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.

FundRazr: Rae's Medical Fund

This posting is about the account I set up through FundRazr. A link to Rae's account is below. If you're a regular reader then you're already familiar with our story. If you're new, here's a quick summary of events and I hope you return.

Rae's Medical Fund:

In our home, we don't look for developmental milestones. We look for the inches, like the first time our daughter, Rae, held her own bottle at 14 months. Now at 22 months, Rae looks like a typical toddler on the outside, but she doesn't toddle or even crawl. She does not "baby talk" and is currently not able to communicate using sign language (read about it here or here), but she does give a pretty good "High-5" (watch the video here). 

Here's our story...

Our medical journey began when she about five months and we were told Rae had Hypotonia (a fancy word for low muscle tone). After that, our world became a blur of doctor appointments and testing. By August 2011, she was diagnosed with Scoliosis, likely caused by her Hypotonia. In September, Rae had her first MRI with "normal" results and then proceeded with a Nerve Conduction Test...also "normal." She was accepted into an intervention program and started receiving physical therapy once a week and we were hopeful, but then the word wheelchair came up and we knew there was not going to be a "quick fix."

In November, we had lab work completed to determine if Spinal Muscular Atrophy was the culprit of all Rae's medical concerns (which came with a whopping bill...still unpaid). Then the "tremors" started concerning us and we ended up back at the hospital for an EEG. Diagnosis...Epilepsy. Now it was time to start the grueling process of figuring out which medication or combo of medications would stop the seizures. This also meant we were going in for a second MRI. We then went to Genetics (read about it here) to see if there was something they could find and so far (thankfully) everything is "normal" and sometimes that can be a bittersweet result. We are now waiting on some Mitochondrial test results which won't be back until Oct.

It has been heartbreaking and the medical expenses just keep piling up (some caused by my own recent unexpected surgery). Our little Rae of sunshine is special needs. I don't think anything in life prepares a person for that realization. Every time we think we have the bills and our emotions under control, another rug gets tugged and we're falling to the floor...again.

Our official diagnoses as of July 9th are: Hypotonia (read about it here), Myopathy, Global Developmental Delay, Epilepsy (read about it here), Scoliosis (read about it here), and Nearsightedness (she looks cute in glasses). Fortunately, those little inches keep adding up and now, at 22 months, Rae can sit independently for over 30 seconds, lift her head while on her tummy, and can finally bare some weight on her arms (just a bit). These are impressive developments in our home and this is just the beginning.

I kept holding onto the belief that we would be able to manage this on our own and recently came to the conclusion that we needed help. Since the account was opened, we have gratefully and thankfully received $550 towards Rae's medical bills. Some given through FundRazr and some given to us directly. Words can not express the gratitude we feel towards those that have so generously given. Thank you!

My Love Hate Relationship with Rae's Corner Chair

I love Rae's corner chair!

Rae sitting with support from
Her sandbags. See how she is
tilting her head back.

It enables her to sit up straight. She is not able to lean into her "C" curve caused by Scoliosis. There is a tray from which she can eat or play with toys (most of which end up on the floor). It's on wheels so it can go anywhere in our home. It was loaned to us by our PT (which saved us from buying one to the tune of $500). When she sits in it, she is at the right height to watch her favorite cartoons (Curious George, Cat in the Hat, & Sid the Science Kid...basically anything on PBS) and doesn't have to tilt her head back to see. All in all, it helps her gain more strength in her trunk which will further her development.

But...here's the problem...

I HATE's Rae's corner chair!!!

I know, I know...after all those wonderful reasons to love the corner chair I still HATE it! I hate putting Rae into the bulky contraption. I hate that it is the only piece of special needs equipment we currently have in our home. Almost every time I look at it sitting in the corner of our living room I suppress the urge to toss it out into the yard or weep. I see that chair and I see how different our life is from what we hoped it would be. I HATE that chair for purely emotional reasons....logic be damned!

Rae sitting in her Baby Snug watching
PBS & rocking her glasses.

For months no one even knew that we had a corner chair because I silently refused to photograph Rae sitting in the dang thing (heck, I didn't even want to sit her in the chair and found every possible excuse not to). When I did start taking pictures, I refused to post them anywhere. I was in denial. If no one else see's it then it doesn't really exist. I pushed the chair into the farthest corner of our living room just so I don't see it when I look around the room. I become so frustrated strapping her into the chair because it's like fighting an octopus...she wants to eat the straps and mean ol' Mommy wants her to leave them alone (her arms, though weak, are very quick). This battle alone can motivate me to raise a white flag and/or reduce me to tears. I scoured the internet for other options (I bought a Mamas &Papas Baby Snug) that were more palatable to my tattered emotions. All for what??? A false sense of normalcy...that's what!

Now, here's where I become a mature, do what's best for your child, parent.

Rae with our PT playing with playdoh.

I put Rae in her corner chair. No matter how I feel about it on any particular day, I know it is what is best for her. I wish I could say I was more consistent and I sit her in the corner chair every day, but I don't. At least I'm trying and that's the best I can do. Sometimes that's the best any of us can do...just simply try. The corner chair is OUR normal and I am finally finding some peace with that.

Rae sitting pretty in her corner chair.

The Plan

When I was about 8 years old, I remember going into the woods behind my house and digging in a giant dirt mound. I imagined that orangey, clay like mound was an archeological dig site (it was actually dirt from a retention pond they made for a new subdivision) and I was on the verge of discovering something of great scientific significance. I thought to myself, "Wouldn't it be cool to be an archeologist and help rediscover the past?" I'm not really sure why that particular occupation was the front runner for an eight year old, but I'm pretty sure it had something to do with the giant stacks of National Geographic magazines my Dad had in our living room. Secretly that became my "plan."

I'm still doing photography,
just less of it than I did before.

Well, my "plan" changed and by the time I was about 14 years old I told my Grandmother that I wanted to become a photographer. My inner self wanted to travel the world, with no attachments, have wild adventures, and capture the world through my own point of view. The ultimate "plan" at that time was being published in National Geographic magazine. My Grandmother's reply to my chosen occupation, "Well, that doesn't sound to stable and they don't make much money." She grew up during the Great Depression and stability was everything to her. So, I nodded my head in agreement and said, "Maybe I'll become a physical therapist." (I liked helping people) My Grandmother smiled and thought that sounded like a great "plan." Truth be told...I HATE science!

Fast forward a few more years (past high school) and life has now gotten in the way, my "plan" of becoming a photographer was almost completely squashed for many reasons (one being a very unsupportive photography teacher that only showed interest in jocks and pretty girls), and I found myself running on the hamster wheel. My "wants" and insecurities overpowered my "plan." So, I caved, enrolled myself in college for a business degree and believed I was destined to become another corporate lackey. My "plan" changed once again. I HATED business! (primarily because of all the math)

Skip ahead two more years and I changed my "plan" again. Now I was diligently working towards a degree in History (kinda close to archeology...sorta). I worked, studied, read A LOT, wrote A LOT MORE, and managed to complete my BA in History with a minor in English Literature. I thought I'd get my Masters and teach at the junior college level someday. Education doesn't pay and I had bills...LOTS of bills. During all this time, I was on again and off again employed. I chalk it up to my restlessness because nothing I was doing was what my heart and soul were telling me to do. So, I made another adjustment to my "plan."

The proud college graduate!

Before I finished my degree (by the time I was 27), I was married, we were looking at buying our first home, and trying to conceive Rae. When the pregnancy test showed positive we had to work on a new "plan." I would return to work sometime after Rae was born. She would be enrolled in a good daycare and everything would be perfect. We'd build a garage for my husband's '53 Ford and I'd get a small studio space in our attached garage to work on my projects (I have never entirely given up the photography "plan"). The "plan" was perfect. We could do this!

Eighteen months after the birth of our daughter and I can honestly say, "We have NO plan!" Every day we are working towards the next day. Not a year from now. Not six months from now. Not even one month from now. We planned our life around the idea that there wouldn't be any major kinks in the "plan." Well, we had a kink...Rae has special needs. So, my "plan" has changed once again...it's a blank slate.

I still have a sketchy idea of a "plan" and it is usually prefaced with many "if's." IF Rae doesn't walk. IF Rae has to have a wheel chair. IF she has another seizure. IF the doctors can actually diagnosis her. IF we can find some assistance. IF...IF...IF...IF

What I can definitely "plan" for are more days like today... Taking a break to spend the afternoon with my best friend Olivia (Rae's honorary Aunt) & her son Oliver (Rae's boyfriend). Watching as Rae takes her first swim of the year and with gentle splashes in the water (a newly developed pleasure). Smiling as the water hits her cheeks and laughing at her own silliness. She had a great afternoon swimming, playing with Lily the cat (see video), eating Cheetos (yup, you read that right), and watching Dinosaur Train. I also "plan" to enjoy the present and try my hardest not to worry about the next kink in our "plan" that may or may not change our course.

"The best laid plans of mice and men often go astray."

Robert Burns

Living in Amsterdam

I'm going to ask you to please read Welcome to Holland by Emily Perl Kingsley, before continuing. This is not going to be a long post because the next few links will say it all and nothing I can say sums it up better than Dana Nieder (uncommonfeedback@gmail.com*), the author of Uncommon Sense.

Tonight I stumbled upon one of her blog postings titled Amsterdam International, thanks to a Facebook friend, where she offers a more in depth description of starting a new unexpected life in Holland. She shares how just getting out of the airport is an emotional maze for new ex-pats finding themselves stuck in Amsterdam. If you read Welcome to Holland, written in 1987, the writer focuses on the beautiful ending, but glazes over the middle of the trip. Dana fills in the blanks. Sure, it may come across a little harsh, but her honesty is refreshing. She doesn't try to sugar coat the emotional turmoil and guilt felt by these parents, myself included, and by sharing her own experiences she tells us that it is okay to feel these emotions.

Since starting my own journey about a year ago, it has been a series of ups and downs. There have been times where I felt that my own acceptance of Rae's condition was close and then...WHAM! Something else popped up and we (read "I") have to virtually start over. Dana's words are a source of encouragement. She reassures us that there is an exit from this airport and once we manage to make our way through the doors (with all our baggage) we'll be able to see the tulips and windmills. Sure, it's not Italy, but Holland's not too bad once you make it out of Amsterdam International.

*Dana has encouraged readers to repost and share "Amsterdam International" and all she asks in return is that she is cited and her email is offered in case anyone would like to reach out to her. 

Hypotonia: Part Two: Causes & Effects

Causes

Never underestimate the passion of a parent looking for the cause of their child's medical concern. I constantly feel like I'm on CSI trying to discover who the bad guy is and all I have to work with are mixed up alibis and a hunch. Sure Down Syndrome is a suspect, but he was having dinner with Cerebral Palsy. Back to the drawing board! With each specialist, x-ray, MRI, CT Scan, EEG, NVC (nerve conduction), blood draw, and examination another clue is uncovered (we hope) or we realize that the suspect of the week is innocent and we are back to square one. Unfortunately, Hypotonia is generally seen as a symptom and usually not a stand alone diagnosis so there are hundreds of things (our Neurologist's words) that can be ruled out or in, depending on your point of view.
The John Hopkins Hypotonia Center offers an incomplete short list of 56 different known causes of Hypotonia with suspects like:

• Down Syndrome
• Cerebral Palsy
• Autism 
• Muscular Dystrophies
• Prader-Willi Syndrome
• Pompe Disease - Rae just had this test done and we are awaiting results.
• Congenital Myopathies
• Spinal Muscular Antropies - two different types
• Benign Congenital Hypotonia (BCH) - From my understanding it's usually given when there is no other explanation.

With so many suspects to run down it is easy to see how new clues presented by another specialist can play havoc with my case against a different bad guy. How long do we continue the search? Yes, I would like to know what is causing her Hypotonia and hope that there is something that can be done. No, I don't like the idea of her being a human guinea pig with all the different tests. At some point enough will be enough and we will eventually end the search for a diagnosis (just being honest here). It just feels hopeless at times. Especially when a new suspect is tossed into paddy wagon with a rap sheet that includes heart murmurs, enlarged hearts and tongues, and a high fatality rate (Pompe Disease). That is exactly what every parents wants to hear. But, I digress...

Basically, the causes of Hypotonia range from severe to mild and everything in between. There is no easy answer, no magic cure, and no turning back. We all have to chase down the a suspect, gather evidence, and determine if he's guilty or not. It's a long, grueling, emotional investigation.

Effects

The other day I was asked by the geneticist, "What caused you to suspect that something was wrong and when?" I stammered a little during my response because initially I started to have that Gut Feeling close to 4 months of age, but didn't really pursue the issue until almost 5 months. Rae didn't roll over. Seems harmless enough...right? Well, it wasn't. Rolling over is important...very important. Now, 11 months later I realize how important rolling over actually is in a babies development. This is one of the few ways that Hypotonia effects infants and it's a pretty mild bump in a pot hole riddled road.

Here's a short list of complications and delays caused by Hypotonia:

• Rolling over, sitting, crawling, walking, running, waving, clapping
• Speech Delays - communication can become problematic
• Limp limbs that hang down at their sides - Rae doesn't hold on when being held
• Inability to gain proper head control - "Floppy Baby Syndrome"
• Difficulty sucking, chewing, and swallowing
• Constipation - it's all about muscle control
• Respiratory issues/Shallow breathing
• Postural issues - Rae has a "C" curve in her lower spine (infantile scoliosis)
• Joint laxity - dislocations are a greater risk for Hypotonic children
• Poor reflexes
• Slack jaw - the mouth tends to hang open
• Emotional melt downs...mine not hers.

Like many other medical conditions Hypotonia can have a wide range of application. Some children are more severely impacted by low muscle tone, while others are less so. In Rae's case, her arms are weaker than her legs and her trunk's (abdominal area) ability is somewhere in between. She doesn't like to put weight on her arms which is why laying on her tummy and rolling over have been difficult to master and can lead to cries of frustration. Sitting up unassisted is still a work in progress and every time she has a growth spurt she regresses. Her head control has increased, but due to its spastic instability we are are still waiting to put a Wee Ride Kangaroo seat on my bike. Even the most simplest of tasks like sucking a bottle or waving bye bye (we're still working on this one) have been difficult for Rae to master. Basically, Rae's muscles are loose and go from tense to relaxed in the blink of an eye with no warning.

There is no parenting book that can tell you what to expect and the best advice and support I have found is on an iVillage Hypotonic Support Group and the Facebook group called Hypotonic Parent Connection. We are all doing the best we can to encourage the development and happiness of our children and each other. I hope this posting helps better explain the, often chaotic, search for a cause and effects of Hypotonia.

In case anyone is wondering...it's not all work and no play.

The Ostrich Egg

If your a fan of cooking shows like Top Chef or Iron Chef then you've probably seen an Ostrich egg make an appearance from time to time. This egg is the Grandaddy of all eggs. It is HUGE! The average Ostrich egg is almost 6 inches long, 5 inches wide, and weighs in around 3 pounds! The chefs on these shows usually attack this culinary delight with gusto and a hacksaw. No cracking this baby on the top of your counter.  In order to get to that golden goodness locked inside they have to saw their way through the protective shell. So, at this point you're probably asking what this has to do with being a parent of a child with Special Needs...

I need this to develop a a secure, hard, difficult to crack shell around myself. Not to keep people away, but to keep some of the things they say from penetrating my defenses and puncturing the core of my emotions. When everything first started developing (or not depending on how you look at it) with Rae's condition I was so vulnerable to everyone's seemingly harmless words and phrases. I didn't want to be around some people because inside I knew they'd open their mouth and eat their own foot with gusto. Not even realizing that they did it...you'd think they'd their own taste toe jam, but apparently it has no flavor.

Initially things like, "What's wrong with her?" would illicit an emotional eruption inside that would rival Mt. St. Helens and I was almost ready to burn the friendship bridge. Fortunately, over the last few months I've gotten better at controlling those initial responses, but every once in awhile someone still manages to find the chink in my armor. Phrases like: "She'll grow out of it," stated very matter of factly like they are some medical expert when it comes to Hypotonia sends shock waves throughout my body. I manage to choke back any retort that comes to mind, which is usually a very snide sounding, "No, she won't because it doesn't work that way and thank you for reminding me of that little fact." My other personal favorite: "You're lucky she stays where you put her. I have a hard time keeping up with Baby Doe." That one still gets past my guard because what I dream about more than anything in the world is having to chase our daughter around the house. I long for the days that I can't "keep up with her." They can't arrive fast enough.From time to time we also hear the excited exclamations, "Oh, she's getting so big. I bet she'll be walking soon and you'll be chasing her down!" To which my mind screams, "No she won't. We're hoping that maybe she'll walk by two." That one always manages to hit my heart and leaves a burning sensation that lingers for a few minutes.

By working on my Ostrich shell, so much better than chinky armor, I've been able to start nodding in silence with a slight smile and letting them speak their piece. Most people that are aware of Rae's condition don't fully understand it and aren't really sure what to say. So, they generally say whatever makes them feel better not realizing that it sometimes hurts me. Others who are aware seem hesitant to ask questions, probably out of a fear that they'll upset me, so they say generic things that by default sting a little as well. In an effort to not make the situation any more uncomfortable for either party, I have diligently constructed my shell (still working out some of the kinks) and smile without any real comment. Is it honest? No, not really. Is it fair? Nope, life never is. Is it a livable compromise? Yes, but it requires work.

You have to be willing to understand and accept that they don't mean to hurt you and are truly wishing the best. They say what makes them feel comfortable and what they hope makes you feel supported. It is awkward for everyone and a snide or negative retort on my part will only make that worse.

I'm going to leave this with a bit of advice for those out there who have friends or family with Special Needs children.

1. Don't be afraid to ask questions. Sometimes having a better understanding of the need will make your relationship stronger and enable you to support those people more effectively.
2. Listen. For the love of everything you hold dear...LISTEN! If you ask a question be willing to hear the offered answer. On occasion, when trying to explain Rae's Hypotonia, "She'll grow out of it," comes flying out of someone's mouth and I know that it is a futile effort to say anymore at that point.

So, here's to the Ostrich Egg and the new sense of security I feel in having it's protective shell encasing my vulnerability.

A Cat-astrophe!

Some relationships that develop while learning how to navigate in the world special needs will become significantly more personal than others. You may not feel as close to your child's Ophthalmologist as you do their Neurologist. I think it would depend on how often you see that particular specialist. In my case, I have become very attached to Rae's physical therapist. We met Anna through Early Steps and while I was nervous about having a new person come into our home every week that apprehension quickly faded away. Now I look forward to hearing the buzz of our doorbell every Wednesday morning. Unfortunately, our patient/therapist relationship isn't without some kinks.

Tummy time with Anna.

During our initial meetings with Early Steps, I made mention that we were the owners of three, strictly indoor, cats. That means we have cat dander and hair pretty much all over the place. I wanted them to make note of this so we could be matched with a PT that didn't have allergies, especially to cats. In an effort to stress this feline fact, I mentioned at least three separate occasions. Satisfied that I did my part to avoid developing an attachment to someone that couldn't stay I put the potential catastrophe to bed and moved on. Imagine to my surprise, after waiting for two or three weeks for Early Steps to find a PT, when I first spoke with Anna and once again asserted that we are a feline friendly home she admitted to being...you guessed it...allergic to cats!! Like you didn't see that set-up coming a mile away.

Tigger

Houdini and Moo-Shu

Aaaarrrrrggggghhhhhh!!!!!

Well, she was still willing to give it a try and I was determined to do everything I could to make her comfortable outside of getting rid of our cats or pumping her full of Benadryl the minute she set foot through our door. So, every morning before Anna arrives I vacuum our entire living room (including the furniture), chase down the hair balls which seem to multiple over night, and corral the cats into our bedroom. This effort has been richly rewarded by no incident of an allergy flare-up. That us until recently...of course.

Anna and Rae working on head control.

During the holiday season, when everything is hustle and bustle, I was not as dedicated to making sure the above noted measures were completed prior to Anna's arrival. The first week she made no mention of it and everything appeared to be going as usual. The second week the sneezing began and I ended up hunting for tissues. I vowed that the next week would NOT be the same and I would do everything that I usually do to make sure she was comfortable. I was overwhelmed with contrition and apologized profusely for my lapse in housekeeping.

Well, that weekend I received a call from Anna...I was dreading that call because in my gut I knew it wasn't good. She said that for two or three days after her visits she experienced discomfort caused by our cats. I felt horrible and then afraid of losing her. She offered to try another week or we could contact Early Steps and inform them we needed a new PT. Panic was beginning to wash over me. What if they couldn't find someone for another two or three weeks? Who was going to work with Rae? What if the new person doesn't like us or we don't like them? What if they heap loads of guilt on top of the already gigantic pile of guilt I already feel over my perceived lack of follow through? I can't loose Anna!

Rae and Anna playing in her sensory box.

Ultimately, it is not my choice. It is her and that is what I told her. I don't wish her to continue coming here and being uncomfortable for days after. I reassured her, yet again, that I was willing to give it another try if she was comfortable and also willing.

Our next visit went better and even though I am recommitted to making this relationship work I feel like we were just handed our two weeks notice. I don't think I will be completely confident that Anna isn't leaving until another month has elapsed. Here's to my New Years Resolution: keep things clean and contained for Rae's sake. I really don't wish to start over with a new PT.

The People Holding You Up

More than often I get lost in my own little world. I have insulated parts of my life from the rest of the world and not in an effort to protect my daughter, but to protect myself. At times I am very fragile and vulnerable. Kid gloves are recommended from time to time depending on new "developments" (not the kind I celebrate by jumping and down for) in Rae's condition. I close off from the rest of the world, bury myself in research, cry a few times if the need arises, and try to figure out which course of action is the best. It is a cycle many are familiar with and at times leads to a deeper sense of feeling alone.

Then one day my best friend was playing with Rae and stated that she has been worried that Rae wasn't connecting with her and that she too was trying to figure out how to maneuver through this Hypotonic world that we all find ourselves living in. Her statements hit me like a MAC truck. I never thought about how she was coping with her relationship with Rae and how that made her feel. It was an eye opener.

More often than not, I see my world through a tunnel with one primary goal in mind, helping Rae's development progress and finding out what is causing the Hypotonia. This tunnel vision helps me keep my eye on the "prize;" unfortunately, it also obstructs my peripheral vision and I forget that there are others on this journey. Our friends and family are walking with us and are also struggling to cope with the change in expectations we all have for Rae.

I am so grateful for all they do for us... They offer me comfort when hopelessness envelops me. They bring a sense of humor to every situation that merits a giggle. They celebrate the little victories and act like fools with squeals of, "Yea, Rae you rolled over/waved/held your cup!" They are constantly seeking answers and try to find the silver linings within the storm clouds. They listen to me when I fret, which happens a lot, and hug me when I cry, which is often. They offer me words of encouragement and lead me to new resources for help. I would be completely lost without them!

My new challenge now is to remember that they are also taking steps into unfamiliar, and at times terrifying, territory. While we all muddle through this quagmire I am making a commitment to my friends and family to do my best to remember I am not alone and they too might be struggling with Rae's Hypotonia. It is all too easy to get tunnel vision and forget the ones standing beside you...holding you up.

My Letter to Santa

Dear Santa,

I know I haven't written to you in many years, but I never truly stopped believing in the magic you bring this time of year. Now that I have a daughter (Rae) of my own, I look forward to helping her leave you cookies and milk on Christmas Eve and waking her up to the gifts you leave under our tree. I have a few simples items on my Christmas list...really the items are for Rae, not me. They may not seem like a lot of fun like the toys you usually bring, but they will help her grow and develop in the coming year (not to mention some of them will also help her during therapy). These are just a few suggestions and I know you can't bring them all, but even one of these items could be a BIG help.

To make it easier, I made a picture list:

A corner chair with table top.

If you know any local Elves that can help make this that would be great!

3 or 4 Sensory brushes.

Foam Alphabet Floor Squares (5/8" thick)

LeapFrog Magnetic Farm Animal Set

Melissa and Doug Puzzles w/large knobs.

Poppin' Pal's

A Peanut Ball (small).

I don't ask for any material things for myself because, while I may "want" a Nook or new handbag, I don't "need" anything. What I am asking (and praying) for is more patience with Rae during therapy and mealtimes, better understanding of her needs, doctors that will tell me the truth even if they know it hurts, insurance companies and medical billing departments that will do everything they can to help lighten our financial obligation of Rae's medical bills,  and continued progress. Oh and if it isn't too much to ask for...I'd really like some answers.

Sincerely,

Rae's Mom

P.S. I hope you like Snickerdoodles!

The Reality of Dreams

Have you ever had one of those dreams that just seem so real or even somewhat prophetic? I have them all the time. I dreamed a girlfriend's first child would be a girl and she now has a two year old daughter. I dreamed I was standing in a yellow room in my cousins new home, which she hadn't purchased yet nor told me any details about, and the house they were in the process of buying has a yellow sunroom. One time I even dreamed that another girlfriends husband got another girl pregnant (that one pissed me off when it did happen). The most hurtful dream was an argument with my estranged Aunt who told me the only reason I got pregnant with Rae was to "steal the limelight" from her daughter-in-law's pregnancy, because as we all know pregnancy is a competition. But, I digress...

Now, more often than not, these dreams don't come to fruition, but when they do it can be a little eerie. Sometimes, when I realize whatever I witnessed was just a manifestation of my hearts deepest desire or fear, the dreams are a little sad and frightening. The other night was a beautiful exception since I had the most WONDERFUL dream! When I woke up my subconscious had me convinced this dream would become reality during the course of the day. Unfortunately, I took the dream at face value...forgetting of course it was only a dream. So, here's the subconscious manifestation of my heart's deepest desires...

We were all lounging in our living room, like we do every evening, watching a little TV and I noticed Rae doing some different movements on the floor. I've mentioned before that Rae isn't really a "mover" and every tiny, seemingly insignificant movement can be cause for celebration in our home. So, imagine my surprise when I looked down and saw our daughter on her hands (which she totally hates doing) and knees in a crawling position!!! I was thrilled, elated, jubilant, floating on cloud nine...!! You get the picture. She was doing that little baby rock back and forth, back and forth. Then just like that she was crawling! No rhyme or reason...she was off and moving. It was like she decided today was the day and without any difficulty she became a crawler. Needless to say I was absolutely ecstatic! I contained my joy and silently signaled my husband (I didn't wish to startle her in case she stopped) to look at Rae and see that another milestone had finally been achieved. Then with a sense of relief, confidence and pure happiness I stated, "It's time to baby proof the house."

One of Rae's many trips off her blanket.

It wasn't until that evening, when we were all going to bed, that I finally admitted to myself that what was in my mind was only a dream and I felt like someone just popped my balloon. I know in my head that one day she will crawl and one day I will get to tell my husband that we have to baby proof the house, but I wish my heart would become more rational and get on board with the rest of us. For now, we will just continue to corral Rae back onto her blanket laying on the living room floor knowing that someday our dreams will come true. Now if only I could manage to dream that we won the lottery....

Doing "MORE"

So, part of Rae's therapy includes encouraging her to use sign in order to communicate what she wants instead of screeching at the top of her lungs. While this is something that I truly desire to happen, because honestly who likes having their baby yell at them, I become equally frustrated with the idea of becoming Pavlov.

"Rae...Mmmmm....Mmmmm...More?" as I tap my fingers together.

Sometimes she smiles showing me the remnants of her last bite and other times she sits there, staring at me, and after a few seconds starts to screech. So, I try again...

"Rae...Mmmm...Mmmm...More?" promptly followed with a bite of food in hopes it will reinforce what "more" means.

Occasionally, this is met with a modicum of success and Rae will tap her left hand on her tummy or tray (not always consistent, nor the same gesture). Of course this is immediately reinforced with food and me exclaiming, "Yea! You showed me "more!" You're doing such a good job!" As you can imagine, this repetitive process extends her mealtime and, for example, a simple bowl of oatmeal, which generally takes us about 20 minutes start to finish, can now take in excess of 30 minutes.

Scoop, Sign, "Mmmm...Mmmm...More," Feed, and Repeat

The "more" process can be further complicated with the addition of one more step. Instead of just showing Rae the sign for "more," I intermittently pick her hands up and make the "more" sign for her in hopes that she'll start consistently connecting her hand gesture with "more" food. So, now our mealtime steps go like this:

Scoop. Sign, Make Rae Sign, "Mmmm...Mmmm...More," Feed, and Repeat.

As much as I hate to admit this next part (since it will give people the impression that I am not...da, Da, DA...SUPERMOM!!!), I don't always like going through the "more" process during her mealtimes. Sometimes, I just want to get Rae fed so I can move to the next item on my extensive "to-do" list. I then feel immense guilt over not being Supermom and mentally flog myself for not putting Rae's developmental progress ahead of laundry, dishes, cooking dinner, Rae's physical therapy, or dare I say it...taking a shower!

I know what you may be thinking, "It's only 30 mintues. I don't see the big deal." But what you don't know is that the meals are usually followed by the two of us cuddled up in our La-Z-Boy recliner with a bottle of water or milk and trying to encourage Rae to drink more than 1 or 2 ounces at a time. The Hypotonia has made the transition from breast to bottle much more difficult because her muscles have to work harder to make the sucking motion required. For awhile I was trying to encourage her to drink in her high chair and hold the bottler herself. But, that was too much to ask her to attempt given her developmental delays. Our physical therapist, Anna, suggested I hold her so Rae would only have the physical demand of sucking from the bottle and sorta holding it to her mouth.

It worked!!! 

Before this suggestion I was worried about dehydration, but now she will take a bottle and chew/suck it like there is no tomorrow. She has gotten better at holding it, but still needs my support. So, after a meal we sit for another 15 to 20 minutes. These little routines start adding up, chipping away out our day, and before I know it we are starting the entire process over again. Figuring three meals a day, at least four attempts with a bottle, a snack and at least one nursing session...I estimate I spend about three hours of every day sitting in a chair feeding Rae. As a result, I believe I am entitled to not "Doing MORE" every once in awhile.

The Sun Rises

My husband and I tried for over a year to conceive our daughter. It was one struggle after another and my doctor couldn't offer an explanation for why we weren't getting pregnant. I was about at the end of my ability to handle the stress of "trying" and decided to give it about six more months. After those six months, I was going to give up on my dream of having a child of my own. That decision hit me like a Mac truck and was the hardest decision I have ever had to come to. Fortunately, after the decision was made I found out I was finally pregnant with our daughter, who is now 11 months old and is our own little Rae of Sunshine.

August 29, 2010 - 1 month from official due date.

My pregnancy was a cake walk and as my doctor said, "A boring pregnancy is the best kind." The only concern we really had was her size since my family is known for making BIG babies (I was 11 pounds!). After carrying Rae a week past her due date we decided to schedule a C-section. This decision was not lightly made either, but she never dropped, I never dilated, and then add in the worry that she was well over 9 pounds and you have a few good reasons for opting for a C-section. Everything went wonderfully. She arrived with 10 fingers, 10 toes, a head covered in reddish blonde hair, and GIGANTIC cheeks. To everyone's surprise, she was only 8lbs 4ozs. But our Rae had a small storm cloud following behind that I don't think any parent could prepare for. There were no obvious signs that a problem was looming just over the horizon. No test performed would detect it and it would take months before the physical symptoms would manifest themselves. Our daughter has Hypotonia.

It isn't insurmountable, but everyday things that we often take for granted will be difficult for Rae to master. Her physical milestones will be outside of the range of "normal" and as a result my conceptions of "normal" are being redefined on a daily basis. I intend to share the difficulty we had conceiving, my "boring" pregnancy & long awaited birth of Rae, and our journey into the world of Hypotonia (along with other hurdles thrown in our way). Hopefully, the things I write will be helpful to someone else. As I have been told repeatedly, "You are NOT alone."