for things to go the best that they can! Hoping for that best possible outcome for you!
{{{{{{{{{{{{Lisa}}}}}}}}}}}}
I agree, the not knowing is by far the worst part. Hang in there, God can work miracles.
The waiting is the tough part. I hate not knowing and waiting to see how things turn out. I just wanted to send hugs and prayers!
Enjoy those little ones!
Dearest daughter,
My heart goes out to you in your grief. Neverfear, William will grow and develop to astonish you. He can already do something (in your photo) that few adjusted six week olds can do! Afterall, you and David gave him enough excess brain power that he could lose some and still be a champion.
Mom
It will take time. When my oldest received his diagnosis, we were devastated. His outlook was very grim. But he has sure shown them! Mostly now we deal with behavior issues. People can tell there is something not totally "right" about him, but he seems mostly normal. He runs and plays, and is in the top reading group in his class!
There is hope. But I will say, even now, almost 7 years later, there is still a twinge now and then. A twinge of "what could have been" But I try not to dwell on it. And it really helps when he looks at me and says "You know what mom? I love you!"
:-)
As hard as it is you have to stop looking for the problems every day. Yes, you want to identify them as early as possible in order to get appropriate help, but I've noticed how much more freeing it feels when you just 'let go, let God' so to speak (and I'm just about as anti-religious as can be).
There comes a point when you just can't do it anymore - I reached mine and it feels great to not have to analyze and worry 24/7. Now I only do it about 20/7... its a start, hopefully I can let go completely soon.
I hope for the same release for you.
Hi Lisa, I just found your blog by following your comment on my blog back to you. Ellie has diffuse PVL as well. She is 4 and wonderful and has quadriplegic cp. she also had a brain bleed and led to hydrocephalus and more brain damage when that wasn't managed well by the doc. I am only telling you this so you don't think she is the poster child for pvl.
I think the thing to remember is that as he changes and grows so will you and you will be able to deal with whatever that means. It may be hard at times but he is still your beautiful son. So have hope for him and get him lots of early intervention and stimulation (what he can handle).
I am also a big believer in Hyperbaric oxygen therapy (available in the states everywhere) and neuro respiratory therapy we do at Advance in England (dave and I do this 6 days a week with Ellie) now. we started that when she was 2 and the Hyperbaric when she was 1. I wish I had started both as soon as we left the NICU.
I remember crying a lot too since i first saw her in the isolet and then daily for the 133 days she was in the NICU. The doctors told us she would be a vegetable if she survived at all. As you can see from our blog - she has done really well.
And your baba in just being on his tummy and holding up his head so well is doing way way better than Ellie was at the same age.
Great to find your blog. Thanks for your comment on mine.
PS - you have a cool mom who is absolutely right on with her comment here. Lucky you!
Just stumbled onto your blog for the first time today. The "not knowing" can definately be one of the hardest parts. Just remember to take it one day at a time and that you are not in this alone:) ((HUGS))
I just read your post, and it is like I could have written it myself. My son Fletcher was born at 25w3d on December 1, 2006. He had no brain bleeds and no abnormalities on his head ultrasounds on day 2, day 7 or day 28, but his MRI done routinely before discharge showed severe bilateral pvl. The docs are still scratching their heads.
He is 5 months old adjusted and his delays are starting to become more and more obvious. I know the CP diagnosis is just a matter of time, and I have been in the "good" outcome "bad" outcome bargaining stage for a couple of weeks now.
Just wanted to let you know that this post really hits home and, although I hate that someone else is going through this, it is nice to know that I am not alone in my insanity.
Take care of yourself and your beautiful family,
Erin
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