And you know, the one thing that stuck with me from the appointment today, was something that I already knew. I know that Faith has a developmental delay. I know that Faith is about 2 years behind in a lot of her development. I know this. I have accepted it.
But the way it was explained today really hit home for me.
Faith is a 2 year old in a 4 year olds body. That is why her strength during a rage is so high. That is why I can barely restrain her when she is in that rage. She is 2, without the understanding of why she is having a tantrum...but her body acts it out like a 4 year old.
This also relates to sleep. Infants sleep all the time, toddlers sleep a lot, but don't need as much. Preschoolers need less then toddlers etc...So, Faith is a preschooler, she is 4 years old and her body doesn't need as much sleep as it used to.
BUT her brain is a 2 year old...which still needs a LOT more sleep then a 4 year old...but her body isn't going to.
The dr also said, actually reinforced with a long pause afterwards, that this is NOT all our fault. We need to stop blaming ourselves. We have a part in the sleep issues, but Faith has a brain injury and will always need to have things done differently.
This acceptance process is so much harder, and takes so much longer then I had ever, EVER expected...
All in all, it was a good appointment. We have to set up a very rigid bedtime routine, that we never waiver from. Weeknights, weekends, summer holidays etc...always the same.
That is what we are going to start with. Then we are going to talk with the neurologist in April about seizure detecting devices while sleeping. That will give us peace of mind. Plus we are waiting to be seen by the Psych clinic in London, for kids/people with brain injury resulting in behavioural issues.
I feel good after this appointment, but still feel kind of sad....The reality is, we don't know how much farther Faith is going to come. And I am always the optimist, seeing the best in every situation. And I am not limiting Faith after this appointment. But I am also going to be realistic with expectations for her. As a 2 year old. It will be less frustrating for all of us...
Digestion can hurt sometimes...
Ruth, I remember getting the same news about my oldest son Jonathan. Tomorrow he turns 22, and he has a part-time job, and is quite self-sufficient. He is still behind, and in most ways, my 18 year old son, has overtaken him. But it does get easier as time goes on. Keep your chin up!
ReplyDeleteAw, Ruth! WOW, what a revelation. It's good to hear the words, but like you said, it must be hard to reconcile it all in your mind and your heart. I hope you really do take those words to heart:
ReplyDelete"This is NOT all your fault. You need to stop blaming yourselves. You have a part in the sleep issues, but Faith has a brain injury and will always need to have things done differently."
Hugs my friend! You are an amazing mom, and I know that you'll do anything that Faith needs. It's even trickier when there are so many 'special' needs involved, but that just makes what you do even more special!!
Praying that you digest this with the Lord's help, and I'm so thankful for good doctors who can explain things just the way we need to hear it sometimes.
Luv ya, lady!
~ Raylene
That is a great doctor to know how to put it all in perspective. I can see how that explanation of what you are all experiencing can go a long way to helping you cope "in the moment." And being reminded it's not your fault is important too.
ReplyDeleteAll the best to Faith and you all
I must reinforce the fact that this is not your fault.
ReplyDeleteI am also glad the doctor gave some helpful perspective.
Just wanting to send along some {hugs}