Panic Rising

It is a panic attack, fighting for air, overwhelming evening for me.  I am really feeling the pressure of trying to schedule multiple therapies, evaluations, doctor visits, checkups, and …dinner..or sleep..or chores.  It seems like therapists are booked, and their hours don’t mesh with a working parent’s.  It is moments like this where I feel like I am at the bottom of a deep, dark hole that is filling with rushing water. 

In addition, we are struggling with how to determine the quality of therapists.  Everyone who I have spoken to about it says “listen to your mommy instinct”  or "trust your gut" --and mine says that our speech therapist isn’t doing enough for Parker.  However, my conscience likes to make excuses for people…like “but…Parker fell asleep,” or “maybe he doesn’t want to overload us,” or “maybe I’m not asking the right questions.”  I think this next week will be our last chance with this therapist before we ask to be reassigned. 

We have been fighting to get Parker started on PT also.  Our state coordinator FINALLY got us in touch with one last week who just now called me.  She said “since you are a teacher, could we do his therapy appointment at 3:00?”  --I guess sometimes people don’t realize that teachers work longer hours and have a commute and kids to pick up.   She is unable to come after work hours, so she will have to meet Matt at Parker’s daycare.

…This is when my next control-freak-induced breakdown starts.  Because I work, and my job happens to be almost an hour in the opposite direction of my husband’s work and daycare, I won’t be able to be at his physical therapy appointments until summer.  Gah! I need to let go and take some deep calming breaths.  My husband is an incredible man and more than capable of dealing with this…but it doesn’t take away the fact that I want/need to learn from the PT too, and see Parker’s progress for myself.  I already feel like I miss so much of that as a working mom, that it breaks my heart to give up even more.

For the time being, I am just going to snuggle my sweet sleeping baby and take deep breaths…reminding myself that it will be okay and we can do this.  I can be strong for him.  I have to be. 

The Constant Conscience Conundrum

HA! Say that one three times fast :)  In all seriousness, though, I really battle with my thoughts on staying at home versus going to work.  As a disclaimer, it really isn't possible for me to stay at home financially, but there are days where I like to fantasize about the idea!  

On one side, I take pride in my professional life.  I work really hard, as does Matt, and we have a lot of student loans to back it up!  I enjoy the days where I feel successful and love learning new things.  Additionally, the daycare at Sears takes great care of Parker.  He gets to interact with other kids in an inclusive environment that is development-focused.  That social interaction is so important!

On the other side, there is so much research (Mommy Guilt) out there about how I can help my baby succeed.  There is the Feuerstein Institute that teaches "mediation" --a middle (wo)man who helps bridge the gap between the environment and learning for children with difficulties.  There is Brain Gym, that teaches the connection between physical movement and left-side/right-side brain development.  There are so many things out there that I could be learning and trying with Parker.  INSTEAD, I am at work taking care of other people's children...a job which I love to do, but am sometimes bitter about.

As a teacher, I see a T-chart of pros and cons in my head.  Don't get me wrong...I know that being a stay at home mom is no easy feat.  I also know that giving up almost 60% of your child's awake/day time every week is a big sacrifice.  

Working and having a successful career is important to me and I have put a lot of time and money into it.  I only hope that I don't look back on this time and wish I had done something radically different.  At this point, I will spend every waking moment fighting for my little man, and learning everything I can to help him, and push others to help him.

Gala Part 2

This weekend was more incredible than I could have possibly imagined.  We got to see our families, and celebrate Parker, who at 3 months old, was a perfect gentleman, and the star of our Gala night.  We heard stories of inspiration, met children who are continuously achieving despite what the text books say, and had the chance to share our story with over 700 people in Chicago and in 15 cities country-wide.  We are honored to be Parker's parents, and will do everything possible to teach him to share his voice.  We will stand for him, speak for him, fight for him...and teach him to do the same for himself and others around him.  

Thank you to all of our family and friends for your support, donations to GiGi's, and for just listening these last 3 months.  We wake up in the morning ready to face the day because of you.  Parker is so lucky! We can't wait for Gala 2014!

Gala Weekend Part 1

We are so excited to see all of our family and friends coming into town for the Gala! This weekend is all about celebrating for the Preis family. We are celebrating our love for Parker and the support system we are building for his future. We are also giving thanks for the strength and love he has given us already. Here's to Parker Jonathan!

Coping

The journey of becoming a parent is a life-changing one for sure...and having a baby with special needs adds a lot of challenge to that journey.  I have been thinking a lot about best and healthy ways to cope with the devastation that comes with learning your child has a special need, and am still really trying to process whether the ways I have chosen are healthy or not.  My default when in pain has always been writing, hence the blog and sometimes, on days when I need to vent darker thoughts that I am too ashamed to put on the blog, I type or write on paper and just push it away when I am done --almost to purge the emotions and get a little breathing room.  Oftentimes, I just stay busy enough to avoid thinking about it all together.

I will say that I am thankful that the darkest days are a little fewer, and a little further between.  I know there will be phases with this...and the triggers for the teary days will change.  Right now, I get upset thinking about the things Parker will miss...usually after thoughts or comments about college, or hearing about achievements of other people's kids.  I am unjustly terrified of the day where someone makes fun of Parker, and in hearing news stories, the day when we come across someone who is just cruel.  I brace myself for those times, even though they may never come. My biggest coping strategy is just talking/writing through my thoughts and questions.  I have been blessed with family and friends that really listen, and so far, aren't afraid to talk about it or ask questions.  

I am mainly thankful for Parker himself, though.  Looking at him and snuggling with him are what heal me the most.  He contently rolls through each day without a thought towards the label he has been given or the challenges he might face.  He makes me stronger.  He forces me to be a better mom, and a better person.  

NICU Follow Up

The NICU at the hospital Parker was born at have a follow-up clinic where he can be re-evaluated for various therapies.  We were really excited that Parker is looking good in terms of development right now.  He holds his head up well, tracks objects, reaches for things, and looooves looking at faces.  We are very anxious to start physical therapy, and honestly, frustrated that our Early Intervention coordinator has not gotten it worked out yet.  It is so hard to keep up with all of the appointments, suggestions, and long to-do lists that come with babies --let alone a baby with special needs.  It is scary to think that we may miss something or do something incorrectly.  We are slowly getting better at trusting others with Parker's therapy and care, but it is hard to let go of. 

GiGi's February!

We got to hang out with our new buddies Amy and Ryan today!  Ryan is one day older than Parker.  We also got to celebrate Valentine's day with our GiGi's friends!  It is so nice to go there and meet people!  

Today, there was a volunteer developmental therapist that was helping us with Parker.  She had great tips on how to stimulate him and get him to practice certain movements.  

Of course, Little-P also loved seeing his Auntie Morgan! Big Thank You to her for coming to visit us and check out GiGi's!

Such fun!

Check out our pictures!

Thank You!

We have to say a huge THANK YOU to the Raker and Washburn families for their sweet sweet gift.  They got shirts from GiGi's Playhouse and dressed up for a picture in support of Parker and GiGi's Gala.  

My heart hurts from being so full of appreciation and admiration!  These are the moments that we will hold close on the hard days and that make us burst with pride for our little boy. 

THANK YOU!

First Smiles

Whew!

It has been a while since I've been able to find the time to post!  Parenthood has a way of really making you adjust your priorities.  For example...the mess that is our apartment has been sorely neglected because let's be honest...if I am given the choice between snuggling my baby for the few hours we get to spend together at night and cleaning...I think the choice is pretty clear.  My grandma, in her 90 years of wisdom, has told me to forget the chores and housework and spend time with your children, because retrospectively, the time with family is what really matters.  

Parker has had a good week or two! He is doing well at daycare with teachers that seem to be truly interested in his best interests.  He got his two month shots on Monday...which were irritating for him, and of course devastating for me!  Aside from the initial screaming and some fussiness the last few days, they didn't phase him.  He is our tough little boy.  We did find out that he should probably see an ENT (ear-nose-throat doctor for those of you not into the lingo).  We were a little bummed, as we foolishly thought we might have a short break in the never-ending specialist appointments.  

We are so excited for the next few weekends, though! We have visits to GiGi's, the Gala, visiting new friends and old friends, and quality time with family all to look forward to.  Can't wait! 

Visit to Springboro

On Friday, we decided to make a last minute trip down to Springboro!  By we, I mean Parker and I went without Matt!  

He is such an easy baby...he doesn't mind the driving or overnights in unfamiliar places.  He got to spend quality time with his Nonna and Grandpa, got to see Jen and little baby Dantzler, and meet the Zimmer clan!  He adored being fussed over by the pretty Zimmer girls.

It is so amazing to have friends and family that love him so much.

Face Time

As I have mentioned before, technology is AMAZING.  We are so lucky to have Face Time and be able to see and share Parker with far-away family and friends.  My parents and grandparents on both sides have been able to see Parker as he gets older from more than 300 miles away.  Their support of us is unwavering, and Face Time just makes it so much more meaningful.  One of these times, I will have to post pictures of us all using Face Time....even though all of us are usually in our PJs with no make-up on :)  So as always, more pictures of Parker fit in nicely!