Wednesday, April 07, 2010

Treading In New Waters...

Be forewarned-----this IS an emotionally induced post in which I spew some frustration...if you want your day to remain pleasant, please skip!!

This is Faith...she is the perfect ending to our family! I wouldn't change her for the world...She has taught me more about life than I think I can ever teach her. I am now starting to realize how fortunate we have been regarding her care and doctors to this point...

My mommy "gut" has been unsettled for the past 6 months to a year...I can't put my finger on it, I can't figure out exactly why I am feeling this way, but the fact of the matter is...I am. I feel like, even though we have come so far, even though we are in a much better predicament then we were once told...There is still something that we need to find an answer to.

A few of my workers have told me that many families, when there is no diagnosis, or the diagnosis doesn't fully make sense, continue searching. They can spend their whole lives searching, for that answer that the have never gotten...and may never get...

I feel like I am in a similar position...we have the diagnosis, but I am feeling like that has become the doctors easy way out of everything, or every question or concern I have ever raised.

Faith has an Acquired Brain Injury, along with other diagnoses, that I am not concerned with. This ABI has been the explanation for every.single.problem. I have ever brought up to discuss with the doc. While I understand there is a brain injury, I feel that there could be another underlying condition that is going to continue unnoticed...

My concerns, I feel, are very valid. She apparently has severe brain injury, but presents with almost none of it...We see a lot of frontal lobe behaviours (social skills, aggressiveness, lack of emotion or inhibition). So, rewind...they told us, with 100% accuracy, that she would have some massive issue, she was able to work through almost all of them...what we are left with is just a dream, considering.

So, to me it doesn't make sense to blame it all on brain injury. I feel, like really feel, strongly that there is something else. I found what I would consider it to be, somewhat. Angelman Syndrome (there is a link to a PDF about AS) is what I have found. I was not searching for this, it just kind of popped up...I have never heard of it before. Faith displays so many of those signs and symptoms that I contacted the association here in Canada. Angelmans is a chromosomal condition. It is the 15th chromosome from the mother that is affected. This means that it is not hereditary, not every child in 1 family will have it...someone born with a brain injury could have had it to start with. This seems to be a spectrum, from what I have reasearched right now. It can go from severe to mild.

I printed off all the information for the doctor, that I had been sent from the association, and added a little note..."while I understand that Faith has a brain injury, I would like the opportunity to rule out this one condition" Nice note, not rude...

I got the phone call today, from the doctor. She doesn't believe that a referral to a geneticist is warranted...Faith is not severe like she has read about...and afterall, Faith does have a severe brain injury...the easy road...

And now, here I sit...crying, upset, angry, sad, frustrated. Knowing that I have that inkling, that unsettled feeling...and knowing now, that everytime I think I may feel something it is going to be explained off as a brain injury...

This is new water for me...The not being heard, the feeling that I am not knowledgeable enough to come up with another option...

A good friend asked me the hard question, she prepared me for this...she asked me when I was going to stop searching... (it was asked in love:-). At this moment, I feel like I will never stop...because I feel like I am not being heard...

My actual response at that moment though was, in fact...after seeing a specialist - the geneticist- and having them tell me whether they think my concern is warranted...then I will stop.

I just want to be heard and acknowledged...and I feel like this is just the beginning of my role as an advocate for my daughter...we have been so blessed this far...

And now I question how far is worth far is far do I get into this while potentially missing out on life...and how do I let it go???


  1. You can do this search with balance and you won't miss out on anything...
    You are a good mom and you have a good husband and you have good friends and family to back you up

  2. Ruth, one thing I have learned over the years is to trust my instincts because every single time I dismiss them- I found out my instincts have been right every single time. I am not talking about my feelings of worry or other emotions- the gut instinct is much different. I encourage you to keep searching for more knowledge but don't let it consume you.

  3. You absolutely have the right to have this looked into further. Sometimes it works better to have a face-to-face conversation with your doctor. Call the office and see if they would be willing to schedule a kid-free office visit, then go in armed with facts and figures. Take the information you sent to the doctor as well as evidence of the symptoms you see in Grace, dates, frequencies, etc. Doctors are scientific people by nature and they do best when you hand them empirical evidence instead of generalities. Your doctor wants what is best for your child too (or should) and if you can help him or her gather the evidence, they should be more than willing to look at it.

    If you have the sit-down with the doctor and they are still doing the brain-injury cop-out, then it might be time to start the search for a new doctor.

    Good luck!!!

  4. I think what you are going thru is a different degree I felt like that when J was first took a different Dr way more tests and we found out the first diagnosis was correct but it sure made me feel a lot better to have ruled out everything else completely!

  5. You have every right to go see a geneticist. I can't believe your doctor won't "let" you. I would be firm about it and say something like 'it may not be the right path, but it would make me a lot more comfortable if I went and saw them' or something like that.

    Good luck in your journey. *hugs*

  6. There's no magic timeline you can set in advance. You'll know when you've arrived there though. Keep pressing forward, you are her only advocate. And it's true... mommies know things... things about our children that Doctors don't. Our instinct is God-given and shouldn't be discounted!

  7. I feel for you. And I agree with Shan...we are our children's ONLY advocates and we DO have instinct for a reason. Thinking of you...your family is beautiful :)

  8. faith is a blessing as are all your children,yes i think your concerns should be ackwnolaged,as for letting it go, give it to God, ask & listen, he hear's and we here back, you've trusted him so far and from the outside looking in GOD IS NOT ONLY GOOD HE IS GREAT!!thinking and praying for you RRJR

  9. When I read reminded me of what we went through with my mom. In our case...the dr was wrong, and we were right that there was something else going on. I think you have to go with your instinct...and ask God for peace. I think that when there is no peace, there is truth that needs to be sought out.