Tuesday, December 6, 2011

My Sweet Boy

Let me start by telling you how the day began... because seriously - if I didn't live it - I wouldn't have believed it either. We currently are on an HMO insurance plan, so we deal with the referral system - it's a small inconvenience for a good amount of savings on our part. When our pediatrician recommended us going to the neurologist with James - they did the insurance paperwork online and gave us 8 visits. They told me about it, and said that the neurologist's office should be able to pull the information they needed without a problem. I called their office to verify this information and was told that I needed to have it faxed over. Okay, fine, whatever. Called and asked that it be taken care of.


Fast forward to arriving at the office. Well, the paperwork hadn't been faxed. Then the receptionist said the words I will never forget - because it's freaking 2011! She literally said to me - we don't do anything online. Really? A doctor's office in 2011 doesn't use the internet to make their lives easier? Did I move to a black hole? I got the pediatrician's office back on the phone and explained that the neurologist's office doesn't know how to get the information online - please fax it over. They faxed some information, but it didn't have the insurance approval's information on it - so I had to literally call Aetna and get their information for them. You know, because I wasn't sitting there for an HOUR dealing with this while my 20 month old is waiting. No big deal right, because he has all the patience in the world.

During that entire time - they only called ONE patient back to be seen.

About an hour later, we were in a room waiting to be seen. The whole process made me uneasy to this point, but within a matter of minutes the pediatrician's suspicions were confirmed and we were diagnosed with a neurological disorder.

I don't want to go into the details of what it is - it is NOT life threatening - because John and I have firmly agreed that we will go to great lengths to make sure that James isn't labeled by something that isn't necessary. Right now, he is perfectly normal - developing right on schedule. This disorder may or may not ever cause him any problems - there are no guarantees - but it certainly isn't the worst thing in the world to be diagnosed with. We will be monitoring him every year... and will learn more when we meet with our geneticist in April. Until then, we will get him an MRI so that the doctors have a baseline to refer to each year to make sure things haven't changed.

I took the day yesterday to be sad and weepy for my sweet, baby boy. I had to remain strong in front of him, but when I put them to bed last night - I fell apart for a bit. I've got so many reasons for why this happened... but it boils down to a couple of bigger points for me:

1) I worked so hard for these boys - and was incredibly blessed to have them in such a miraculous turn of events... but with all of that heart ache and waiting - you'd think that something would go easily. NO LECTURES please. I once again find myself very frustrated and upset with God. I had this happen when we stopped fertility treatments - and I firmly believe that it's okay to go through being mad from time to time. I don't hide from it - God is big, and he can handle it... so I let him know that I'm angry and pray that he works on me to help me come to terms with it. He's done it before - he'll do it this time too. The reason I say that is because I want people to know that I believe it's okay to be mad at God - there is a difference between being mad and turning away from him.

2) Every once in a while, life slaps me in the face - and I'm totally not ready for it. I still feel like a kid a good amount of the time. Like I'm a little kid playing house or something - but then things happen that make me snap back into reality and understand that I'm the responsible adult in this situation. Which scares the hell out of me, frankly. I'm the one that will be making the decisions about his care, and will be one of the only two people that care enough to keep up with it completely. Lets face it, doctors make mistakes - and you HAVE to be your own advocate... it is completely up to you to make sure that things get done. That is overwhelming at times.

3) It is scary to know of the possibilities. To know that there are things that could happen to my precious boy... it's different than not knowing - and you sort of have to mourn that for a minute. The reality is that something could happen to Tyler at some point as well, but we'll never know until it happens. Now, with James though - we'll wonder and worry with each strange occurrence. Or at least it feels like that right now. I can honestly admit that I don't understand this disorder right now - and the little bit of googling I did - proved to be the WRONG move for me. I don't want to know all of the possibilities. I just want to know the right now.

Ultimately, our family is unique - like every family is... but for us - we don't have complete family medical history for either of our children. We won't for any future children either. We don't have it for James because his birth father didn't participate in the adoption process - and his birth mother blocked most of his information out for whatever reason. For Tyler, we don't have it because John doesn't have any medical information on his birth parents. So, when a wonky genetic disorder comes up - we're in uncharted territory.

That's where we are. For today, my sweet baby boy - who I love more than I ever knew possible - has a diagnosis and that's it. There is nothing more to it. We follow everything and make sure that we stay on top of it - but that's all we can do.
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8 comments:

  1. I'm praying for you!!! It's sooo hard when it comes to your kids. Emotions are all over the place--big hugs!!

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  2. When Jackson was around the same age as James, we found out the he had a mild form of epilepsy. He had a few seizures at mother's day out, we never saw them, and we were off to the neurologist. We even got to do a sleep deprived EEG, not fun for anyone. He was diagnosed, medicated, and went to the neurologist twice a year for 3 1/2 years.
    My point is, I know how it feels to have to see a specialist for your child. I know how scary it is when they receive a diagnosis and how overwhelming it can be as a parent. We were lucky enough to find a wonderful pediatric neurologist in Plano who we drove to see every 6 months or more when needed. If you don't like this neurologist and are able to use a different one, then please do. This isn't someone you will only see once, and you want to feel comfortable with them and their care. I'm sure that James will be fine, but I'm praying for him and for you all. I know this is a scary time, but you will all be fine and God will get you through. There is nothing wrong with being mad at God, He and I have had our tiffs before, but I know He always has my back even when I'm mad at Him.

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  3. You are doing everything right. YOU ARE DOING EVERYTHING RIGHT.

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  4. Couldn't agree more with Wyndie or Pam. Just know we are all thinking of James and your family, especially you. You're allowed to be angry, its how we cope and he understands. Hugs!!

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  5. I second Pam. I say that because 1) you recognize your weaknesses and trust God to handle them for you and 2) you know you are are capable enough to be the caregiver and decision-maker that you need to be for your baby boys.

    Are you starting to see now how the long road to parenthood, and even your own health concerns over the years has really prepared you for this? God knew he was going to give you these boys from before you were even born, sweet friend, and He's been busy preparing you to be the amazing mom that you are today. It's all coming full circle and He's right there with you. Even your non-confrontational ways are subsiding as you have to stand up for your boys...it's really amazing to see how God has equipped for you motherhood. :)

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  6. "I believe it's okay to be mad at God - there is a difference between being mad and turning away from him" juts hit my like a ton of bricks. thank you thank you thank you for putting into words what i've been struggling with for the last 2 days. because i AM mad at God. but having someone else say it's okay does me a world of good.

    thinking good thoughts for your sweet boys!

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  7. Praying for you. I know how hard it can be.

    Oh, and as for not being angry at God or being angry at God, anger IS a part of the grief process. I ti NOT normal to not be angry - being angry is normal! And it is okay to be mad at God. Like you said, he can take it. Plus, not acknowledging it doesn't mean it doesn't exist. (He knows it is there even if you don't express it).

    Now, on the bright side. I know the WORLD'S BEST pediatric neurologist in Memphis. He is the doc we originally saw here in Houston before he moved. Love, love, love him, so I will pass on the info if you decide to see someone else.

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  8. I'm so glad that you are at a place where you know it's okay to be angry. God's big. He can take it. That's a healthy place to be.

    Praying you find the right words to tell his birth mom and that He works in you through what you're dealing with.

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