Monday, May 7, 2012

Confessions of a Hypocritical Mind

Since beginning our life in Amsterdam, I have had many thoughts that have belittled our situation, have been demoralizing, and have been bitter. I am not proud of these thoughts (especially the bitter ones); but they happen, and it's how I proceed that matters. Now, I am speaking for myself and everyone may not agree with my sentiments (which is fine), but if I'm having some of these thoughts then I am sure someone else is as well.

When I first started hearing the term "special needs" my heart sank. I didn't really know what that would mean for Rae and for us. I knew that there were going to be some sacrifices we would all have to make and adjustments in our expectations/dreams. I was advised to seek out support groups because they would understand everything we are feeling or experiencing. They will also be our best cheerleaders, supporters, and guides through the quagmire of paperwork (doctors, insurance, programs, etc..). One would think there would be some comfort in all this, but my mind wondered about how they would perceive Rae's condition in comparison their own child's. Initially, she was ONLY Hypotonic and, at worst, would just have a few developmental delays. How was that special needs? How special was my seemingly short term issue in comparison to a child with Down Syndrome, Cerebral Palsy, or Angleman Syndrome? Wouldn't the other parents think, "Geez...I wish Hypotonia was our only concern." I was convincing myself that Rae's needs weren't that special and were nothing in comparison to other children's so what gives me the right to be so upset (she's my daughter that's what).

That's where the demoralization comes into play. This thought made me feel hopeless and alone. I wasn't allowing myself to feel the enormity of our situation. This nagging, critical voice kept repeating: "It's not that bad. Why are you so depressed? Other parents would be thankful if this was all they had to cope with? You should be grateful it isn't worse. Stop whining!" This dialogue is what I believed other parents would think if I shared my heartache with them. Essentially, I was judging other families (that I've never met) before they could judge me and that wasn't fair to them.  I have meet some wonderful parents that have been nothing but supportive, helpful, encouraging, understanding and, if appropriate, angry with/for me. They aren't judging Rae's situation as greater or less than their own and if they are they never give any indication that they feel that way. I was wrong in thinking that would be the case. While it is good to keep in mind that others may be in a worse situation than my own, I've learned you can't deny that your situation is difficult to cope with because it is YOUR situation.  So, if this thought has crept its way into your mind banish it at once. It will only hinder you from creating relationships with people that will understand your life better than others. But I have a confession...

Since last September, we have learned that Rae doesn't just have Hypotonia. She also has Scoliosis, Epilepsy, and was more recently diagnosed as having Congenital Myopathy (which type we aren't sure...yet). I have a sneaking suspicion that this will not be the last of her diagnoses, but only time will tell. Her progress hasn't gone as quickly as we would have hoped and her "milestones" are more like "inchstones." As a result, I will honestly admit, that the most shameful, hypocritical thought I've had has been just what I feared people would think of me when we first landed in Amsterdam. I, at times, feel slightly irritated by the distressing cries of another parent when their 1 year old isn't walking (according to Dr. Sears an acceptable range is 12 - 16 months). Upon further inquiry, the child is sitting independently, rolling over, getting into crawling position, and gives no indication of any other complications. There is no official diagnosis from a doctor only a parents suspicion combined with information from the internet (medical concerns are a dangerous Google query). It was a horrible thought and I'm going to own that I thought it... I mentally screamed, "Your child is probably fine other than a slight delay. Boy, I wish that were our only concern. Stop Googling because it will only make you more paranoid and you don't need to request invasive procedures (muscle biopsy) right out of the gate."

My mind raced ahead of my censoring ability and before I realized it, the thought was there. It was a fleeting thought that has no merit because no matter the extent of a child's developmental delay that child is still someone's baby. Someone's heartache. Someone's joy. Just as Rae is ours. My occasional bitterness is not supportive. It's alienating. It has no place in this world because we're all just trying to make it to the next "inchstone" and we need each other. I'm sure from time to time these fugacious thoughts will pass through my mind, but as I stated before it's not the thought that matters, it's how I proceed after the thought. I choose to be supportive, encouraging, and helpful.

Friday, May 4, 2012

Four Month Wrap Up

During the last four months it has been one emotional upheaval after another. I feel like I am constantly reminding myself that everyone has something going on in their lives that stresses them out, makes them an emotional mess, or creates havoc. Then I tell myself that even though there is someone out there that may have it worse that does not diminish what I am going through. That is not an easy pill to swallow. I so desperately want to be positive about the wonderful aspects of our life that I try to find ways to make our struggles and heartache seem trivial.

I feel like I am always making excuses when I forget someone's birthday/anniversary, when I don't return a phone call, when a project goes unfinished or takes longer to complete, when I forget to schedule a coffee break with a friend, or when I just seem to drop off the radar, but... Here's some of what has happened in the last four months:

One of Rae's last pics with Papa.
  • In mid January, my Grandfather went into the hospital with a brain bleed. They operated, he never woke up, I was able to say goodbye, but I knew in my heart he had already left us. He passed away the day before my Brother's birthday. I no longer had a Grandfather. He was always right, strong, generous, stubborn and a teddy bear, but not everyone saw that side of him. We were in Indiana for almost three weeks and arrived home just in time for...

  • Rae's first appointment with Genetics (read the post here) in the beginning of February. I met Dr. M and after an extensive examination with a detailed Q&A session more tests were ordered and we waited...we wait alot. I left the appointment feeling apprehensive and guilty (what if I did this to my daughter?). I also left with a bad taste in my mouth and concerns about the curt demeanor of our newest doctor. But, I had other things to occupy my thoughts with like...

  • Her follow-up with Dr. S in Orthopedics at the end of February. When we learned that Rae's scoliosis was getting worse it went from 20 degrees to 28 degrees (read the post here). The prescribed plan of action..."wait and see."

  • Two weeks later (on a Thursday), I found myself going to see Dr. A (our pediatrician) about the tremors (Part 1) Rae was having at the end of her naps. Prior to the appointment, I managed to catch the tremors on video so he could see exactly what we were talking about and then found myself trapped in a whirlwind of testing (Part 2) and another appointment with Dr. H's ARNP, Ms. C, in Neurology (Part 3) the very next day to be told that Rae was epileptic. The first medication (Keppra) made her temperament unbearable (she became such an angry baby I about lost my mind) and she was still having the seizures. Dr. H moved her to Trileptal and we are still trying to determine the correct dosage (we're up to 4ml twice a day) hoping to halt the seizure activity (which we are still seeing, but less often and not as bad as before). Which reminds me that I need to place a call to Neurology today...

    Rae and Gruncle
  • In between all of this, my Great Uncle (Gruncle) was in and out of the hospital (cancer and infections) and we were all wondering what was going to to happen and when we should make a trip to Atlanta to see him. That question was answered when my Mom called and said my Dad was planning on leaving the Friday before Easter and returning the next day. There was no question about whether or not I was going. I packed our bags (mine and Rae's) and we went on a quick road trip (6 hours one way) to say goodbye. Being at my Gruncle's bedside was a very different experience for me because, unlike my Grandfather, my Gruncle was awake (he came in and out). He opened his blue eyes and looked into ours with a deep sadness and pain. It broke my heart and I wept for days. I wanted to erase his pain, make him better, do everything I could to help my family through this...I wasn't ready to loose him and neither were they. He passed the day after Easter. We just barely made it in time to say farewell. He would have been 72 this past Wednesday.

    Trying on a sample pair of frames.
  • The same week our Gruncle passed we had a follow-up with Ophthalmology where Dr. D told me we needed to consider getting glasses for Rae. While this may not seem like a big deal to some I felt like I just got punched in the throat. Yes, I cried a little. Glasses would make her differences obvious. It would make Rae stand out and up until this point her delays were just suspicions people might have, but the glasses would scream out to people that she was different. I know people celebrate their child's difference, but I wasn't ready to do that just yet. I'm getting there. We ordered them and hope to work at getting her to keep them on (and not eat them) sometime next week. They are lavender Miraflex frames (w/o insurance would have cost $350) and I hope it pays off in the long run. Her being able to see properly could help her progress in her development.

  • At the end of April, we had our follow-up with Dr. M in Genetics. For three days leading up to the appointment and the day of the appointment I had a nagging migraine that would not quit. My nervousness could no longer be swept under my mental rug and it was manifesting itself in the form of a 24 hour headache that nothing could kill. Much to my surprise things went smoothly. Every test came back normal and we were told Rae has Congenital Myopathy. Her muscles just don't work properly. We can do more testing to try and determine the specific type, but it may or may not be covered my our insurance. After the appointment my headache was gone and hasn't returned since.

  • Next hurdle...Rae got sick. Something viral, but we initially believed it to be bacterial and she was placed on amoxicillin (a little scary since it was her first time and we have a family history of penicillin allergies) and we had two weeks to get it cleared up before her physical (May 3rd) for her MRI on May 9th. Yesterday, Rae received a clean bill of health at the physical and now we have to keep her in a bubble until next Wednesday. But this wasn't the only news we received yesterday...

  • I made an impromptu appointment with Mr. L at my primary care office (same location as Rae's so it was convenient...I was already there) to check a problem with my throat. I was worried it could be an infection and I didn't want to risk passing it to Rae (I was actually more worried it would be something more serious and didn't want to know). I noticed my throat was a little sore this past Monday and thought it was just sinus issues from pollen and whatnot. By Monday evening I could feel a biggie it's just swollen. On Tuesday it was visible...well that can't be good. Wednesday showed no change and I was trying to just blow it off (denial). I don't have time to be sick and we don't have the money for me to run to the doctor(s)...especially if is serious. My Mom threatened to make the appointment for me (gotta love Mom's) so I checked if there were any openings on Thursday...lucky me they had an opening at 11. I only had to wait around for 40 minutes. I waited. Turns out I have some kind of goiter on my thyroid. If it is soft, then it is fluid and they can drain it easily enough (it involves a needle...ick!). If it is hard...well...(gulp) could/is cancerous. WTH?!?!?! What part of I DON'T have TIME for this #*@% don't YOU get?!?! Yeah, God I'm talking to You! We are in the first week of May and I feel like my family has already been on one giant, freaking, crazy, emotional, mind screw and You wanna toss this into the mix? Sure, I know He didn't do this, but I feel I have the right to be a little peeved...let's be honest we all yell at Him (or whoever you believe in) at some point. So, I had more blood work done and went for an ultrasound this morning, but we have to wait until Monday for results...

So, we now find ourselves at the beginning of the fifth month of 2012 and I already feel like my emotional savings account has been emptied and I'm running on a combination of fumes and credit. Some days I don't know how much more we can handle, but I know no matter what we will get through this somehow...