5 Things I'm Thankful For

We set aside one day a year to reflect on all the blessings that have been bestowed on us, the things we are thankful for, and to subject a family member or friend's home to mass chaos (hosting can be a joy and a major stressor). I don't often like to participate in all the "thankful" postings on social media (they sometimes seem a tad repetitive), but I do have a few things on my list...

A very small fraction of our family.

1. I'm thankful for my family and friends (an obvious choice). They have stood beside me through all my emotional breakdowns, irrational logic, and bi-monthly (*cough-cough*...bi-weekly) pity parties (no one likes being invited to those). They have celebrated all those little inchstones with the same exuberant joy one would express at winning the lottery (maybe not that much, but it's close).  They have helped me over so many bumps, hurdles, and pitfalls to numerous to list. Most importantly, they haven't made me feel like I'm not doing enough for Rae, they don't think I'm crazy (maybe just a little) when I suspect something else may be wrong, they've willingly been my shields when strangers prod, they remind me that I also need "me time," and they love, Love, LOVE our daughter for who she is and not who she isn't.

Rae and Karen, her Occupational Therapist,
during her session this week.

2. I'm thankful for all the doctors, nurses, lab techs, therapist, case workers, insurance reps (especially Ms. Timmons at BCBS...she called me almost every day to keep me posted about the status of a particular concern), and everyone in between who have helped us maneuver through this Hypotonic maze, offered us hope & encouragement,  and (on numerous occasions) graciously taken the extra 10 minutes (okay...20 minutes...running over into someone else's appointment...sorry) patiently going over information they've already explained two or three times before and listening to me go on and on about our long list of concerns. They never once made me feel like I was wasting their time!

3. I'm thankful for my health (another obvious choice). I'm not in the best shape physically, but I am healthy enough to care for Rae (for now...knock on wood). I had a pretty big health scare this summer and ended up having my thyroid removed it was two and a half times average size, was starting to choke me, and stretched my vocal chords to the point they were about to break (my vocal chords are still not fully healed). Thankfully, it was not cancerous. While at times I feel the strain/pain (physically), I'm still able to get up and down from the floor after playtime or therapy, I'm able to lift her in and out of her crib or the tub, and I can carry her (this is becoming more difficult and my back is starting to file complaints). Under normal circumstances, I'd probably blow off my own health issues (and I still do from time to time), but I have to take it more seriously now. Rae needs me and I need to be here for her.

Rae with Anna, her physical therapist,
during this weeks session.

4. I'm thankful for my online support group (Hypotonia Parents Connection on Facebook). You ladies (and men) are awesome! You just "get it." You don't judge anyone when they get angry and vert or share worries and fears. You offer such wonderful assistance when researching testing/therapy/toy options. You laugh, rejoice, and cry with each member. It's bittersweet that the number of members keeps rising. I'm thankful for each of you...you help me stay sane!

5. I'm thankful for the inchstones. Those tiny developmental drops of rain that sustain us through the periods of draught. Two weeks ago, I was in despair. We hadn't seen much progress for weeks and I was at a loss. Nothing seemed to work and everything seemed to be off the rails again. It's not a good place to visit, let alone feel like you've been stranded there. Fast forward to this week and it was like a fog had been lifted! We have some big (positive) changes and my cup was once again overflowing with joy.

I could continue to list all the things I'm thankful for (my growing faith in God, the roof over our heads and food in our pantry, etc...), but that would be a never ending list. This is my short list. The ones I remind myself of almost every day.

Socially Awkward

Rae is a social butterfly. She loves being around people and other children. She interacts well and plays games with people (mainly patting your face or blowing air through her pursed lips). She is socially savvy (for a toddler of course).

I on the other hand...well...I feel like a social caterpillar wrapped up in my cocoon. I can handle small gatherings of maybe 6 or 8 people, but the minute I find myself surrounded by anything larger my anxiety elevates to dangerous levels. Just the act of getting ready to go to a large party makes me act like a crazed animal. I tear through the clothing hanging in my closet deeming each item as unsuitable, uncomfortable, or just too "blah"(this part usually drives my husband batty). I look at my small shoe collection lamenting that I don't have the perfect Cinderella slipper for the occasion. I sit on my bed, tears gathering in my eyes, looking at myself in the mirror and finding all the things I feel are "wrong" with me. I don't feel attractive. I'm not fun or interesting. I'm not blah, blah, blah (just fill in whatever self demeaning thing you can think of).

At the root of all this drama is the fact that I feel socially inept...at least right now. My life for the last year and a half has been absorbed by Rae and all these damn doctors & therapists. I try to get out, but it isn't easy to just "do lunch" when your trying to make sure you have enough money to cover anti-seizure meds or some other test they (doctors) want to try. Add in the complication of working around Rae's therapy schedule plus my poor attempt at a nap time routine and...well... you get the picture. I even find myself shying away from doing free things because gas ain't cheap and I probably need it to go to another doctor appointment. I swear, I talk to Rae's therapist like they are my best friends (I have even cracked jokes about that) because I see them every week and I look forward to their visits more than Rae does. So, my biggest social interaction is Facebook, the occasional phone call (from a friend instead of a collection agency/insurance rep/doctor), going for a walk with a girlfriend, and evenings at home with my husband (usually watching something from the DVR). Exciting life right?

So, is it any surprise that when it is time for me to join the "real world" where people go to work everyday, go out for dinner with friends, take exciting trips, and have steady girlfriends to "do lunch" (or do anything) with that I become angst ridden? I should think not! I don't know how to talk to them anymore. Everything in my world is about Rae and the last thing I need to talk about at a party is her latest diagnoses or test. Who wants to be a Debbie Downer?!? (The following is NOT a real conversation...just one I made up in my head...well except my response...that part is real.)

Random Partygoer: "We just got back from amazing trip to Italy. We dined at this lovely cafe with a view of the ocean and ate the best pasta I've ever had in my life. The beaches were a beautiful shade of blue like a topaz or aquamarine and Joe couldn't keep me out of the water. It was so refreshing! We traveled by gondola through Venice. It was so romantic and wonderful that I didn't want to come home! How have you been?"

Me: "Well the neurologist wants us to increase Rae's anti-seizure medication because she's been having stronger episodes again, but he's hopeful this new combination will work. The geneticist advised us to have genetic counseling before even thinking of having more children, but she's pretty sure a muscle biopsy will give us an answer. The pulmonary specialist said Rae doesn't have asthma, but she may have reflux so we have another test in two weeks. The therapist said that we'll be ordering a wheelchair sometime next summer. And the other day Rae blew bubbles by pursing her lips together and blowing with all her might!"

Um...I don't know about you, but that doesn't sound like good party conversation.

My imagination is always worse than reality. I went to a party this past weekend. I smiled, I laughed, I chatted, I nibbled party foods, I had two jello shots (call a cab!), and I even danced a little! I only felt awkward at the beginning of the party and as more people began to arrive my angst left. I talked about Rae just a teeny tiny bit, but I mostly tried to catch up with friends I haven't seen in over five months.

So, here's my party survival tip: Your friends know your life is a bit crazy and may be a tad one sided at the moment, but their okay with that...they understand (real friends usually do). Don't be afraid to go socialize. Divert the conversation away from you or your child and back to them. You may find out they're in the middle of their own nutty adventure.

It's good to reconnect with the outside world every once in awhile...in person...not just on Facebook.

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

The Quilt I Wear

Every morning, after I throw my blankets off and crawl out of bed, I pick up a quilt at the foot of my bed, wrap it around my shoulders, and weigh myself down day after day. After a year of dragging this quilt around every where I go, it is starting to look a little worn and a few places have become threadbare. The weight makes me feel exhausted (mentally, physically, emotionally, & spiritually). It's not the prettiest quilt, by anyone's definition, but it is mine and I just can't seem to leave it at the foot of my bed where it belongs.

It's my Guilt Quilt.

My quilt is made up of everything I feel insecure about and all the things I feel I don't do well enough. Every square is another piece of my guilty conscience (justifiable or not).

Top 24 Guilt Quilt Squares

1. I don't spend enough time doing therapy with Rae, I don't make her work as much as she should, and I cave in to her will on a regular basis. 
2. I'm not being as proactive as I should in finding help/assistance for Rae.
3. I don't keep my home clean enough. (UGH...chores!!!)
4. I don't keep my yard trimmed/cut. (Double UGH...more chores!!!)
5. I don't bake/cook as often as I think I should.
6. I don't get the laundry done. (if I do manage to wash everything it will lay on my dining room table for a few days before I put it all away).
7. My husband and I don't spend enough time together without all the distractions of life (Rae, emotions, "stuff") getting in the way. (this is a doozie and often leaves me feeling lonely)
8. I can't really return "favors" or do things for the people I care for & love.
9. I don't call my family/friends often enough to see how they are doing.
10. I don't do anything with my photography website or photography in general.
11. I don't make all of Rae's food. (seriously I'm doing the best I can)
12. We don't get enough sleep...I constantly toss and turn (the sand man needs to give me a double dose!) and my husband snores so I'm always shaking him to make it stop.
13. I'm angry, sad, resentful, mean, depressed, exhausted, selfish, crazed, mad, nit-picky, lazy, undisciplined...okay this list can go on forever.
14. I'm not as neighborly as I want to be or think I should be.
15. I don't exercise and I don't eat well. (Oooo....Taco Bell Thursday!)
16. I did this to my daughter because it is likely a genetic thing and that comes from us.
17. She doesn't walk, crawl, or roll over because I don't work with her enough.
18. She doesn't talk/sign/communicate because I don't work with her enough.
19. I should have caught the seizures sooner. (Why oh WHY didn't I see it sooner???)
20. I should have noticed there was a problem sooner than five months. (Yes, I was a new mom, but I should have known!)
21. I get frustrated with Rae. (every parents struggle)
22. I have to make decisions about who gets medical treatment based on finances...I really need to have my knee x-rayed, but I can wait because we have to have another MRI that has to be done for Rae and it's more important. (yes, I know that I need to take care of myself so I can take care of her and I promise I'll get to it...eventually)
23. I really shouldn't yell so much when I'm upset...at least I don't hit.
24. I never finish ANYTHING! I have so many little projects just sitting in piles that I could open my own craft store. (okay maybe I'm exaggerating a little, but I really need to finish something)

Now that I've talked about the guilt that has been sewn together to make one giant, heavy, burden that I carry around all day, I'm going to share the beautiful aspects of my quilt and the lessons it has been teaching me. These quilt squares are the things I believe I'm doing right. (the list probably isn't as long as my guilt list)

Top 10 Positive Quilt Squares

1. I love, Love, LOVE my daughter!!! She is my joy, my passion, and my purpose.
2. I try to show my husband that he is as important as Rae and that I love him too (I don't always succeed, but I try). It's easy to lose sight of the people around you when you're struggling with something or to take the frustration out on them.
3. I keep all of Rae's medical "stuff" in a fairly well organized binder (it's the only organized thing in my house). This one little show of organization makes bills, receipts (very important), appointments, insurance info, doctor contact info, and programs easier to find when I need them and offers me some peace.
4. I research what I believe may help Rae, her doctors, or us in helping her make further progress or figure out what is causing the problem. I have learned to limit this research by declaring computer free/doctor free days. This allows me to focus on the ever growing list of things I haven't gotten around to doing. I feel a greater sense of accomplishment knowing I finished something...even if it was simply dusting the living room, mowing the grass, or just playing with Rae.
5. I am learning to ask for help (that is never easy for the person who is used to being the helper). When it comes to something I need for Rae I am going to pull every string and ask for any assistance we may qualify for (which isn't much right now). I will have no shame when it concerns our daughter's needs.
6. I am making time for myself, for "us," for Rae, and for our friends/family that isn't centered around our current distressing situation (if you haven't started doing this I highly recommend it). Rae spends at least one night a week with her Mimi and G-Boss. This gives us a much needed break and allows us to enjoy a night to ourselves. Thank God for Grandparents!
7. Even though I think I'm not being proactive enough...I am being proactive. I don't have to sit at the computer all day or tie myself to the phone in order to get anywhere. I am trying to keep it simple and focus on one task at a time.
8. I allow myself to feel the emotions that present themselves. I don't wallow in them. I acknowledge they are there and then I work to move forward. Yes, some will circle back around, but I'll deal with them when they get here.
9. Some days are better then others and I'm learning to seek out the good things, not the bad.
10. Even though it is frustrating to no end, I have NO control over this situation and I realize that I have NO control. We will have to roll with the punches and have faith. (thanks for all the encouragement Maria, you are one of many prayer warriors that keeps me grounded)

It's always been easier to see the bad things in life, the things we do wrong, and the shortcomings we see in ourselves that other probably don't see. They hold us back and keep us from becoming the people we want to be. I challenge everyone that reads this to make an effort to find the positive things, no matter what the struggle is, seek out the things you are doing right. You'll be surprised what you find out about yourself. I always knew I was strong and in my weakest moments, when I feel like I can't take anymore, strength to rise up and push forward always seems to find me.

"Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Cor. 12:10

Sincerely Happy for You

I have had many years to try and learn the art of being genuinely happy for others when inside I am collapsing from the weight of my own burdens and struggles. It is not easy and more often than not I probably fail...epically, but I try so that has to be worth something...right? I'm sure at some point in time you have all been there. Heck, awards season is probably the best example of being happy for someone else. You sit in your seat, smile (make sure it reaches the eyes because that's a dead giveaway), clap your hands (not too fast, but not too slow), offer a hug or handshake, and maybe (if you're like me) go home and collapse on the floor of your shower while hot water washes over you taking your tears down the drain.

Just a few minutes old.

If you're the woman who desperately wants a baby, watching while every woman around you has a baby bump, waiting, crying inside, having tests performed, and not understanding what you did wrong. I've been there with you. I've cried those same tears and yelled at God (literally...I could so not be Job) for what I felt was some cruel joke. I plastered a smile on my face and, with a heavy heart, played shower games, listened to baby names, and mustered up as much happiness as I could manage. All the while, hoping that it would be my turn soon...it took us nearly two years and many emotional meltdowns (all mine).

If you're the mother sitting on the park bench watching children toddling around a playground, climbing steps, sliding down slides, and running to their parent(s) when they fall  (as they inevitably do), arms stretched out, demanding the comfort only they can offer. The whole time you're sitting with your own child in a stroller or on you lap...waiting, wondering, and anxious. I am currently there with you. Feeling those tiny pin pricks in my heart. Dreaming of the "someday" yet to come and dreading the question I always seem to ask the universe, "When will it be her turn?" Deafening silence is the universes reply because there is no answer.

At the park.

I am the mother clinging to any sliver of hope within my grasp. My heart longs to chase Rae around the house because she doesn't want to put on her pajamas. I want to see her run barefooted in the hot sand, the wind blowing her champagne hair, wildly laughing while chasing seagulls into the sky. When I was pregnant, I had so many dreams of what my daughter's life would be like...and now those seem more like fairy tales.

I have yet to master the art of hiding this particular sadness from those around me. I try to smile, but I know it never fully reaches my eyes. There is no twinkle. An air of sadness lingers over me. It is during those moments of uncertainty that I hug Rae just a little too tightly. I seek comfort in looking at the curls of her hair and brushing them from her eyes because then I don't have the strength to look at the person/friend sitting beside me. If I feel really uncomfortable, I attempt to dodge any potential discussion by commenting on how well their child is _______ (insert random milestone) or I start talking about something completely unrelated. I'm sure they all see through these defense mechanisms I have developed. Just call me Mrs. Cellophane.

Slow & Steady...

All that being said... I am also the mother that wants you to know that I am truly happy for you if you are one of those mothers playing on the field. I'm happy that your child has met and continues to meet their milestones. That those precious moments of their first steps are intact. Their first words spoken with loud exuberance. That you now have to chase after them when they catch you with your guard down and run like an escaped prisoner seeking freedom (usually the street or parking lot). Please keep that in mind when you see me. Don't censure your own joy because of my heartache. I may want to celebrate with you. It's what friends do. It's what people should do.  And please don't take it for granted...

As for me...one day I will be one of you. I will no longer be sitting on the bench waiting my turn. I just hope I always remember to be sensitive to those that find themselves in a similar situation that I now find myself...living in Amsterdam and trying to find my way out of the airport.

Cat-astrophe Averted!

Great News! The reinstated regiment of cleaning and locking up my three kitties has paid off and so far (knock on wood) our PT is no worse for wear.

*huge sigh of relief*

When I first wrote about the possibility of loosing Anna, it was surprising to some that I felt so close to our PT. In my defense, she comes into our home, works with our daughter every week (that we're in town) for an entire hour, offers me support, suggestions, her corner chair on wheels, smiles, encouragement, and just about anything else she is able to give. Anyone would feel close to someone that does all that for your family, but those aren't even the most important thing she gives.

Anna trying to sooth a very mad Rae.

She gives her affection and love to our daughter and that makes a HUGE difference. It is a connection that goes beyond just your random doctor or the specialist you see twice a year. She's a friend.

Recently. we missed three therapy sessions with Anna due to a death in the family. After missing week number two I was about to become a basket case because I knew I didn't have all my therapy "stuff" and therapy is the only thing we have.

When we returned, I was excited to know that therapy would resume and at the same time dreaded the "clean-up." Now, I don't expect my husband to run around the house with a vacuum like I do so it was no real surprise that our couch was covered in enough hair that it looked like we cloned a cat. Tufts of fur were dancing across our floors and the cats looked like they ruled the roost. I had to nip that in the bud right away...Anna was coming in a few days and this placed needed to be hair free (like there is such a thing).

After extensive fur removal, we were finally as ready as we were going to be for our reunion with Anna. Rae was dressed, fed and watching Curious George while we waited for the door bell to "buzz."

"Buzzzzzz!"

I scooped up Rae and opened the door. It had been three weeks and there was no telling how Rae was going to handle the reinstatement of her therapy routine or the reunion with Anna.

She SMILED!

Her grin was from ear to ear, her legs started swinging, she started babbling, and even giggled a little. She remembered Anna and was happy to see her. I was so thrilled that she recognized this wonderful woman who works with her even when she is behaving like this...

Anna is, like another mother/blogger* said, our daughters friend and nothing can replace the important role she plays in Rae's life. Thank you Anna for sticking it out in spite of your allergies.

*If you are interested in reading about the journey of another family please visit Dana Nieder's blog Uncommon Sense.

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.

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.