Monday, September 30, 2013

Don't Be Sorry For Me--I am Blessed

 Click here if you missed Redefining Perfect Part 1 and Part 2.


We sat in neurologist's office and the doctor walked in.  Very nice man, very tall actually; he was to the point and didn't sugar coat a thing.  God bless him for that.  He picked her up, she smiled at him.  She's such a social, happy little thing.  He turned her this way and that, looked her over from head to toe.  He asked some questions while he was holding her, one of those questions being about blood clotting.  At first I said, no, there's no history of blood clotting.  And then it hit me.  I remembered the nurses pushing on my stomach after labor.  It hurt terribly.  I was passing some large blood clots.  Why didn't it seem like a big deal until now?  I guess that minor detail paled in comparison to the NICU nurse coming down to work on Addyson.  I interrupted him and replayed the hour or so after birth, including the blood clotting and her seemingly difficulty breathing at birth.  He handed her back to me and looked at us and just said, "I'm afraid that there has been some brain damage."  The flood gates opened.  I sobbed.  I was waiting for him to tell me that there wasn't anything wrong with her, even though I knew that wasn't true.  But he didn't.  Brain damage. 


He went on to tell us that it was likely that somewhere between 25 and 30 weeks along in my pregnancy, my placenta must have torn.  It caused her to lose oxygen to her brain and caused some damage.  My mind immediately went to that moment at school when I was 30 weeks pregnant.  When I lost vision, my face went numb, when I knew something wasn't right.  No one can confirm what really happened that day.  I guess I could go have an MRI and they could look to see if there is evidence that I had a mini-stroke.  But honestly, it wouldn't change a thing.  In my mind, that will always be the day it happened, no matter what anyone tells me.  Of course my mind started racing, wondering what I could have done to cause my placenta to tear.  I worked out quite a bit during my pregnancy, I drank some soda, I played with my rough and tumble two year old.  I have to admit, this doctor is very good at his job.  He must have seen the look in my eyes, because right then, he looked at me and told me "There's nothing you did or could have done to cause this.  It's not your fault."  I needed to hear that, I mean REALLY NEEDED to hear that.  Hearing the doctor tell me that it wasn't my fault saved has saved me so many unneeded tears.

He point blank said she likely wouldn't learn to sit up at 6 months old, and that she probably wouldn't be walking at 12 months old.  He let us know that the anisocoria is related to the brain damage, but she should have functional vision.  He said he was hopeful that the extent of the brain damage doesn't affect her cognitively. She's already very social and happy. We just don't know yet.  We talked about ECI, about private therapy, about botox, muscle relaxers, insurance, a social worker, pre-authorization, MRI's... it went on and on.  Too much to process. 

Toward the end of our visit, I asked him, "Does this mean she has Cerebral Palsy?" He sort of hemmed and hawed over the question. Yes, but no. He prefers a specific diagnosis where as CP covers such a wide range of disability. Now, for the life of me, do I remember what he called Addyson's medical diagnosis? Of course not--it's some long name that means nothing to me or 98% of the rest of the non-medical community. Now, once we have the MRI and everything is confirmed, then yes, I will commit myself to learn it. But not right now. Right now I know that my daughter is wonderful. She is beautiful. She may not learn to sit up at 6 months old. She may not be walking at 12 months old. She may have some issues with using her hands. She may have learning difficulties. But then again, she may not. We just don't know. We have to take one day at a time. All I am sure of is that she is God's gift to my family, and quite honestly, to anyone else who gets to be in her life.


The part of our appointment that really got me was when he brought up the divorce rate for couples of children with special needs.  He quoted it at about 90%.  He said that the research shows that the most determining factor wasn't a certain faith background, wasn't counseling, or anything like that.  It was attending the appointments together.  He said that when one parent is the primary caregiver, that there's a lot of resentment and burnout.  I have to say, our marriage has been through the fire.  You name it, we've probably gone through it.  But we do have a strong faith base.  And my husband is amazing with Addyson.  He's on top of all the therapy and has such a tender heart for her.  He's happy to help with the appointments and whatever we have to do to get Addyson what she needs.  We are both all-in.  I just want to take this moment to thank God for everything; every trial, every heartache up till now, because it was all worth it to know that nothing is going to break us.  I simply can not imagine walking this road without him by my side.  I know God has some grandeur plan--I just can't wait to see it all in the end.

I have to admit, I get a little feisty when it comes to her.  Defensive even.  I know I am overly-sensitive about her.  So, I apologize for my reactions if you offer me "pity."  I may not react the right way if you say "you're praying for me."  Don't get me wrong, I appreciate the prayers, just maybe not in the way you might think.  I guess I just want people to know that we aren't sitting here devastated.  In fact, it makes me a little angry to think that people might think that we are wallowing.  I can't explain it--just don't be sorry for me.  I am blessed.  To quote a beloved song, "It is well with my soul."  I am okay with this.  She's going to be tough, just like me.  She's going to work harder than a lot of kids, she is already at this young age, but I have faith that God is going to do great things in her life.  The prayers I do covet are the ones for the stress it may put on my family.  There's a lot of therapy.  I am so thankful that my husband is a firefighter.  He's home every 48 hours, and gone 24 hours, so he's able to participate in a lot.  I'm jealous of that to be honest.  I love being a working mom, and I get to be there for a majority of things, but it's hard being pulled in different directions.  Pray for peace--we do have to take this one day at a time.  The first time she grabs for a toy, rolling over, first words, sitting up, crawling, walking--these are all things that Addyson will likely have to work harder at.  Pray that I remember to enjoy her infancy, not to rush her, and to cast all my worries on God.  Pray for my sweet son, just 3 years old.  A lot of attention is being put on Addyson right now.  More than what's typical of a new baby sibling.  Pray for Addyson--that she gets to be "just Addyson."  More than anything, I don't want this to define her.  And I don't want it to define my view, or my family's view of her. 




I am so thankful that we had a knowledgeable pediatrician who identified the issues early on.  The neurologist admitted that most the time, he doesn't see kids Addyson's age.  They come in at 9 months old when they aren't sitting up, or at 15 months when they aren't crawling or walking yet.  Since we know so early, we have such greater opportunity to use therapy to help her meet her developmental milestones.  Praise God for how extraordinarily He has orchestrated all of this: the timeframe, my amazing job and the people I work with, my husband's schedule, the family support we have.  Just everything.  Praise God. 

I can't wait to share Addyson's triumphs with you.  She's already making amazing progress with her therapy!  I plan to make this a weekly/bi-weekly journal for my family.  I do not intend to abandon my freezer cooking segments.  Just be patient with me--you can see I've got a lot going on!  My family sincerely appreciates the support of my e-book, Time and Money Saving Freezer Meals.




5 comments:

  1. What a sweetie she is...even in pictures her social little being shines through. And, yes, my friend, you are blessed to be right where you are at this time in yours and Addyson's life because it is exactly where God has put you. I look forward to sharing in all of the victories with you down through the years of this precious child's life.

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  2. I so enjoy hearing about your family and the sweetest new addition to it. I won't tell you I'm praying for you - I'll just say this....in moments that might be scary or hard to hear, remember to breath. And always remember what that very smart fish, Dory always says....just keep swimming. :) Enjoy your family...

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  3. I wanted to reach out to you. My oldest son is 19 with learning issues. You will have your good days and you will have your bad. His father and I are still together, (27 years) and the all haven't been easy but it's been worth it. You both will protect your daughter like no one else! Trust your self and love her. You are everything to her....

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  4. Both my daughter and I have anisocoria. that was my first thought reading this. I can understand the defiance/feistiness as well. I went through it when told that our son was on the autism spectrum. True. He is, but we always knew there was something a little different about him and we embraced that as a part of who he is. The idea that a diagnosis should change what we already have is ridiculous.

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  5. She is so precious. I don't know what it's like to have a child with learning issues but I do feel for you. I am a teacher too and have worked with children with mild issues. My best advice would be to look at every moment as precious, let Addyson be Addyson and not be defined by everything she is dealing with and celebrate each and every milestone, no matter when it comes. Thank you also for being real with everyone about just what it is like to deal with all of this.

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So glad you stopped by! I'd love to hear your thoughts!

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