April Showers

Those moments we live for as parents often pass by us quickly and quietly like the passing of a gently breeze on a warm summer day. We feel the breeze caressing our skin but it is only after the breeze has passed that we tend to enjoy the coolness it brings to us. Such moments are not always fleeting and unnoticed though. When your child falls outside the nomal expectations for development or health those moments that are gentle breezes for others become glorious summer rainshowers that are reveled and danced in; where each tiny drop of rain is matched with tears of joy.

This afternoon, my house was filled with rainshowers. I was playing the "Where is..." game with Issac who was across the room getting his shoes out while I was changing Ayden's diaper and helping him put his shoes on. I ask where mommy is, where Ayden is, where his brother is etc... Lately we have been ending with "What is my name?" or "Who am I?" Today when I asked that, a little boy finally answered very quietly 'mama'. Only it wasn't the little boy I expected from across the room that answered, but the one sitting infront of me. I asked again, assuming it was a fluke..that Ayden was just babbling again, but I received the same response followed by that smile of his that just melts your heart into a giant puddle. I made sure I cheered for him the way we always do when he does something new before pulling him into my arms. And for once, it was me wetting his shoulder with tears as I reveled in my own personal rainshower.

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When the Heart Aches

Going to do a little off-topic post today in the fact that it doesn't directly relate to Ayden or FXS - though it is about his aunt, uncle, and cousins.

April 1, 2009
It was one of those days that I will remember very clearly for a long time. I was 9 months pregnant with Issac at the time, exactly 18 days from my due date.  While doing laundry, I lost my balance and took a pretty bad tumble down the stairs.  I ended up in the hospital with very irregular contractions and in a lot of pain.  The doctors suspected I hadn't fallen, and while they didn't say it out loud  we are fairly certain they thought Mr Awesome had pushed me or something.  Thankfully, they stopped the contractions and gave me medicine for pain as well as something to help me sleep.  We got home that night and I went directly to bed while a poker game (that was already planned) took place in my basement.   In attendance at the poker game that evening was my brother in law.  It was this same night that he informed us he was being deployed to Iraq in two weeks time.  You know how they say bad things happen in threes?  The same day all of this happened, my sister was 90 miles away receiving her families' own terrible news - her second daughter was diagnosed with Type 1 Diabetes just one month after her third birthday.

April 10, 2011
Exactly two years and ten days after my niece was diagnosed with type 1, her little sister was diagnosed as well at just 3.5 years old. 

There are not words to express the ache I have in my heart right now, but I know that it is nothing compared to what my sister and brother in law are feeling.  I've watched my sister struggle over the past few years.  I've seen her down and out and completely overwhelmed.  While I haven't been there to hug her and tell her things will get better, I'm thankful I know she has so many people that are there when I can't be (or when she just needs someone who isn't family).  I've seen her husband being strong for her and supporting her.  Mostly, I've seen her giving everything to daughter, often times leaving herself behind.  She was starting to achieve balance though.  Balance between friend, family, herself, and of course - diabetes. While we haven't been close the past few months, I have always paid attention.  Her Facebook statuses began to be more positive; her blog began to show more hope.  She is reaching out to befriend others who went through that terrible diagnosis, and throwing herself into raising money for a cure.  I can't even speculate what the future holds for her, but I know she will make it through.  I also know there are three little girls out there that couldn't have been given better, stronger, more capable parents. 

So, the end result of this is that I ask you to pray with me for their family.  Pray they would find peace and comfort in their hearts and know they have so many out there supporting them.  Pray that my newly diagnosed niece will start falling into the routine that will soon be 'normal' for her, and likely all she will ever know, that her older sister will help her in a way that only she can.  Pray that their oldest sister will not feel left out or overwhelmed with two type-1 sisters.  Most of all, pray for my sister and brother in law to stay confident - to know they couldn't have prevented this and that they are doing everything they can for BOTH of their girls.

I'll leave you with a few links:

2011 JDRF Walk to Cure Diabetes.  Sign up or donate here  Search for "Audrey's Brand New Day" to donate to my sister's team.

My sister's diabetes blog

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Chewy

It's spring break week here for Ayden...which means our normal schedule is changed and causes a bit of anxiety for both kids.  Overall, it's not too bad though.  Yesterday morning was A LOT of screaming.  Issac was not okay sharing his 'mommy time' with Ayden, so every time Ayden came near mom, Issac would scream.  Ayden basically whined the entire morning after birds was taken away. 

What is birds?  Angry Birds.  (known as "BIRDS" around our home).  Let me just take a tangent here for a minute and talk about this little game and it's impact on our house lately.  Mr Awesome and I both have Android phones, and both have Angry Birds on our phones.  We would play while the kids were watching a movie, or while sitting waiting for something.  It caught Ayden's attention and we started to teach him how to play.  While it was great that he was playing a game he loved (that helps SO SO much with coordination) - Ayden's hands are not clean...EVER.  He chews on them or his clothes, or toys..and it is wet.  You can imagine putting wet hands all over a touch-screen phone is just..well, gross...so playing on our nice, expensive phones was just not a good option.  Enter the ipod touch.  I have an ipod touch from when they first came out.  First generation, no external speaker, unable to upgrade to iOS 4.0 - so essentially worthless in the apps department.  As for music, well, my phone actually has more room for storage, so the ipod has been sitting around lonely and unused. 

I decided to put Birds on it for Ayden to play.  We confined him to sitting while he was playing it and it worked out nicely.  Except it is the only thing he wants to do all.the.time.  Ayden often has to 'saturate' on toys that he likes before he will put them down.  The first time we actually paid attention to this was when he attached to a toy that our OT brought.  After basically doing nothing but playing with a shape sorter for three sessions which all ended in a mess of tears, we decided to pick him up one for home.  It took three months for him to get to the point where he would put that toy down.  (yes, you read that correctly, MONTHS).  We are working on the saturation phase with birds for Ayden currently...so most of the time saying no or taking birds away ends in whining or tears (or screaming, hitting, or tantrums if we are very unlucky).

Back to yesterday...I turned around to see Ayden with an entirely black face chewing on my ipod.  While I'm okay with him playing with it...chewing on it (even though it's in a hard case) is just not okay.  He's 'mouthed' it before...but never chewed on it like he was.  Maybe gnawing is a better word...  The black on his face was pieces of the leather from the case (it's a hard case, with fake leather covering it).  While he chews on things, this was a bit over the top even for him.  I took it away, and that seemed to be the end of it.  Our afternoon was birds-free and went much better than the morning.

So..today turned out to be a repeat of yesterday's chewing incident.  I am not sure why he is chewing on things like that.  It's not new for him to chew on toys or objects, but the extent to which he is chewing on them is.  This morning I replaced birds with his 'Chewy'.  Ayden's Chewy is basically a hand-shaped teether.  I was calling it his "hand" but didn't want to confuse him since I don't want him chewing on his actual hand...so Chewy it is.  He sat on the couch for about an hour gnawing on Chewy.  I mean, I could hear him chewing on it.

So, I'm not sure if the extreme chewing is a result of anxiety over his schedule changing (or something else), if he is teething, or if maybe it is something entirely different.  I'll be making a trip to the store to restock gum for him and hopefully this won't last too long.  I feel like we've been through a phase like this before, and feel like it was also last spring.  Admittedly, neither Mr Awesome nor I can remember - I can only place it to between October 2009 and July 2010 because I know or OT helped out with it last time. (which is a large window).  If it is the spring, maybe it's aggravated by allergies or something.  I'll have to keep track of when it is worse/better so maybe we can avoid it next time around.  (Also will need to make a note to ask about it at the clinic next month too!)

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