Weaning and mourning

Just realized I have a lot of "draft" posts.   Should I just start posting them?

12/17. I want to say a big f you to my husband who is encouraging this all of a sudden cold turkey weaning.   I'm afraid he might be right.   But I also feel mad.   I didn't want It to be this way.   Cld turkey.   4-5 times a day to 0.  But it's started now and I don't know if ican turn back.   And is it only because I don't want to fight?  He is thinking of me and the stress of Liam's diet changes and the weight I've lost and thinks I should just wean and eat.   

Men will never never understand the grieving that accompanies weaning.   I want him to understand but he never will.    I'm so mad.   I'm so sad.

I am maybe learning to let go.   Let go of control.   Stop having the weight of the world on me and think it's only me.    Part of me is accepting this because part of me just wants someone to tell me what to do.   I'm frozen in Indecision.  

Oh god.   And it's starting to hurt a bit physically.  Or is it emotional.   Both of course   

12/19. So yesterday I nursed. I needed closure.  Told Liam it was the last time. Took a picture.   Did it while we were at home alone..  He's doing better than I am actually.  I am having a rough go.   I feel so sad. I have my period and this hasn't made it the easiest moment for me.   It's Thursday night.   My husband is at work.  I may nurse again.  It's almost bedtime.   It's my decision and it can't be rushed or forced.   

There is no right or wrong way to do things.  Breathe Sara breathe.  

7:22 pm. Just put them to bed.  Liam didn't even try to nurse.   Didn't ask for it.  And I was ready to give it to him if he had asked,  and now I am sobbing.    I'd like to know why, where the root of the grief comes from.   Is it because this has happened too suddenly?  Is it because he is my last baby and I know I will never breast feed again?  Is it my emotions and hormones cause I am menstruating  right now?  

12/22. Tomorrow it will be a week since this started, with the exception of the Wednesday nursing.   I'm still so sad.   He's pulled at my shirt a couple of times.  And I freeze in indecision.  I still have some milk.   I am eating dairy and gluten but it it's not celebratory yet.  I didn't love the gourmet pizza or the bagel with melted cheddar as much as I tought I would.   Mourning is stronger that culinary freedom.  

12/26. It's getting easier. I try not to think about it too much.  "Two and a half years is a lot". That is my mantra when I start to feel sad. 

3/1/14. It all turned out just fine.  I'm ok now.  though I admit, it was not the best time to have weaned.   Too many other stresses in my life to have added the heartbreak of that.   But it's all fine now.  

The year of YEAH ME!

12/5/13 

Liam turned my life upside down.  Every little tiny feeling of self criticism, wondering if I am doing enough has come on so much stronger.  It's no wonder when the kids are in bed I just want to sit on the couch with P and watch Roswell; improbable adventures and crushingly intense teenage love.  It's the perfect escape.   I remember sitting with the breast pump 2.5 years ago and watching Glee and meeting Becky for the first time.  I cried.  It was our anniversary. 

I have obsessively read the DS forums, but now I am ready to connect with real moms, here in my community, different philosophies and all.  I am now fb friends with them.  I asked about supplements. One is doing a normal multi vitamin, same as her other kids.  One just started dha and her son is nine. The other only mentioned keifer, which is an awesome probiotic boost.  And here I am with my dha, probiotics, trying to work in the bright orange multi made specifically for the DS population.  And still, with all I am doing, wondering if it's enough.  Wondering about the online stuff I read about DS and green tea extract, curcumin, coenzyme something or another.  Wondering how much what I do for my two year old will effect him when he is 20 or 40 or 60.  

At work I have heard through the grapevine, and at home through our EI team, that there is a month old baby with DS in the county.   Just waiting for them to contact us, they have been given our number at parents helping parents. Do they know I squealed with joy when I found out about them?  

1/20/14

So this is going to be the year of "yeah me!"   That's what I have decided.   To celebrate all that I AM doing instead of wondering how much more I could be doing.   That also includes a bit of self care.(what a concept!). 

I'm just gonna jump in and get started.   It's only 9:14 am and I noticed Liam had a runny nose so I gave him his oatmeal with chia and hemp seeds, honey and blueberries.   And applesauce with probiotics, multivitamin, vitamin d, echinacea and elderberry syrup.   (You may call me crazy for so many "add ins" or supplements, but that's ok.   I think I'm doing good things here. )  and I have done one set of flashcards.    So, yeah me!  

Food and stress= no good

Old drafts, need to come to light.  Snippets of my up down Fall journey. Food, weaning decisions, balance.  Acceptance. 

11/26/13 

I'm tired of having a family with different diets. I'm tired of all the things Liam can't eat.  I'm tired of stressing about it.  I wouldn't want to teach this to my daughter, but I'm a little tired of being different than everyone else.  And actually, I have no strong moral conviction against eating meat.  If it's good stuff: local and organic.   You won't see me buying packaged crap at food 4 less. (I'm not a total snob, I do shop there too). 

I worry about how it will be to travel.  Or when friends invite us to dinner, or play dates for Liam later.  What will he eat?   It's even stressful recently in our own household.  

This decision has taken me a while.  It took me a while to decide to give Liam fish oil even with all the good brain benefits it provided.  See, I didn't turn vegetarian some years ago.  I've been one my entire life.   

I think perhaps this has been one of the most difficult periods of my life and definitely one of the hardest decisions.   But I'm inching toward readiness to have a balanced family life.  Thinking about what's good for all of us.  

Crisis

11/26/13.  Holy mother of god and Scottish faeries. I needed that whiskey tonight. I was in a very dark place last week. Actually said crisis out loud a few times. Called a friend who is a therapist and said I need help. 

But I think I'm better. P and I went on a little date.  Just a drink.  

Didn't cry at all today.  Cried yesterday but that's cause I got a raise. Needed that boost. 

Or housing situation is changing.  Liam's diet is stressing me out.  And I got my period, the flu and a yeast infection all at once.  It sucked.  

Go tell it on the mountain

I think I may possibly understand the perspective of those people who go door to door "selling" their religion to you.  I have always been highly annoyed by them- judgemental, yes, sorry- but I may kind of get it a little now.  

A the risk of sounding cultish, my recent "religion" is called a neurodevelopmental approach to learning and working with my son who has Down syndrome.  And I want to go call it on the mountain.  Because I believe it is the best thing for helping my son develop his full potential.   Yes, I know that different things work for different people, and that everyone makes choices that work for themselves and their families.  It's just that I so desperately want to connect with someone in person who does what I do.  The online community is amazing, but I want flesh and blood, chatting over coffee while the kids play, comparing notes about program activities relationships.  

Our program, which is called NACD, truly believes that Liam can achieve a lot, and that we are never to make assumptions about his capabilities.  They believe that parents are the best teachers, and they guide us in that process every step of the way.  They combine occupational, physical and speech therapy all in one as well as helping us be advocates for our kids when it comes to medical issues.  I have found a community of moms online who are taking the same approach to their kids who have DS as I am, and it has been so incredibly helpful and reassuring to go on those forums to ask questions or just to see that everyone is talking about the same stuff I am.  

I am thinking about the friendships we make once we are parents.  Like how I have only made other parent friends since becoming a mom.  I think we tend to make friends with those who have similar parenting styles and life interests as us.  But I may be wrong.  It could be totally refreshing to have friends who have different styles and beliefs than you do.  But usually there is some common thread that brings you together in the first place.  I think I may slowly be starting to make some friends who live in my area that I may not have known otherwise.   We may have different interests and ways of navigating the new challenges that our newest additions to the family have brought us.  But we have kids with Down syndrome.  And frankly, no one else will truly get that like these moms will.  

Done!

Well Liam spent almost an hour at the dinner table but he finished his whole plate of food by himself with his own spoon. Good job Liam!

This is what I will say:

I have the chance this coming week to talk with the other parents at my parent participation class.  This is what I will say:

October is Down syndrome awareness month, and i believe one of my roles as Liam's mom is to educate others about the ups and downs of what that means.  

The gist of what I want to say is mostly positive.  

The rare times I was asked at the beginning about anything related to Ds was usually if I knew befor he was born.  The answer is no.  It was a surprise, and I had never known anyone with DS before, so this has been one wild ride.  I want to tell people about DS because the abortion rate for a prenatal diagnosis is very high, between 75-90 %. That is a personal choice and I firmly believe every woman's right.  

The fears I had at the beginning have turned into worries, no longer  fears, but I am a worrier in general.  Would he have a girlfriend?  Would he go to normal school? Would he drive?  Always live at home?  Would he engage, or have an empty look in his eyes?  That last one was and still is the hardest for me.  And I get a lot of mixed feelings when I see adults with DS.  But I am finding that Liam is indeed very engaged.  Shy around others often, but a funny and lively guy.  He loves books and playing ball and following his sister and having dance parties to lady gaga before bed.  He will have romantic feelings, have a job, quite probably live on his own.  I read about a young man who did get a drivers license, though this is uncommon.  And a man who was recently the first in Spain to get a normal college degree.  

Facts:  around half of babies have heart problems and need surgery. Hearing loss is common.  Low muscle tone ism the big challenge. Thyroid issues, autism, celiac disease and leukemia are all more common than in the typical population.  Early onset Alzheimer's. 

So I have a two year old and I am already thinking way ahead into the future.  How to offset decline in memory and cognition with nutrition and supplements.  His financial future if we were to die before him.  What needs to be put into place if when he turns 18 if we feel he isn't the best judge of financial and health matters.  

We have occupational and physical therapy once a week and an early interventionist and we also do a separate therapy program of our own volition which we love.  Right now we are working on core strength and bringing his legs in closer when he walks.  Reading books and flashcards and the input of a lot of knowledge.  Oral stimulation.  Processing, which for Liam right now means following two step directions.  

When he does typical two year old things I am thrilled.  When he started using a pincer grasp for the first time to pick up old food from the kitchen floor I said "no!", but inside I was shouting "yes!"  I freaked out hearing that some kids didn't potty train until 6-7 years old, so the fact we are starting is just friggin awesome.  

Here's what we have learned:  having high expectations is absolutely and vitally necessary. We will never let his diagnosis be an excuse for not trying our hardest at things.  We will raise him in the same way as his sister. He will be bilingual and well travelled. We will help him delve into and develop his passion.  There's a man in Arizona with his own restaurant. A woman with an internet cooking show.  I cling to these stories.  There is a catch phrase common in the DS community, "we are more alike than different". 

Questions?  

Pretend

Oct 20, 2013

I'm starting to see Liam do a little pretend play. You don't realize what giant leap that is developmentally until you are watching a child's development so closely!  

Just now he was making his penguin bounce, or dance, and make a noise.  And he's starting to get the pretend aspect of "play" eating.  

Faith

I have learned a lot about faith in the last couple of years. Obviously it has touched my life in some incredibly varied ways, but here is one tiny example:  I have read from many sources that turmeric is beneficial to people who are suffering from Alzheimer's or memory loss and knowing that Liam has a higher chance of early-onset Alzheimer's I have been adding turmeric to rice and other dishes. It may be that a more concentrated dose is more beneficial, but I don't know. I am using the spice, and it can't do any harm, and I can only hope that in some small way- along with all the other things I do, it is helping.  

No words necessary

Park

A perfect morning at the park and Liam found a new buddy to play with. And he climbed up the slide for the first time!   That takes strength, balance and coordination!

Number two

So, I kind of can't believe it that Liam's just over two years old and is already pooping on the potty! Not always, and we are not doing any formal potty trAining yet, but a couple of weeks ago pedro thought we should get out the potty and try it since we always know when he was going number two by his semi squat position and concentrated look.  

And after a few tries he was willing to sit on it!  And if he goes, we clap and cheer and kiss and blow bubbles to celebrate. 

Get this.  Today we were at a birthday party in a friend's apartment, and he was holding a toy car, when he patted his behind and said "po". So I rushed him to the bathroom, and he did it!  

I'm pretty positive that almost no one wants to hear all of this, but here is why it so amazing.... I was scared by the stories I'd heard of kids with DS not potty training until 5, 6 or so.  Not to put down those kids, every individual is different, but admittedly, it did make me sad about the future thinking of preschool in a diaper and what other kids might say.  

So yeah for Liam!

Oh internet...

A lot has gone through my head since I posted on Facebook on September 30 that I would be posting a lot this month on my blog about Down syndrome for DS awareness month (not quite 31 for 21).  I posed the question:  what have you learned since you have known Liam?  

I guess i was hoping that this little guy has already taught those who have known him, or maybe haven't met him but see his pics and read the blog and know me, something new about:  all the things he WILL be able to do in life, simple facts about DS, The range of emotions joys and concerns that a parent goes through. Etc. 

My error is tying up too much expectation to Facebook and what I post there.  I don't want to be one of those, "like" this post...people.  Or laying out every emotion on fb looking for support. It all seems a little desperate.  

Still though, one friend responded.  One. If I have a friend who has a child with autism or a friend going through chemotherapy or a friend who has something that has changed their life so much I would want to know a little bit more about it. I wondered if when I had a son with down syndrome if any of my friends or family took it upon themselves to do a little investigating to find out what down syndrome means. I know some did. And I know absolutely without a doubt that my loved ones support us and love us deeply. 

Maybe I should just leave this internet thinking for a while.  

Trouble!

Oh boy, this little guy is getting into trouble! He is so perfectly two. You might say, Of course he is- isn't that how old he is?  And while that me be true, it is hard to see the development progress reports that show his expressive language at 19 months, gross motor at 17 months, fine motor and cognition at 18 months when he is 26 months old.  I try not to put too much energy into those things, but they are written out for me.  Maybe I'll shred them.
So yes, it is exciting to see him acting so perfectly his age. Two. And getting into trouble.  "But it's the good kind of trouble!" Lupe says.  Good, except when he touched the stove for the first time- a hot stove! Or stands on the arm of the couch!

Dear Your Royal Highness

Your Royal Highnesses,

I want to thank you for taking the time to read my daughter’s letter.  As many five year olds are, she is pretty obsessed with princesses, and was disappointed when we were in England this summer that she couldn’t meet Princess Kate.  How do you explain the real world to a five year old without crushing their imaginations and dreams?

Luckily I was able to tell her that there was a rumored “due date” of July 13, so she was probably not able to meet the princess because she was getting ready to have her baby.  On that day we celebrated a family reunion in London and met distant family from Scotland for the first time.  My husband is from Mexico and it was his first time in Europe. 

Imagine our excitement to find out that the royal baby would have Alexander as one of his names, the same as Lupe’s little brother!

I also wanted to say that as a mom of a little boy with Down syndrome, I was so happy to read that you had chosen a work of art by an artist, who happens to have Down syndrome, for your son’s nursery.  You may have chosen the lovely painting simply because you felt a special connection with it, but as you know, these small choices can be so uplifting and affirming for a group of people.  Thank you.

Before Liam Alexander was born I knew nothing about Down syndrome.  The beginning was filled with a lot of fear - of the unknown, when it should have been filed with hope.  He is now two and I have learned a lot and am now filled with high expectations, and HOPE.  Hope that he has so many more possibilities than I could have imagined in those first months. 

Lupe knows why her brother’s therapists come to work with him.  But she really doesn't know anything is different about her brother.  She doesn't know what challenges he may face as he grows up.  She adores him.  Someday though, she will understand more and come to appreciate, as I do, your choice of art.  You strike me as good people.  Thank you for all the good things you are doing with the privilege of your position.  And congratulations on the birth of your beautiful son!

Most sincerely,

Sara McGrath

Here is a link to an article about the artist, Tazia Fawley:

http://www.huffingtonpost.com/2013/09/12/will-kate-painting-gift_n_3915196.html

Ignorance is bliss?

Back in June we did some blood tests for Liam to see if gluten was a problem for him as I'd heard kids with DS are more likely to have issues.  We were going to Europe  and I thought it would all turn out ok and we could eat cheese and croissants with no problem.  Well we did eat those things, and more, but not without possible long term problems.  Liam's blood test showed that he was intolerant to gluten and also sensitive to....eggs, soy, rice, corn, etc etc.  I simply have not been able to cut out those things, though after the trip I have gone back to 99% dairy and gluten free for Liam and 85% for me.  And everyone, with genuine love and concern for us asks, "well, do you notice a difference when he eats those things?  How is he reacting?"  The only thing I can tell he's reacted to is dairy. 

But here's the rub.  The pesky extra chromosome means that I think a lot more about my two year old's future.  I think about my two years old's high chance of early onset Alzheimer's. I think about how to provide for him after we are gone, or the fact that we may go around the same time, because his life expectancy is lower (though it is way higher than it  ought have been twenty years ago). 

From the Mayo Clinic:

"Life expectancy

Life spans have increased dramatically for people with Down syndrome. In 1929, a baby born with Down syndrome often didn't live to age 10. Today, someone with Down syndrome can expect to live to 50 and beyond, depending on the severity of his or her health problems."

So, this food stuff, as I understand it, affects his long term health, even if we don't see overt signs of these food Intolerances now.  I am his mom, and as many of you know, a mom will do anything for her kids.  

But I have to find a balance. If a food is not causing diarrhea or rashes, maybe I can be conscious of limiting it, but not 100% strict about it.  A happy, relatively stress free family life is pretty important.  I am trying yo figure it all out. If I would stop researching so much about my little guy, I'd be in blissful ignorance, eating pizza, but wondering about his constant congestion.  Educating myself is important, but so is letting go, and trusting my mama instincts.  

Wish me luck!

Every little thing he does is magic

We had occupational therapy yesterday and Liam just wasn't into it.  Maybe he was tired, maybe he was hungry.  But then, in the last five minutes, he did something we'd been wanting him to do for so long....he blew a bubble!  See, we knew someday he would do that.  Just like we knew eventually he would crawl, then walk.  And how we know that he will talk someday, and probably talk our ears off, though right now he is pretty far behind developmentally in that area.  We know these things will happen, and when they do...it is a big deal.  I mean major joy happening.  His bubble blowing is inconsistent, he mostly wants to do it himself (he's two!), sticking the wrong end in the container.  But he did something yesterday he had never done before, and hopefully he saw our huge smiles, and loved the hugs, and knew he achieved something new.  

Down syndrome awareness month

There are many in the online Down syndrome community who blog, and there is this thing called 31 for 21. October is DS awareness month and bloggers write a post every day of the month (as you remember, DS is Trisomy 21). I may not do 31 posts, but I will write a bunch this month as I think about what it means to be an advocate for my son, how informative the online community has been, how it feels to organize an event for this month for my work, what I would say were I to give a presentation about being a "special needs mom" and more.  

But I leave you with this question, and I really am curious to know your answers:  what do you know now that you didn't before knowing Liam?  

Somersault.

Last night Lupe and Liam were rolling around and bouncing on the bed as they often do before bedtime. And then all of a sudden Liam did a somersault.  A real one. Took us all by surprise. 

Writing

Wow.  Lupe is starting to sound out words in her head and figure out how to spell them.  That is AWESOME.  As I do with Liam, I give her lots of INPUT: reading books, pointing out letters and sounds, etc.  and you're not sure if it's sinking in, and then one day, boom!  She comes home from school showing me what she can write. Her teacher tells me that she made the connection between Lu-pe and Lu-na.  She sounded it out and wrote it.  So below she wrote elephant, penguin.  and then Luna, ombligo, es belly button.  

This is fun.