Sunday, October 5, 2008

To my friend Tera,you are never alone.Sadness often does well with company.

Get It Down; 31 for 21

When I introduced the campaign "31 for 21' and my participation in it,I let everyone know that it would be hard to say what you would find here daily.I decided to approach it by just letting my feelings and instincts lead me in the direction of the day and I would go from there.And so it has gone.For the last few days the posts have come quite effortlessly.I have not been daunted by the expectation to blog daily,I have in fact looked forward to it.But today,well,I didn't see this particular post content coming.I had decided a long time ago to attack this blog in the most honest manner I could.Brutally in fact at times.I really do not live my life any other way and have gotten in serious trouble because of it.No one has ever had to guess where they stood with me.I have not been exactly proud of that, in some moments but it is who I am, however the evolution of that honesty quality has garnered speed over time.I have had my friends tell me over the years, that I scare them a bit,followed by a chuckle,but I know there in lies some truth in the words.Example of my, without notice, venting is as follows:Today was an EXTREMELY difficult day.Emotionally, one of the worst I have had in a very longtime.The in's and out's fairly complex.Too much I fear to make any sense but here it goes.Recently our lives have once again settled.Mostly because Zoey has settled.The big girls are doing absolutely fantastic and the boys have transitioned nicely into new routines and they continue to not miss a beat in their care free little boy lives.Just as I want it to be for them.Mark,well,is Mark.The ever present voice of reason and calm.As he headed out the door to work,yes,on a Sunday.Not a complaint from him.No nasty words for the traffic he was sure to encounter.No words of skepticism for the promised 5 hours of work that will surely turn into much more.Mark,the glass is half full.Life will be fine,easy going guy.Then there is me.Hitting what I have described ,at another point along our journey as,well,a post traumatic stress kind of thing.Hit it last year about this same time.Last year,Zoey's surgery was behind us.She began her steady progress forward and made strides.We rejoiced.Except for that itty,bitty part of losing our house,2007 came to a close swimmingly.Seriously.The worst had to be behind us.But that nagging feeling of dread hung on and the realization of what we had been through and what Zoey had lived through hit hard.I had survived out of need and no other choice.My kids needed me.Zoey needed me.I briefly thought about medication but quickly decided against it as I was still nursing.I moved forward.Passed through the trenches and moved on.People said of course that the worse was behind us.Behind Zoey.News flash.Never become comfortable.Infantile Spasms became the new battle here.Never heard of it before February 2008 and trust me,wish I never,had ever found out about it to this day. Soon our life got mixed up,messed up,screwed up again and that was nothing compared to what was going on in my poor babies little developing brain.But I once again went into survival mode.Took care of everything and I mean everything and passed through yet another very dark time.The worst to date.Notice I said to date.Because trust me.If I hear one person say ....2009 has got to be better than 2008,I might just choke them.Stand warned.Fast forward to ...... today.I must first preface this by saying ...I do know how absolutely lucky my child is to have: been born with Down syndrome and not some incurable disease, to have survived transient leukemia, had a major stroke inutero as to not to have killed her,had successful AV Canal Heart repair and finally, gained seizure control.Yes.Huge obstacles conquered.Thankful.Truly thankful.But come on folks,does any of the things a fore mentioned, strike you as being things that don't exactly correlate with thankfulness.Do you get my drift?Am I really expected to always be thankful for those things not being so much worse?Today,as I perused the aisles of Costco,Ralphs and then Trader Joes I realized that,I hate going out of my house.It actually causes me to dial up panic mode.People actually cause me to feel as if I might be slightly agoraphobic.I kid you not. If our cupboards had not been so bare I would have left the first store and allowed my personal shopper,Mark,to go for me.I realized today that I have become a hermit.And I like it.Feels better and easier.Isolation wears much better then the idea of facing other people,especially running into ones I haven't seen or heard from in ages and hearing"How are you?"Really,do you want to know.Or just being polite?I dart out of church at the end as not to have to get into dialogue.My circle of friends has begun to resemble more of a .... minus sign.Hardly looks like a circle.Don't get me wrong,those friends that make up that minus sign,darn good ones.Remarkable in fact.All I could ask for really.But today was a reminder of what life has become.How different I have become.Once again,changed for the better for the most part but left with tinges of bitterness and resentment.I will bring up this point again,which means that probably I have a great big chip on my shoulder about it but here goes nothing. I absolutely do not even feel a part of the Down syndrome community sometimes.That is honesty at it's best and probably didn't win me any additional friends for the making either.Maybe it cost me a few I couldn't afford to lose in the first place.However,having said it I truly do not think many other moms of children with Down syndrome know quite what to say to me.Just my experience thus far, is all I have to go on when I say it too.My struggles,Zoey's struggle are just so much more then the average.Example:on a Down syndrome development chart,the average Down syndrome child will sit ,one minute or more by,9 months.A Down syndrome child,on average will play Pat-a cake,on average,at 11 months.Zoey is 19 months old.Neither one is any where near the horizon.Okay, well she can sit for maybe 10 seconds at a time.Which we are thrilled about.It means she is on her way,in her time.I logically know this but logic has nothing to do with matters of the heart.Also cited,severe delays in Down syndrome children can be attributed to seizures or neurological delays or major health issues.Hum,check,check and check.I am going to use a word here that my mom hated when we were growing up and I too,deemed it not my favorite in my house but right now,it seems appropriate,I am really pissed off today.Do any of the things I said mean I don't love Zoey just as she is?Does any of this mean I do not accept Zoey just as she is?Absolutely not and anyone who knows me or reads this blog knows how much I adore this child.But sometimes,I wish I had heard from ONE other mother of a child with Down syndrome,how lucky they were,their child was,to be spared any of the extra garbage.Just as we wish parents of "typical"children looked at how fortunate they were as well, once in awhile, I wish the same came from my very own new community.For instance,I love the video of Zoey doing So Big.Darling.But did anyone catch on that only one arm went up?Yep,one arm.Why?She can't use the other arm.She had a stroke.Try teaching sign language to your child with one arm behind his or her back.Not an easy feat.I actually had someone tell me yesterday how cute it was she did so big with one arm.Yes, definitely cute but.... see, that is Zoey's reality.If I have come off as totally unappreciative of the miracle of Zoey,ungrateful in anyway, then you have missed my point.I have said to those closest to me,numerous times in the past,that I have had little in common with those traumatized by the initial diagnosis of their child with Down syndrome.Not that I can't sympathize with their feelings, it's just that that so wasn't me.I do not have to come to terms with the loss of the dream of a "typical child", I instead have to come to terms with the loss of the dream of a "typical Down syndrome child".When I see a Down syndrome child of Zoey's age,attending a play group,dancing,signing,babbling,sitting,playing with toys with both hands and so on,I feel a loss of sorts.I feel sad for my child,even if she is not sad herself.Zoey is Zoey.I love her unconditionally.But today, I guess I just feel entitled to feel sad for her.Trust me I know things could be worse.I have seen it with my own eyes during her months in the NICU.I see it clearly each and every day.I know I am lucky to even have my child when mothers actually grieve the loss of a child they will never be able to hold again.This I know.This is why I know too this will pass.Quickly.It always does.It is just part of the process.The necessary emotions that one must hit,deal with and pass through.It does not come down to lack of faith or ingratitude for a gift that has been given.It is just about being human.Most will understand that.Or at least I hope they will.


Kele said...

I don't think you have to worry what anyone thinks about your 'bad day'. We are all entitled to such, and those who don't get that, well, piss on them (oops, there's that word you don't like).
H, I know you from your blog well enough to know that tomorrow you will be past this 'down day' but for now you should allow yourself the sadness, the anger, and not feel bad about that. Occassionally that does us all good. It centers us and gets us back to where we belong, they are needed emotions, I truly believe that.
I wish I had words of wisdom but a part of me thinks that isn't what you need at all, or want for that matter. You just need to feel what your feeling and pass through it. You will, you have in the past and you will again in the future. Such is life sweet friend.

Cheri said...

I hope the rest of the day you were able to cozy in and hibernate a have time to wrestle with your thoughts long enough so you can move on to the next with them not quite as daunting. One of the things that drew me to your blog was your honesty...and in fact I think one of the first posts I read you were having a day like this and I appreciated your honesty and ability to just be real... and look, I keep coming back even! :)

This is not an easy road we are on, and there have been times I've told people that, "I can handle the Down's the heart issues that are the hardest for me". And in your case it has been even more than heart issues that you have had to watch Zoey struggle through. That is heart wrenching as a parent, and it feels so unfair.

I did see Zoey's left arm...but I remember thinking, "Yay...she's moving it a little". I am sorry you had a tough day!

Anne said...

We all have bad, sad days. Just know that if you can manage to get out of bed tomorrow and put one foot in front of the other that you're winning the war, not losing the battle. Hang in there.

Reagan Leigh said...

Sorry...I wish we were better company for each other...but I know exactly what you mean. I'll give you a call today (as soon as it's light over there in CA), Reagan's up and I don't have the time to type!

amy flege said...

what a wonderful post. I wish i could write my feelings like you do!!
hugs to you!

Larkinsmom said...

And then there is "us". I was absorbed by every word and understand EXACTLY how you feel. To know that our children are on an atypical delay is enough to take in but we isolate ourselves to a degree in order to deal with it.

I wish I could hug you across the states. Andy is struggling with grief all over again because L begins school tomorrow. He is terrified - as you fully understand.

You are in my thoughts again - every single day. Kiss our sweet girl for L and me. :)

Christina said...


I think the feelings you have shared are feelings that we all have from time to time.

I do feel SO lucky that Dawson was born perfectly healthy, that he has made steady progress, that verbally and cognitively he is actually pretty typical. I admit that there are days when I feel a bit of panic about that, like I'm just waiting for the other shoe to drop, for the significant delays to start. "When will he REALLY start falling behind?" I sometimes ask myself.

Over time it has become easier to recognize where those feelings come from, to accept them as just part of being human and being a mom, and let them go.

In our local DS support group there is a little girl, about 8, who had major problems and would be considered "lower functioning" - she is nonverbal, very physically delayed, the whole nine yards. When we first met her months ago, I remember feeling so uncomfortable... I could not help but think, "Thank God Dawson seems to be doing so well, we will never have to deal with THIS... but then what if we do? How can I handle that?" I avoided going near her because I could not get over that.

The last time I saw her a few weeks ago it was like I was looking at her through new eyes. She was just this beautiful, joyful little life who made me smile. We babbled together and she kissed my cheek. I remember thinking, "If this is Dawson's future, it's okay." Because I think most days I realize how precious each life is, how every life is of EQUAL worth, beyond compare.

A child with severe cerebral palsy who is bedridden and like a baby forever might be the greatest inspiration to her family... that's more than can be said for many of us typical people. There are skills and abilities that they don't have charts for. :)

Sometimes I think about the fact that I have no idea what Emerson will be like. It was one of the things I had to overcome when we first thought about adopting her. Her medical chart says an ultrasound of her brains revealed enlarged ventricles... of course that could mean brain damage, or it could mean nothing at all. We're rolling the dice here, but don't we all when it comes to kids? :) I know there might be times I wish things were easier for her, easier for me, but I know that while those feelings won't be constant, love will be. I know it is the same for your sweet Zoey.

It's hard to cheer yourself by thinking, "It could be so much worse" - unless you've had it worse, how can you make that leap? Pain is so individual, it's impossible to compare situations. Instead I try to think of all the good that is in RIGHT NOW and how much better it can get - just by me tweaking my perception a bit. ;)

I too retreat inward when I'm feeling down. I'm one of those people that makes my poor hubby call to order pizza because I don't like to talk to people LOL! Sometimes I just lose myself and I think I need to shut out everyone else for a little while until I find me again.

From a fellow hermit, let me know if you need someone to talk to while you're looking. ^_^

heidi marie said...

the whole time i'm reading this post...i'm thinking "is she describing me??" i too speak my mind, and i too get in trouble for it. but i feel that if people don't get you or maybe i should say they look down upon you because they don't get you...then, well that's their problem. speaking your mind, your heart is far braver than being quiet. you have been through a lot...your daughter has been through a lot. of course you are not mrs. sunshine all the time. you wouldn't be human if you didn't have phases of difficult times. you have every right to feel what you are feeling. you know who you are, how you feel about that little girl, and who your real support is!!

Anonymous said...

Heather- I honestly am amazed that you don't have more days that you feel this way. I think it is good for you to vent. I so wish I lived nearby so I could help in any way. Please try not to hide in your house because you are an amazing person and your friends and family really care about you and your family.I hope I can talk to you soon.

Carey said...

Okay Heather, I know you think I don't read your blog, but I do! I hope you're feeling better today. I'll admit, I'm a little too honest too, so here it goes ... Are you talking about me? Yes, I commented about her so big video, b/c she IS beautiful, and yes I noticed only one arm going up, but that's b/c I've learned to see the ABILITY, not the disability. I just look at her and see how far she's come and I couldn't be happier for her. Are there days the disability scares the you know what out of me ... yes. In fact quite a bit lately. It's as if the whole disability thing has hit me in the face lately. But I have to continually remind myself who Chelsea is and even if she never talks, I'll still love her to death. (Heck I'll even translate for her till I'm dead if I have to!)

Okay now hermit, it's time to come out of your shell! Go enjoy the sunshine with your beautiful little girl. You live in California, go enjoy it! And someday, you know, we're going to head west and visit you, and you'll have to come out of your house then!

Oh, and P.S., you didn't lose this friend (even if you wanted to!)

waldenhouse said...

Just stumbled across your blog. I am glad I did. I am of the camp that finds your honesty refreshing.

Your daughter is beautiful.