GiGi's Playhouse- March

This place has such a way of calming me.  It does not erase or solve my problems or our challenges, it is not magical or anything crazy...but it is a place where I feel understood.  The milestones are not happening when any of us wish they would happen, the Down Syndrome is not suddenly an easy diagnosis to live with, but the playhouse is a place where I feel like I can see proof of normal life resuming.  The world did not end or stop, it has just changed for us.  As hard as it is to watch other children and families go through this, and see my son's future abilities unravel before me, it is soothing to be around people who just get it.

Today was especially nice...both Pam (developmental therapist) and Cathy (physical therapist) were on hand during play time to give us small tips and encourage us.  Best of all, Parker's daycare teacher Hilary came with us.  I am so grateful for that!  She asked if she could come without any suggestions or comments from me, and took time out of the limited weekend time that she has to spend unpaid hours with my son.  It just shows me how much she cares about Parker, and therefore, how much she is willing to do to learn to help him.  We are lucky!

Nighttime Thoughts

Tonight at one of Parker's therapy appointments, I was told again how well he is doing.  Because I am his mommy, I can take pride in that (even though it is all him!) and act like a giddy little kid who got a gold star.  We keep getting the comments like: "Oh, I would have never known he has DS" or "Wow! He doesn't look like he has DS" or "He has great mouth posture, and doesn't seem to act like a baby with DS."  

Initially, I take these comments as compliments (like people intend them to be), and say thank you.  Is that the right thing to say and do?  I'm not sure.  It gives me unjustified hope that maybe Parker's Down Syndrome is more mild, or maybe he will have a higher chance at a "normal" life --even though no research or true evidence support that thought.  To be totally truthful, though, I have to admit that there is the tiniest, smallest shred of me that psychotically and ridiculously and desperately hopes that some doctor will call me one day and say "Oops! We sent the blood test results to the wrong family, sorry!"  --but irrational thoughts are a whole other topic. 

When people say these things to us, I am cruelly flattered.  But I usually am plagued with a long list of questions afterwards.  How will people act if/when he looks/acts like he has DS?  Are they just saying these things to be nice?  What will I do if someone is rude to him or our family?  Will I be able to control my emotions in that situation?  

So far, we have been lucky to be around such supportive family and friends.  People who may not always say the right thing, but have good intentions.  Our friends and family aren't afraid to ask questions or be around Parker......I will always be thankful for that.

Ultimately, this whole situation proves that there is such a need for the GiGi's Playhouse campaign of changing how people view Down Syndrome...including me.  I don't know that I will ever be thankful that Parker came into our lives with Down Syndrome...but I can't go one minute without thinking of him or thanking God for him.  Everyone that meets him adores him.  I know he his here for a purpose...and I guess that is all that really matters in the end. 

Let it Snow!

I am sitting here today, snuggling with my boy, thankful for Casimir Pulaski day --time off --a much needed break.  We had a wonderful, low-key weekend spending time with friends and family with a lot of laying around enjoying each other's company, reading stories, and playing with toys.  Our weekend time has changed so much --and I love every second.  Time is going scary-fast, though.  I want summer to get here, but knowing that my baby's "baby time" is already 1/4 of the way gone is so sad to me!  I think his first birthday in November might be a day of celebration and a day of sadness.
Tonight and tomorrow, we are supposed to get a snow storm.  On one hand, I'll always take a snow day to spend at home with my boys.  On the other hand, I am SO excited for the gray, dreary, freezing Chicago winter to be over.  Snow days only take warm days off away from us!

Here's to low-key, super fun playtime with my little PJ.

Honesty

Love

It has taken a few days, but I finally have been able to calm down a little bit and just enjoy my baby.  He is so sweet and feisty!  We were snuggling and watching a movie this afternoon and I would just catch him staring at me --and when I would look at him and smile, he smiled right back.  It sounds so minor, but when it is your baby that recognizes your face, it is like winning the lottery.  

I was always annoyed during pregnancy, when people made comments about how you become a parent and give up your freedom, or never sleep in again, double the chores, or some-other-meaningless-complaint.  I just felt like it was a terrible way to comment on the life someone was about to bring into the world.

Yes, having a baby is hard, and the added responsibilities can be difficult to juggle, but I can't help but be thankful.  I have a beautiful baby that I just adore...and no extra chore, insurance battle, sleepless night, messy home, or extra chromosomes can take that away for even a second. 

I look at this smiling face amidst all of the hardships and wouldn't change it for the world. 

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.