Thursday, November 15, 2012

The schedule of a 16 month old

Our schedule is nuts.  This time last year, so many people were telling me how busy I was going to get, and I nodded in my shocked daze as my calendar slowly filled up more and more.  I really had no idea though.  It truly takes a village to raise my son.  His team consists of:
Audiologist (new/we may soon switch to an Ear, Nose, Throat doctor instead)
Physical Therapist
Occupational Therapist
Early Intervention Specialist
Speech Therapist
Tech Tots Specialist (new)
Visual Development Specialist (although Levi has actually been released as his visual development was recently assessed at 95th percentile, so we will probably only see her once or twice more)
Early Intervention Coordinator

I have probably gone overboard in having Levi seen by so many specialists, but with the benefit of an early diagnosis, we might as well get on top of potential issues instead of sitting back and assuming everything is fine.  I have also tried to get him every possible early intervention he could benefit from as well.  Thankfully, we've also started Respite Care which has been such a nice bonus provided by our Early Start Program.  But it is a hectic life to say the least.  We also go to a weekly Special Needs therapeutic play group, and the weekly story time at the local library for a dose of "typical peer" interaction as well.   Not to mention, Norah has preschool twice a week, and will be starting ballet again soon.  Last but not least, I've begun doing some volunteer work at the local college, as an outlet for me, which I have really enjoyed - but it adds to the chaotic schedule.

It's been hard staying on top of everything, but I've finally gotten really good about using my iPhone calendar and have thrown all of the hard copy datebooks away.  I loved the pretty organizers and writing things down, but it just wasn't as functional and I was losing track of all the little notes and such.  We've become a well oiled machine and I am not feeling as overwhelmed as I was for a while there (especially over the summer - hence my lack of updating this blog in so many months?!)  It's been a long road, but we are trucking along now and doing pretty well if I do say so myself!  :)

Wednesday, May 23, 2012

The search for balance

I wrote my last post following several frustrating and discouraging days.  I am still trying to find my own path in this new world I am living in.  I am still torn between wanting to protect my son and keep our lives as normal as possible, and at the same time wanting to embrace our new world, to talk about his condition and share all of the issues we deal with.  I am still having a hard time talking about everything with my family and friends...  I need to find a balance...

On one hand, I don't want anyone to feel sorry for us.  I don't want to appear ungrateful or petty - there are worse things to deal with in life than having a baby who has a developmental disorder.  And I don't want to let PWS take over Levi's (or my) identity and become all that I talk about.  On the other hand, I DO want people to understand how hard it is!  Even though there may be worse things in life, it IS kind of a big deal.  I don't want to downplay his condition so much like it's all super easy and I'm handling it swimmingly.

I have never been one to talk about myself a whole lot.  I am the baby of my family and grew up as more of a listener and questioner.  A lot of my family/friends are more talkative and so in conversation I naturally do more listening than discussing my own life.  And I'm suddenly in a position where friends and family are now often asking me, "how are you?  How is Levi?" and looking for an answer that consists of more than my usual "fine."  I just don't know what to say.  Really it's that there is *so* much to say that I don't know where to begin... so I say"fine"... which is not an accurate representation.  At all.

When I do start sharing about different situations we deal with, I feel the anxiety start creeping up in my chest and throat.  This makes talking about things feel stressful.  I think this is all a big reason I started this blog - as a way to try to "get it out" because I'm so very good at usually keeping it all in.  Pushing it down and pretending it's no big deal.  "I'm cool, I'm good, I don't need anyone to worry about me."  That is my usual MO.  I'm an avoider.  I admit it.  And it's exhausting to live it, breathe it, AND talk about it.  Most of the time I would *rather* escape into my friends and families stories about their lives!

This tangent isn't where I expected to take this post, but it feels good to express these thoughts.  Thanks for listening blog-land.

Monday, April 30, 2012

The chosen one...

There are many people in the special needs community who believe that they were "chosen" to be the parents of their particular children.  You hear things like, "God knew what he was doing when he chose you to be his/her parent."  "Trust God." "God is good." "There are no mistakes in life."  "Everything happens for a reason."  There are even poems written on the subject.  Yes, I have read many of them and yes, for a moment they did make me feel better.  But honestly?

I beg to differ...

It's a nice sentiment, but I think in reality, these are cliches that people say to make themselves or others feel better when faced with a tough situation.  I think it's the "everything happens for a reason" one that I call Bull-shi* on the most.  If everything happens for a reason then why do bad things happen to good people?  Why do innocent children get terminal illnesses?  Why do tragic accidents occur?  If you can reason your way out of these scenarios, I'd ask you to please explain it to the loved ones who have been affected by such circumstances.  

And as far as being a chosen one, I'm not so sure about that one either.  Does it give me a sense of purpose to believe this statement?  Does it make me feel empowered?  I suppose that is the thought behind it.  But I am still struggling to make sense of it all.  I *want* to believe these things that make me feel better, that instill hope, that provide comfort and security in a confusing world.  But I just can't help but question it...   

I guess it's really about making lemonade from life's lemons.  About focusing on the positives and trying as hard as you can to find the silver lining.  To me, that is more meaningful than any of the above lines that people use.  That is a practice you can put into place - an attitude you can choose to live your life by.  

At the end of the day, I choose hope.  I really do.  It's my only option.  I say, "F - you universe!  You do NOT win!  If you "chose" me, then you chose wisely because I refuse to roll over, to give up, to let sadness or fear take over.  If YOU chose ME, then I choose HOPE."  It's as simple as that.  And maybe that's the reason for it all.  Maybe...

Monday, April 9, 2012

The social network

Something I have been struggling with lately is whether or not I want to share our son's diagnosis with our social network.  Our closest friends and family obviously are aware of what we have been through and what is going on, but we have never "posted it."  I guess you could say we are still in the PWS closet.  When we were first in the hospital and getting tests done, posting it on Facebook was the last thing on my mind.  I barely managed to announce Levi's birth to my FB world, let alone share the turmoil of what we were going through with former high school classmates, random co-workers, and old college friends.  Most people, though I enjoy keeping in touch with them, weren't on the "need to know" list.  Not to mention, I didn't want anyone making comments like, "we're praying for you," or "you're so strong," or any of the other cliche comments you hear when someone is dealing with a tough situation.  It was hard enough to hear those comments from our closest friends who I know really meant it.  I think I was in hard core denial, and putting it out there like that would have made it real, would have drove the knife I felt in my heart that much deeper.  So I never went there.  I skated by one of the hardest things I've ever been through in my life without so much as a mention.  And now I am considering coming out.

It may seem trivial to some but it's a big deal to me.  It's a very personal thing to share and I'm a pretty private person when it comes to most things.  (I haven't even told anyone about this blog!)  Putting it out there makes me vulnerable.  It makes me subject to judgement or pity or gossip.  Even worse, it makes Levi subject to judgement or pity or gossip.  He may be viewed through different eyes once someone "knows."  Right now he is just a cute innocent little baby who has the future wide open to him just like anyone else - and that's how he deserves for it to stay.  Once you share the diagnosis, people may think differently, they may look for the signs and symptoms of his condition.  It's human nature.  They may make comments to me about how "he looks normal".  (Seriously, someone said that to me - gee, thanks, that really makes me feel better).  I know that those comments come from a place of good intention, but it still hurts to hear.  There's really no "right" thing to say.  It's just an overall awkward situation.

I know I am just being an overprotective mama bear.  And I will remain in the closet if it continues to make sense.  But my life has become so much about Levi and his condition that it's hard NOT to mention it anymore.  Not mentioning it is to deny awareness that I could be spreading, fundraising donations that I could solicit, or even the possibility that someone I know could share a story about their own struggle or situation.  The idea of talking about it and sharing it though... it feels overwhelming for some reason.  I want to keep living as normal of a life as I can.  We have a new normal now and I have gotten used to it. And I don't want my entire life to revolve around PWS.  I've recently joined an FB group of moms to babies with PWS from the past year or so.  It's a great group and I am so happy to be a part of it and find it to be a great resource and source of comfort.  However, it does keep PWS at the forefront of your mind.  It changes Facebook for me.  Instead of being all about fun silly things and keeping up with old friends, it's a constant stream of PWS stuff.  I see all the other mothers posting about their children and yet my lips are sealed because Facebook wasn't where I wanted that stuff.  But now, there it is, in my face...and it makes me wonder, should I too, share about my son and his challenges?

Once it's out there, there's no turning back.  I met a local mother last week who has a 4 year old little girl with PWS.  She was awesome.  She said to keep living your life.  Don't make it such a big deal.  It's a part of your life but it's not your life.  You know?  She said she actually doesn't go on FB much anymore because so many people in the community post nothing but things about PWS, and she would rather live "her" life than be inundated and overwhelmed by everything she sees going on with others... I can definitely see where she's coming from.  However, I also enjoy connecting with others and see the benefit in sharing.  So I continue to debate this topic with myself: to share, or not to share?  Am I brave enough?  Am I making it too big of a deal?

Wednesday, April 4, 2012

The Next Part

After my last post I felt like writing about our experience was keeping me in a funk.  I decided to put it on hold until I was ready again.  And now here I am... 6 months later.  I'm not going to pick up where I left off, but rather jump ahead.  To now, April 2012.

The word "now" has a bigger meaning to me than it ever did before.  Before Levi was born I didn't think a whole lot about the future, because I didn't feel any reason to worry about it.  All things were possible.  I didn't know what the future held at all.  I also didn't think a whole lot about the present either.  About how important it was to enjoy the small things, the day to day, to live in the now.  But once you get a diagnosis on your child, the future and the present take on a whole new meaning.  You suddenly have a very different "what to expect" for the future, and the path to get there looks daunting.  This makes you realize how important it is to squeeze every ounce of joy and happiness you can muster out of your present. When we got home from the hospital I found myself tossing aside my "What to Expect the First Year" book that was sitting on the nightstand, and replacing it with "You Will Dream New Dreams," "The Elephant in the Play Room," and "Reflections from a Different Journey."  These are books I never in a million years expected would ever apply to me.  I lived in a bubble, a world with nothing but "perfect" children, and special needs was never a part of it.  How heartbreaking it was for that bubble to burst...

But here we are now and I find myself thinking back to this time last year, during my pregnancy.  There is some piece of me that wonders if I somehow knew.  Is that possible - could a mother's intuition be that strong?  I never did prenatal genetic testing for my pregnancy with Levi.  I decided I was having that baby no matter what, so what was the point.  (And I also assumed he'd be a healthy baby just like my daughter had been - I wasn't a high risk for anything genetic and our results from testing with Norah came out that our chances were like 1 in a million (or so it seemed).)  During the pregnancy though, I found myself consumed with thoughts about what this baby was going to be like.  Much more than I did with Norah.  I was also very superstitious and hesitant to discuss the baby's future.  I chocked it up to typical pregnancy hormones and anxieties.  Still, the silliest things would set me off.  One day in the car last spring, when I first heard the song "Born this Way," which was the much anticipated new song from Lady Gaga, of all people, I cried.  Hard.  The idea of someone being born a certain way - a "different" way - really hit me, and I internally committed to the baby in my belly that I would love him unconditionally no matter what he was.  Another day, walking in the parking lot of a local store, I saw a mom holding hands with a slow moving adolescent child, who appeared to have Down Syndrome.  It gave me goose bumps, and I thought to myself, "I bet I'd be a good mom to a special needs child."  What a random thought for me, in my little bubble, to have!

In the past 6 months I have learned a lot about myself.  I can say that I owe it all to Levi.  He has already taught me so much.  I read somewhere about parenting a special needs child, that you will learn more from the child than you could ever teach them.  This sentiment already feels so true!

Wednesday, September 28, 2011


After Levi was moved to the NICU I was trying to convince myself "everything is going to be okay."  It had to be. 

Nate went down to see what was going on and the baby was under a warmer.  The doctor said they were just going to keep an eye on him.  Meanwhile I was stuck in a bed hardly able to move.  As soon as I felt able to, I asked to be wheeled down to see and hold the baby.  They'd placed an IV in him and he was hooked up to all kinds of wires and cords.  Seeing my baby, the baby who'd just spent 9 months in my tummy, all hooked up like that, was one of the saddest moments of my life.  By about 6 or 7 pm the doctor in charge of the ICN at our hospital said he wanted to have him transported to UCSF to undergo testing.  Panic.  Testing for what??  They said he had low muscle tone and a few other issues presenting that should be looked at, and UCSF was the best place for it.  The Chaplain at the hospital came and asked if I wanted to talk.  By midnight Levi was being baptised by the hospital nun.  I held him and cried.  The fear inside of me is a feeling I can't even begin to describe. 

Throughout the night we waited and waited for the transport team to arrive.  Apparently it was a busy night.  They finally made it around noon Friday.  I was asked to be in my room while they got the baby all set up in the transporter and then they brought him in for me to say good bye before they left for San Francisco.  Seeing him get wheeled in, in a huge incubator machine with countless cords and wires, was absolutely devastating. 

Nate soon followed to UCSF to find out what was happening.  I was taking pain meds and on an emotional roller coaster, still trying to cling to an assumption that everything was going to be fine. Maybe it was just a traumatic birth experience and the baby needed time to adjust.  Maybe it was just benign hypotonia - low muscle tone that would eventually go away - as the ICN doctor had mentioned.  One of the ICN nurses had taken pictures of Levi to give me before he got transported.  I held onto those pictures of my baby and stared and cried.  In confusion, panic, fear... hope. 

Nate called to give me an update and it was during that call that I heard the words that were going to change my life.  Levi had been evaluated by neurologists and geneticists and they wanted to test him for various things, but they specifically wanted to test for something called "Prader Willi Syndrome".  Fear.  I immediately began scouring the internet.  I'd already read somewhat about it the night before when I'd been searching for information on babies with low tone, but I'd also read about cerebral palsy, down syndrome, and muscular dystrophy, among other things.  At this point I began thinking maybe Prader Willi Syndrome isn't so bad.  It seemed better than some of the other possibilities.  But I was sure he didn't have it.  He was going to start getting better and have absolutely nothing wrong with him.  We'd get released from the hospital in a few days being thankful for our healthy baby and the scare he'd put us through.... Right?

Friday night I was alone in the hospital and called Nate.  He said he wanted to be with me and that Levi was in good hands, so he came back up to Santa Rosa to spend the night with me.  That night we held each other in the hospital bed and wept together.  How could this be happening?  Saturday morning came and I began thinking about when I could get out of the hospital to go be with the baby.  I asked to be discharged early and eventually got to leave by around 5 pm.  We stopped at home to see Norah and pick up some clothing.  I walked into Levi's room - his nursery we'd worked so hard on, that I'd obsessed over decorating and making perfect - and fell to my knees and sobbed.  Why wasn't he here?  Why wasn't I putting him down in his crib?  Why isn't any of this happening like it was supposed to?! 

Thursday, September 1, 2011

The birth story

We weren't trying for baby #2, but we weren't doing anything to prevent it. We had actually just started discussing the timing on when we would start putting a little effort into making it happen. And then wouldn't you know...! Baby #2 was on the way, due July 20, 2011. We were somewhat surprised that it happened so effortlessly but we embraced it and were very excited for the new addition to our family. The timing actually seemed "perfect." It seemed this baby was meant to be and we felt very blessed.

A relatively normal pregnancy transpired, going by fast as we were busy taking care of baby #1. At a doctor's appointment at the beginning of June, about 33 weeks, I was having strong rhythmic contractions. Next thing I knew I was admitted to the hospital for possible pre-term labor. We were scared about a too early arrival but with the help of medications baby stayed put and I was released the next day with orders to come back in a few days for monitoring. At that next appointment, I was hooked up for a non-stress test and baby didn't pass. His heart rate didn't accelerate like it was supposed to. So I was then sent for a biophysical profile (BPP) ultrasound, and it turned out everything looked fine. But I had to go back again in a few days to try the non-stress test again. This is when the worry set in. For the rest of the pregnancy I was going in and failing non-stress tests but always passing the biophysical. The hospital staff assured me as long as the BPP looked good everything was fine. I spent hours hooked up to those non-stress test fetal monitors, worrying. Why isn't he moving like he's supposed to? I could certainly feel him moving around. The BPP gave us a sense of "everything is fine" but I still worried. Finally delivery day rolled around. We were nervous for the c-section; it felt so weird to have a scheduled c-section. Driving to the hospital I remember saying, "I hope there's nothing wrong with him" as I had many times in the recent weeks thanks to all those failed non-stress tests. We just chocked it up to typical expectant parent nerves and assumed everything was going to be fine, just like it had been with our daughter. During the surgery, it seemed to be taking a while. When the doctor said she needed a vacuum assist because he had a big head, I was nervous, thinking it was going to be a huge baby! Then she pulled him out and I was anxiously awaiting his cry. I'd been excited to hear that cry for 9 months and in the days leading up to his birthday, kept thinking, I can't wait to hear him cry so I know everything is okay. But he cried only briefly and not very loudly, and then just a lot of whimpering. I was officially worried, and now began anxiously awaiting his Apgar score. I was stitched up while Nate and the baby went for the newborn testing and typical clean up process. After sitting in the recovery room for a while I finally buzzed the nurse and asked her to find out what was taking so long. I wanted to be with my baby! Nate and Levi showed up shortly after and I finally got to hold the little guy who had been causing me so much worry. He was all bundled up and sleepy, like a perfect beautiful newborn baby. We snuggled and took a couple pictures and I sent out a text message announcing his arrival and birth details: 12:05 pm, 7 lbs 6 oz and 19 inches (not nearly as big as I'd expected/feared! A doctor came in to check on him again saying he had been a little blue so he wanted to take another look at him. I asked his Apgar and they said it was a 7 which was okay. The doc said he looked good and handed him back over to me. Then I decided I wanted to get him started on breast feeding. I unwrapped him and put him to the breast. He was sound asleep and wasnt even opening his mouth. I decided to just hold him for a few minutes and then tried again. The nurse popped in and I mentioned he wasn't nursing. She said that was common and to just keep trying. But still he wouldn't open his mouth or even root around. Norah had immediately latched so I wasn't used to this. Then I noticed his legs and feet seemed pretty blue. I told Nate, "get the nurse, something's wrong!" and then Levi was swept off to the nursery. That's when our birth story ends and a whole other story begins.