Friday, December 16, 2011

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.

Tuesday, December 13, 2011

Venting and a Hot Shower

Sometimes I am not a well adjusted Mom. I have been known, on occasion, to join Rae during one of her screaming fits or cry while I hold her when there seems to be no end to her tears. It stems from a deep seeded frustration over not being able to figure out what she wants or needs. Sometimes it feels like she is doing it just to throw a wrench in the cogs (which is silly to feel). It sucks!

I am sure most parents out there can relate to this overwhelming sense of agitation and helplessness when faced with an unconsolable child, but there has to be a better way to deal with it than joining in Rae's temporary madness. Lately, it has been happening in the morning during breakfast and again an hour later.

Currently I have four options (not in any particular order after 1):

  1. Run through the check list (clean diaper, hunger, thirst, pain, gas, temperature, etc...). I always do this first in hopes that I can nip the fit in the bud.
  2. Lose my cool and screech along with her singing a tune no one wants to hear.
  3. Place Rae in her crib, shut the screen door, and seek refuge in the peace of a hot shower.
  4. Open up the waterworks and have a good crying session.

I feel horribly guilty when I opt for the second and third choices.

Once the checklist has been exhausted and the fit is still moving ahead at full steam I continue down the list and decide on the next plan of attack.

Screeching like a bird with her is counter productive for both of us. It doesn't make the frustration stop nor does it truly offer any sense of relief...only more frustration and guilt over screeching like a mad woman. So, now I am trying to curb this ill advised, ineffective behavior and have sense found other options better suited to our needs.

Leaving her to fend for herself and teaching her to "self soothe" can be equally stressing because I want to be there for her. I want to hold her and tell her it will be okay. Wipe the tears from her cheeks and make whatever ails her cease. I want to fix it! But I can't. There are times when it just seems best to let her vent. We all have to vent sometimes and Rae is no different. When all other courses of action have been tried and ended in failure, then it is time to let her scream it out. Eventually, she falls asleep, usually after I hop in the shower, and when she wakes up from her nap all is right in the world again (or at least in our home).

Since I'm a firm believer in the cleansing power of good cry, I don't have a problem joining Rae when she is on a tear bender. Of course these occasions are few and far between because the incessant crying has to go past an acceptable (in my opinion) fifteen or twenty minutes and usually no one else can be around to help alleviate the pressure (Dad or Mimi). Eventually, we both calm down and are able to move forward with our day.

I frequently utilize the third option...letting her vent. There is no sense in my fuse blowing because hers has already blown. After I have exhausted the checklist and if I'm not in need of a cry, I leave her to her own devices. She mumbles, whines, screeches, cries, and cusses me out in her own adorable baby talk fashion. We are working on finding and teaching her different ways to communicate more effectively (sign language), but until then we're going allow her the time to vent and I'm going to take a nice hot shower.

Here's a mealtime fit for your viewing and listening pleasure...

Thursday, December 8, 2011

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.


Rae's Mom

P.S. I hope you like Snickerdoodles!

Monday, December 5, 2011

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....

Friday, December 2, 2011

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.