When You're a Special Needs Mom Who Had Special Needs

I am exhausted.

I say this throughout the day because there is no other way to explain how I feel and even that doesn't do it any justice. Most will think that my exhaustion is related to my busy schedule and physical demands placed on me by Evie. Yes, that is part of it, but there is so much more going on. My body has been attacking me since the birth of my daughter (2010). When I need it the most, it is in a state of rebellion and each battle destroys a little bit more of my defenses.

First, it was my thyroid. No matter what test was administered it always showed that it was functioning perfectly. But it was also growing. A lot. Like two and a half times normal size for a total weight of 75 grams when they removed it. I almost lost my voice. It has taken years for my vocal chords to recover and even now they are not at full strength. That is what hurt the most. My ability to sing songs to my daughter ceased to be because it hurt. So I hummed. Not the same though.

Losing my thyroid required that I start a daily regimen of synthetic thyroid hormone pills. Great! I'll die if I don't have them. Awesome! Who doesn't love being bound to medication for the rest of your life. But I take them. Then the exhaustion set in. Falling asleep at a stop light is not my idea of optimal balance.  It took over a year of constantly saying I still didn't feel right and was too tired before anyone actually listened. My first doctor suggested my extreme fatigue was due to our special needs life. Um...No. That is not an acceptable answer. I found a new doctor. A change in medication (from synthetic to a natural desiccated thyroid) and I started to feel better for a quite awhile. And then I didn't. (seriously, it all becomes a blur)

The fatigue returned. My body just felt weak and tired all the time. I started feeling heart flutters/palpitations. My limbs felt heavy after 20 minutes of exercise. Just everyday simple tasks would leave me out of breath. I thought my thyroid medication was not longer working. I repeatedly mentioned it to my doctor and nothing changed. No additional tests were ordered. I carried on.

The fatigue really started being a problem again after I underwent emergency surgery in 2015. Afterwards, a post op infection basically placed me on bed rest for 4-6 week which was interesting to manage and could not have been done without help from my family and Evie's teachers.

Many parents will tell you that they will lose track of their own health needs because they are overwhelmed by the needs of their child(ren). I was no different. I'm so over going to doctors with Evie that I just don't have the energy to do for myself. I also know that when I go they will want to do something (tests) or send me somewhere else (specialist or therapy) and I seriously don't have time for all that. So, this mystery condition just went unchecked despite my bi-annual appointments with my endocrinologist.

I finally decided I needed to find out what was wrong. I thought I was going to have a freaking heart attack or something. I made an appointment for a physical with my primary care. I gave my blood. They ran their tests. Then I was told I am anemic (iron deficiency anemia). Not just a little. A lot. I have to take iron pills every day and more blood work is in my near future. Lots and lots of blood work.

But I wasn't going to cave into this new condition. I told my doctor I am training for a half marathon and would I be able to run. She said it would be best if I didn't until we determined what was causing my anemia and my levels were back up. Naturally, I ignored her. I am SUPERWOMAN! A little low iron (14...should be about 40 at its lowest) and low red blood count (8.1...should be between 12-15) wasn't going to stop me. Did I mention I'm stubborn and hardheaded?

I completed a 5k while pushing 80+ pounds (Evie and a jogging stroller). The course included a bridge and a 5 or 6 story spiral ramp. (I don't run the entire course. I do intervals of walk/run.) I couldn't breath after I crossed the finish line. I was gasping for air like a fish out of water. I am NOT superwoman. I am a special needs mom who now has special needs of her own. I don't know what this may mean for us in the long run. My body's betrayal has wounded me. When I need my body the most and my life demands more from it than ever before, it has decided to fail me. Repeatedly.

Admitting that I can no longer keep up the pace I have been forcing myself to live is difficult. I may have to drop out of my half marathon. I may have to start taking naps more frequently. I may have to get transfusions. It is not just as simple as eating more spinach and popping an iron pill. If only (sigh). What I do know is I may not be superwoman, but I am going to continue living like I am and not let these physical setbacks stop me from being the best I am able to be. Right after I take a quick nap.

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 lump...no 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)...it 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...