Style Down Update: Video Montage

We have a tight knit community.   When someone mocks our children, we all rally together to help create the following video.

Make an on-line slide show at www.OneTrueMedia.com

Thank you Patti from A Perfect Lily.

This is response to a comment made by John Thompson of GQ Magazine.  You can read more about it here. While GQ has removed the offensive comments (“bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”) have been removed online, no formal public apology has been made.

Coping with Depression: Recognizing the Signs & Getting Help

I would like to introduce to you Gretchen Mather of Julian's Journey: Life as We Know It.  Gretchen and I are blogging cyber buddies.  We have been reading and commenting on each other's blog for a while now and I am thrilled to have her a guest blogger today. I am always struck not only by the amazing cuteness of Julian, but also by her complete honesty and raw emotions so beautifully written in her blog.  I sincerely hope that after reading her guest post, you decide to continue on following Julian's Journey.

Coping with Depression: Recognize the Signs & Getting Help

Here I am, on the Chronicles of Ellie Bellie Bear blog (hi everyone and thanks Anna!) typing to figure out where to begin. Anna asked me to talk a little more about my experience with depression and I thought it was a great idea. I hope that with this post, I can help others who are currently depressed cope with their feelings and find the right treatment.

You see, I experienced a severe depression after my son Julian was born. I have a history of post-partum depression and suicide that runs in the family.

If you are reading this and are currently depressed, PLEASE KNOW THAT YOU ARE NOT ALWAYS GOING TO FEEL THIS WAY.  Read on for my story and how to cope. 

Here is a bit more about my story:

I am living proof of someone who has been to the point of being suicidal and now am truly feeling happiness again.  How did I know I was depressed? Well, I was unhappy most of all of every day. I would get up in the morning and think "crap, another day I have to get through".  Living each second of every day was torture.   I didn't even have the energy to eat.  I lost my appetite and lost about 15 pounds.  Other signs and symptoms of depression include frequent thoughts of death and suicide.  Here are some facts from www.dbsaboston.org (Depression and Bipolar Support Alliance of Boston):

Common symptoms of clinical depression include:

• Prolonged feelings of sadness, anxiety, or hopelessness
• Sense of impending doom or disaster
• Reduced enjoyment and pleasure
• Loss of energy and motivation
• Low self-esteem, feelings of worthlessness or guilt
• Indecisiveness, reduced concentration, slow thinking
• Significant changes in appetite and/or sleep patterns
• Social withdrawal
• Recurrent thoughts of death or suicide

Key Facts About Depression

In any given year depression affects up to 20 million Americans, or 10 percent of the adult population.

• Women are twice as likely as men to experience major depression: One in four women, as opposed to one in eight men, is likely to experience a mood disorder in her lifetime.
• Two out of three people with mood disorders do not get proper treatment because their symptoms are not recognized, blamed on personal weakness, or misdiagnosed.
• When properly treated, 90 percent of people with mood disorders can be helped.
• People with untreated severe depression have a suicide rate of about 15 percent

How Do You Know If You Are Depressed?

If you have been feeling down or sad for at least two weeks in a row consistently, all day of every day, then you might want to seek out the help of a therapist to talk about how you are feeling and determine if you are depressed.  Signs that you might be depressed are below (from www.webmd.com):
 

• persistently sad, anxious, or empty moods
• loss of pleasure in usual activities (anhedonia)
• feelings of helplessness, guilt, or worthlessness
• crying, hopelessness, or persistent pessimism
• fatigue or decreased energy
• loss of memory, concentration, or decision-making capability
• restlessness, irritability
• sleep disturbances
• change in appetite or weight
• physical symptoms that defy diagnosis and do not respond to treatment (especially pain and gastrointestinal complaints)
• thoughts of suicide or death, or suicide attempts
• poor self-image or self-esteem (as illustrated, for example, by verbal self-reproach)

Physical signs of depression:

• appearance of preoccupation
• lack of eye contact
• memory loss, poor concentration, and poor abstract reasoning
• pacing, hand wringing, and pulling on hair
• psychomotor retardation or agitation, such as slowed speech, sighs, and long pauses
• self-deprecatory manner, or belligerence and defiance (especially in adolescents)
• slowed body movements, even to the extent of being motionlessness or catatonia
• tearfulness or sad countenance

A bit about my mental health history
Before Julian was born, I had a history of anxiety and panic attacks but that was treated by some therapy and yoga for relaxation.  I was not on any medication to manage my anxiety.  I had also had two drug induced psychotic episodes in college (brought on after smoking marijuana) which I didn't think too much of at the time - I chalked it up to drug experimentation and a strange reaction.  Later, I realized this was substance induced psychosis. 

I haven't had a chance yet to write down my experiences in detail about my psychosis experiences (before and after Julian was born) and will likely leave that to another day (I touch upon it briefly in Gretchen's story on my blog). You can feel free to leave ANY AND ALL questions or comments about psychosis on my blog or here because it might help trigger some thoughts in order to start writing about it. 

When the trouble began....

The trouble for started not with depression, but with a psychotic episode a couple days after Julian was born which landed me in the mental hospital since this is a very serious condition.  The general definition of psychosis is "loss of contact with reality" usually characterized by hallucinations and delusions.   I spent 9 days in McClean

I was released from the hospital and came home to a 2 week old baby Julian that I frankly didn't know how to take care of and didn't have much attachment to.  It was hard for me to distinguish if these feelings were related to the fact that he had Down syndrome (unexpectedly) and I was having trouble coping with that (which I was), or if I was depressed.  I was able to determine that yes, I was sad and grieving the typically developing baby that I expected. However, I was also clinically depressed.  I also learned that it is pretty common for new mothers who are depressed to not feel any attachment to their babies. 

And then, the depression came on strong

Life went on.  I tried to get through the days.  But I wasn't feeling much joy, and on top of trying to absorb the information about my new baby who has special needs, I was trying to sort out my mental health.  People reached out to me thank goodness.  I had a therapist that I had seen for a few years prior that helped me to find a Post Partum Depression support group in the area.   I highly recommend this.  I went every Wednesday for an hour to share thoughts and feelings with other mothers.  The group was called "This Isn't What I Expected."  

If you don't have someone to talk to, please please please get help.  Go to a therapist. Call your insurance company to ask them who in the area is covered and who they can recommend.  Or call a friend to ask them to help you. Call or talk to ANYONE. The key is reaching out and telling people how you are feeling and letting them help care for you. 

Especially if you are a new mom or a mom having another child, often in this society people think that mothers are feeling uber joy after their babies are born.  No one talks about the fact that it is quite typical that moms feel unattached, sad, depressed.  This post partum group for me was a place where it was OK to voice your feelings and "normalize" them. 

Weekly therapy, doctor support

I saw a psychiatrist every week. She managed my meds.  I went to weekly therapy sessions.  My family helped take care of Julian.  In fact, they were taking care of him - I wasn't.  I couldn't really get through the days and needed a lot of support.  During one of the toughest times in my depression when I was very suicidal, I had my mom come and stay with me.  She would take care of me and cook for me and make sure I got up in the morning, encourage me to shower, encourage me to take a walk around the neighborhood.   I can not tell you how amazing that was for me to have her there. And my husband Tom of course played a HUGE role in helping me cope.  It took a big toll on everyone though.  It was not easy. 

How do you cope when you are depressed?

Well let's see.  I guess I kept thinking about the words from my therapist - YOU WILL NOT ALWAYS FEEL THIS WAY, I PROMISE.  When you are depressed, everything is the worst thing in the world. You feel absolutely no joy in anything.  I would look in the mirror and think about killing myself.  I didn't see beauty in the world, I couldn't enjoy the sunshine, I didn't care about the beautiful flowers blooming.  Nothing mattered. I wanted to die. Why was life worth living anyway? 

So if you are or have thought any of these thoughts, then he is what I suggest you do:

1) GET PROFESSIONAL HELP.  Go to someone who is trained to help you. 
2) DAILY SELF CARE. Try to do the little things every day, like shower, get dressed, comb your hair - I know this is very very VERY hard to do when you are depressed.  But you can do it.  I know you can. I did.
3) EAT. I was not hungry EVER when I was depressed.  yes, I said NEVER. I would never ever get hungry.  So I had to try to eat whenever I could (mostly people would force me to eat).
4) FIND A SUPPORT GROUP in your area.  I know, it is hard enough to get dressed, how are you going to get out of the house? Ask a friend or relative to drive you if this would help (that is what I did)
5) MEDICATION.  Medication helps correct the imbalances in your brain.  I am still on anti-depressants and they help me feel like I do today which is HAPPY. Believe me, do it.
6) EXERCISE.  Take small walks (again if you need help from friends or family, ask them to come and take you out).
7) SOCIALIZE.  I know you will not feel like planning anything yourself or even not have any fun when you get together with people.  But you need to force yourself (or ask a friend or relative to help you plan social occasions).  It is important that you get some interactions every day.
8)  and lastly, like I have said before KEEP REMINDING YOURSELF THAT YOU WILL NOT ALWAYS FEEL THIS WAY.

With the proper help from professionals, YOU CAN GET THROUGH THIS.  As someone who was suicidal and spent time in a mental institution to recover, I was at the bottom of the barrel.  I am now back at the top - working a full time job in the industry I love, raising my beautiful boy Julian, and loving and enjoying life again.  It was not easy to get where I am today, but do not give up.  Do not let yourself give up. Even on your darkest days, please remember that it will get better. I promise.  But you have to help yourself get better too.

If you want to contact me with ANY questions at all, please feel to leave a comment here or at my blog or send an email to glm0210@yahoo.com. You can also follow me on Twitter @julians_journey.

Thanks again Anna for letting me be your guest!

Follow Your Heart: Tabitha Update & Donation Matching

My heart is singing and I am crying tears of happiness.  There are GOOD people in this world.  Good people who love children just as much as I do.  Good people who want to help orphans.  Good people who do not want to see a child like my Ellie or Jane's Tilly tied to crib rails or stuck in an institution just because they are "different".



Jane at Flight Platform Living, my Forget-Me-Not Friday cyber friend, has just written a beautiful blog post in an attempt to find more The Chronicles of Ellie Bellie Bear Followers.  She too, knows what it is like to not be able to adopt the daughter-of-her-heart.

You may read it here: Follow Your Heart, Follow Anna!

That is not all, she is offering to match my donation.  That means for every follower, $2 (TWO) will be donated to Tabitha's fund!

Thank you Jane!  Thank you followers! You are all greatly appreciated.

As of this post, we have 74 followers.  I will be donating up to 150 followers :)

Little Miss Reflux

Now days my daughter runs around the house in diaper.  Yes, it isn't very stylish, but my washer needs a break and frankly, I am so tired of laundry.

After a few glorious days of thinking Zegerid was our miracle drug, the reflux came back at full force.  You know, the spit up that manages to cover her shirt, her shorts, me, and the floor?  Episodes that occur immediately after eating/drinking and then throughout the day even if she hadn't eaten for a few hours?Reflux and delayed gastric emptying.  Goody, more food to reflux with.  Yuck. Yuck. Yuck.

Heard you are talking about me again!

I have discovered a very good reason to get a dog--clean up.  Disgusting, I know.  Yet, Sophie dog has stepped up to the plate and has helped clean up many trails of spit up.  Yes, I said trails.  Ellie likes to walk and silently spit-up.  It is like Hansel and Gretel over here, minus Hansel.

Just puppy kisses.  Not spit-up-patrol in this photo.

Imagine the faces of disgust when people ask me "what does Ellie have in her mouth?" and I reply "oh that is just regurgitate food from a few hours ago.  Don't worry, she will swallow it.".   I shall repeat "Yuck!" and add in NASTY and GROSS.  I can only imagine the damage that is being done to my little girl's esophagus and teeth.  Oh my little Ellie!!!!

I do not think I ever laughed so hard.  Ellie likes to "help" with the laundry.  For some odd reason, Ellie thinks my clean sports bra is a fashion accessory.  She walks around the house with it on like this.  Did it again today.
She must get her fashion sense from me.

My little happy spitter has become not so happy.  The last few days she has been acting hungry, but then refusing foods after a few bites.  By the end of the day, she finally breaks down and eats relatively well (only to spit up some more).  She is restless during sleep and is not taking decent naps.  My little Bear is more irritable which I am sure is the direct result of disrupted sleep and hunger.  Her eyes have large dark circles.  I do not believe she has lost weight, but gaining weight is problematic right now. She is hydrated which is a great blessing and a relief for a little cyber buddy of ours having a hard time (please keep G in your prayers).

I wish she would get this excited to see me, but Ellie only has eyes for the Sophie Dog.

Clearly, the Zegerid and low-dose erythromycin are not working.  Something is up (don't say throw up my pun-loving friends) and I do not know what to do or what the cause is.  Everything was so well controlled.  Then, BAM!, out of the blue, ~ 1month ago, I had to break out the bibs and start carrying multiple changes of clothing.  What happened?  There were no dietary changes.  No stuffy noses or tummy bugs.  I just do not understand.  Apparently, neither does our GI doc for Ellie is scheduled for an endoscopy with a possibly biopsy of the esophagus on 8/2.  This will be performed under general anesthesia. While Andrew and I are not thrilled, we recognize that we must get to the bottom of this.

Miss Bearity Bear's "throne"

So Many Things

There are so many blog posts just sitting there collecting dust in my overwhelmed brain right now.  I just do not know where to start.

Reflux: It isn't improving like we thought (it is getting worse!), but my washing machine is getting excellent use.  Good thing Ellie is spoiled rotten with all of her totally stylish outfits.  (me, not so stylish)

Sensory: we have some new chews, yippy!!!!, and sensory integration techniques for Ellie Bear.   You mean I have to sew something and buy more dried pinto beans????

SPD:  Elles Belle's applied behavioral analysis [ABA] evaluation is in 30 minutes.  Mama bear is anxious!

Developmental: It's Mr. Potato Head and his bucket of parts.  Buckets of fun for everyone.  You don't know that jingle?  Oh goodness.  You are definitely missing out on the "buckets of fun".

Until I get around to more in-depth blogging, you shall be treated with some Ellie Bear eye candy.

Stollin' with Pookie Bear

'There there buddy bear.  Let me just dust you off and toss you back into the stroller.'

Here we go.  All strapped in.

Like my hairbow?  It stayed in for all of 3 minutes and 42 seconds.
Long enough for mama to snap some pictures.

** Don't forget to become a Chronicles of EBB follower.  I am donating $1 per follower, up to 100 followers to Tabitha's fund.  **

HELP NEEDED!

I usually do not post multiple times a day, but this what I would call a "blogging emergency".  Friend in need!

I'm copying my friend Christie's blog post because she says it better than I ever could . . .

Lisa Warner is landlocked in the Ukraine. She and her husband traveled overseas to ransom a child and bring him home. Fundraising was ALWAYS a struggle for the Warner's. I am begging you now, for all you know, to share this story and donate ANY AMOUNT to their FSP.

*yes, I know their FSP looks good and hearty...looks can be deceiving. When they traveled they had less than $10,000 in their FSP (adoption costs more than double that). They have now paid for one round of travel, the adoption, and all paperwork to come home. They paid for return tickets and LOST $350 for having to cancel those flights. I personally would love to their FSP hit $15,500. Lisa has not asked for ANY OF THIS. This is on my heart alone*

Joshua, their son, is sick. The Embassy doctor will not release him for travel. She believes he has pneumonia--however, she will NOT treat him for pneumonia and neither will any other doctor they have seen because they do not believe he has pneumonia.

They contacted the CDC with the xrays and doctor's reports they have---CDC is giving the doctors a few options. Wait it out (6-8 weeks and retest) or surgically obtain sputum samples to test of TB and risk Joshua's life.


The Warner's are in a very precarious situation. Lisa's sister was found deceased in her apartment by Lisa's mother. Lisa's mother has been caring for their other young boy, Jacob, at home in Michigan.

It is very likely Lisa and Dave will allow the surgical procedure to test for TB and rule it out. This is not an easy decision, nor is it safe for Joshua. The doctor who refuses to let them leave has said she does not want to do this test because it puts Joshua in danger. The doctor is consulting with her team but will ultimately leave the decision up to Lisa and Dave.

They need funds. I would love to see $6,000 more raised for their FSP. Dave has been without income for over a month now. Dave could lose his job over all of this. I pray that does not happen; but it is a real fear and one that needs prayers.

I have nothing to offer you, nothing to entice you with. No fancy cameras. No iPad. No Kindle. Nothing except the comfort in knowing you have helped bless the Warner's in a much needed manner.

You can donate directly to their FSP here http://www.reecesrainbow.org/sponsorwarner

You can follow Lisa's blog at BUILDING OUR VILLAGE

Please do anything you can, share, donate, PRAY.

There are literally stranded in a foreign country with little assistance at this point.

~Christie~

Fashion Sense: "Down Syndrome Style" (Mock my pants, not my sister)

By now, many of you have heard (and even blogged) about the GQ article in which John B. Thompson slams not only Bostonians and their sense of style, but also Down syndrome.  In stating that Boston is the worst dressed city he throws around phrases such as "bad-taste storm sewer" and "Boston suffers from a kind of Style Down Syndrome where a little extra ends up ruining everything."


Hopefully, you have also read Dr. Brian Skotko's of the Children's Hospital Down Syndrome Program blog on July 18, 2011 response.  One cannot help, but love Dr. Skotko and his ability to stand up to the media, to advocate for those with Ds all while throwing in a sense of humor. He makes me wish that I lived in Boston and that Ellie received her medical care from him.
http://childrenshospitalblog.org/mock-my-pants-not-my-sister/

Dr. Skotko & His Sister Kristen

He writes:

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is.  “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

UPDATE:  Video Interview with Dr. Skotko on MyFox Boston.  

Now everyone on here knows that my little Ellie Bear is a fashionista.  Matching bows, coordinating socks and shoes, red-heart sunglasses, fancy hats. . . the list goes on and on.  My daughter has style and sass.

The same cannot be said for her mother. . .

Ooh, this is going to haunt me, isn't it?

To all of the John B. Thompsons out there, like Dr. Skotko, I say this MOCK MY FASHION SENSE AND NOT MY DAUGHTER OR MY AUNT!