Deepest Fear

Our deepest fear is not that we are inadequate.


Our deepest fear

is that we are powerful beyond measure.


It is our light, not our darkness,


that most frightens us.


We ask ourselves, who am I to be brilliant, gorgeous,


talented and fabulous?


Actually who are we not to be?


You are a child of God.


Your playing small doesn't serve the world.


There is nothing enlightened about shrinking


so that other people


won't feel insecure around you.


We are all meant to shine as children do.


We were born to make manifest


the glory of God that is within us.


It's not just in some of us; it's in everyone.


And when we let our own light shine,


we unconsciously give other people


permission to do the same.


As we are liberated from our own fear,


our presence automatically liberates others.





- Marianne Williamson

Funny Boy!

Jonah is becoming a master of imitating! Very funny and entertaining! He doesn't have a ton of words and even the words he has come out sounding funny to the untrained ear (due to the speech apraxia). He watches people and studies their body language and then automatically masters it.  It is a sight to see! However Jonah has no filter of the appropriate time to show off his "talent" and I am finding that he will mimic as soon as he sees fit to do so. Even if the Home Depot guy is standing right there.

In other exciting Jonah news.... Jonah has started to call me "mama"!  This is very very exciting for me! I have waited 3 years and 7 months to hear those syllables put together! I was first just a grunt, then I was Sarah "the-a"  then I was "momo" (this was both me and Morgan) And now, finally I am mama!!!

Earlier in the week I picked J up from his bus and asked (like I do everyday) "How was school Jonah?" To which he usually will look back at the bus, point, and say bye (to the bus, as if he was waiting for it to say "Bye" back).  But instead of pointing to that big yellow bus he LOOKED ME IN THE EYE AND SAID FINE!  Let's recap:  I asked J how was school today, he looked me in the eye and said "fine!"  It brought tears to my eyes. This was the first step of real communication. Suddenly all those "pretend" dinner conversations we have where we have a nightly repetitive conversation for Jonah to watch and learn from and the ball passing game where we teach him turn taking for conversation.. well all of the silly stuff was so worth it in that moment! I saw my J getting it!  Something was clicking! Something is clicking!  I'm excited to see how the next few weeks unfold with his language.

Off of Pred

Today is J's first day off of Prednisone (steroids) in a while. I am crossing my fingers he is able to stay off of them for the next month so he will be able to do T-cell testing.  I used to despise the steroids but this time around I have been impressed at how well they worked on him.  He is breathing so well and I rarely hear a wheeze out of him.

He starts working with a behaviorist in early June. I'm excited to see what answers she has for Isaac and I.  I know I tend to put all my eggs in one basket but this is how a desperate mother operates. Someone has to be able to help him. I find myself asking the question "would I rather have the lung disease or the autism to deal with?" Everyday my answer changes depending on what the problem of the hour is. At this moment I will choose lung disease. Autism sucks.

 Oh wait, I don't have a choice. We are dealing with both and this is life. His life. Tell me it will get better... for his sake and my sanity.

what little girls are made of

I am so happy that I am done with school for the summer! For the next 3 months I'm free! Well, kind of. Today was Morgs first day of summer and we sure had fun! This girl is just to funny! I am happy that she got my sense of humor because life is hard and you need that kind of magic.

When I was five all I wanted to be when I grew up was an actress!  No lie! I was determined to be famous.  I even made other kids at my school call me 'minnie Madonna.'   Morgan is too shy for that kind of craziness, but she is so passionate about becoming an astronaut. Today we went to the library and she chose two space movies and as soon as we got home she was loading it into the DVD player. She made me sit until the countdown to launch was complete.  I adore her!  She knows so much about everything. It really is a wonderful sight to see your child eager to learn more.

Good Day...Yay!

Ahhh! I can't believe that my little girl is done with preschool!  So sad!  Where did the time go? While J will continue to have school through June, Morg and I will have lots of one on one time! She has planned quite the to-do list for us. First thing: pedicures for us girls!

J has had an amazing day! So amazing that by typing this I might be jinxing everything! I have been keeping a running tally of how many "melt downs" he has daily.  His number averages around 7 on school days and up to 12 on non school days.  Today he has had 4!  Four meltdowns with only light biting, not leaving any marks on his arm... not that I can be 100% sure of that as his arms are covered in bruises from previous bites.  Now that the warmer weather is approaching I am growing desperate to "cure" his obsessive biting.  So he can wear short sleeve shirts with out others looking  oddly at my husband and I.

 Why does he bite himself?

Well I'm not sure. I can only suspect it is due to these factors. 1) lack of communication 2) sensory system is out of whack 3) he knows it makes me upset (and three year old boys like to piss their parents off)

What am I doing to stop it? Oh man, if it were that easy...

J has been biting himself for over a year, the only thing that has really changed is the intensity of the biting. (if you remember in a previous post he bit my thumb so hard I should have gotten stitches)  By now, I believe that this has become habbit for him as well as a sick comfort.   Every day is different with this boy.  Something that worked today will most likely not work for me tomorrow.  That is what makes this so frusterating.

So really I have nothing folks. I find sanity in days like today where I had room to breath and take in the boy I once knew.  I hope tomorrow will be just as wonderful.  I miss him.

Jonah, Jonah, Jonah!

I have spent the past week in shock and emotional distress. This weekend was a great release of so much of  that and finding the realization that I can't change a damn thing, no matter how much I wish I could.

We spent Saturday morning hiking as a family. (oxygen tank and all) Then the afternoon rushed by with a birthday party of a good friend and then swimming lessons in the evening. Today, was a lazy Sunday for the most part.  Seems like Sunday's are starting to be the longer day of the weekend with us not attending our usual 9-12 church.  We were going to bring Jonah and try it out this  Sunday, but when I took him in for what I thought was an allergic reaction to his face, (not an allergic reaction, just the signs of a steroid kiddo) we learned that his VRP from last weekend did come back with Rhino which may just be lingering from the last VRP. But we thought it would be best just to keep him safe and just keep him with us. However we did sneak out to fly a kite and peek at the adorable new spring babies at the farm.  So cute!!!

Jonah's Pulmo called me on Monday to check up on the crazy goon, and also to share a possible idea of an overlooked diagnosis. T-cell deficantcy. I slid the idea through my scanner of knowledge and came up not knowing anything about T-cells... Only red and white, so I  went about the day not thinking of it again. 

Thursday, I got a call from J's ped. She had been looking through/ studying Jonah's past medical history (by this time I suspect it's the size of all Harry Potter books combined) she found something that struck her fancy. She found that in April of 2008 (during "big scary time" in Jonah's life) that there was a note in J's file, that Jonah had a  T-cell deficiantcy, but it was also noted that the work up was done while patient was sick and to have child have a further work up done when he was healthy... Neither of these doctors had even spoken to each other on this topic, both ran it by me first. With no clue that they were both on the same page.

I had two extreme emotions, the first, I felt eternally grateful that I had these amazing hard working, love their patients kind of doctors working for my son, and two, scared to death that they both have come up with this very likely and rare diagnosis. What did it mean? I had to ask.  The answer: well, not one that I want to believe. I am doing my best just to focus on today but with all the what ifs fluttering in my head it makes this task so hard.  I find myself  constantly repeating that this has  NOT been proven, it is merely a possibility.

Jonah is on a large dose of steroids he needs to ween from before he can go in for the work up. Oh, and he needs to be healthy...... that's a pretty large order considering his track record... will "Jonah Healthy" due?  Cause that's as good as it's going to get.

Revolving Door

The entrance to the children's hospital is a revolving door.  That being said so is our relationship with the hospital.

Jonah was sent back to the hospital last night after spending 3 hours in his ped's office. Before that Jonah's teacher left a voice mail letting me know he wasn't sounding good, and had a racy heart rate. When I got him off the bus I checked him out myself and called to get him in with a doctor. His fever had spiked, his oxygen saturation levels were dropping, his oxygen needs were going up and I could see that it was making the ped feel uncomfortable and in return I started to feel uncomfortable! She wanted him seen by the emergency room, a VRP and a chest x-ray.

Off we drove to the hospital. Jonah was well behaved for the most part, (thank goodness for smart phones!) and then got phychotic on me the last hour, biting my thumb so hard I should have gotten a stitch.(today it continues to throb) At the hospital he was given 3 neb treatments, because the albuterol was only lasting an hour before he sounded like crap again. The VRP came back negative but so did the last one 2 weeks ago, then it grew out 3 different viruses, so I will just wait and see what it says later.  As of now his diagnosis is Hypoxia.  To be continued...

Questions of prognosis keep rising, and to be honest it makes me feel a little ill.  Sadly, I find a bit of comfort that his doctors just aren't sure.  I don't think I want a number of living years placed on my son. We will continue to take it one day at a time as we always have. Jonah is a fighter, if I have ever seen one!

He is my Perfection

A few weeks ago I ran into an old friend at the store. As we both stood with food list's in hand in the middle of the produce isle, we reconnected on a different level... as members of an elite club; mommies of children on the autism spectrum. She had said something profound, so deep, I find it hard to escape my brain. 

On this Mother's Day I would like to share what my friend said because for the last few weeks it's been my fuel.

Jill: "I like to think that when/if they find a cure for Autism, that Kade will look at me and say thank you.  Thank you for doing all of it for me mom thank you for fighting for me!"

I hope that one day Jonah will hug me tight and say the same.  I hope that he will tell me that he is proud of me. That he knows it was hard dealing with all the questions all the doctors all the hospitalizations and therapies, the uncertainties the late nights of breathing treatments and temper-tantrums, wiping the tears shed from both of us, the frustrations of not knowing if I was making the best choices for him.  My hope is that Jonah will understand that I will never stop fighting for him.  I will never let the questions I have get the best of me as they are not important.  He is. I am so lucky to have him as my child.  He is my perfection.  He is my super hero.