Tuesday, September 23, 2008

Ups and Downs (no pun intended)

There are days when I feel like I've gotten over some major hump in dealing with this whole DS thing, that I've made some major strides in acceptance and making peace with it, and that the darkest hours are behind me.

Today is not one of those days.

Today I find myself fighting the tears (again). When I wake up each morning, I never know if it's going to be a good day or a bad day. I guess nobody knows that when they wake up, but ever since Finn was born, I seem to be much more aware of the unpredictibility of my feelings.

(Caveat: I know a lot of people read this. If you feel that anything I write here refers to you, please just understand that I'm not attacking anyone; writing here is just how I attempt to process my feelings.)

I'm not sure what set me off today. I started off with good intentions. I've distanced myself from my MOMS Club ever since Finn was born, despite the fact that I've been a very active member for 6 years now, and despite the fact that they all rallied around us in such a huge way in the weeks after Finn was born. But it's been difficult on an emotional level to get back out there. But today I decided to try - I figured I'll never know unless I try, right? So I got the boys off to school and then wrangled the girls and Finn and headed to the park for a MOMS Club playdate. There were only a few moms there with their kids, and everyone was really nice to me. One mom hugged me. She's never hugged me before. It was nice, but I felt suspicious. Does she feel sorry for me? On a rational level, I know that she was surely just being supportive . . . but I seem to question everything in my head nowadays. Everyone was really nice, asking to peek at Finn, who was wrapped up in a Moby wrap, and asking how he's doing these days. One mom showed up with her baby who was born a few months before Finn, and I suddenly recalled that when she was pregnant, her routine ultrasound showed something that might have indicated Down syndrome. But everything turned out to be okay with her baby, and there she was today with her perfect baby, and there I was with my Down syndrome baby. I wonder if she was looking at me and feeling relief. Or pity. Or both.

Another friend texted me this morning to tell me that her friend had her baby this morning. I presume she had a "normal" baby. The friend who texted me just had her "normal" baby a couple of weeks ago. I know she's just trying to keep me included in the same loop as before, to not make me feel like she's walking on eggshells around me . . . but it's really hard to hear about other people's perfect babies right now. It hurts like an almost physical pain.

I hate it that I have fallen into the habit of categorizing babies now. They are either "normal/typical/perfect" or not.

I have a number of friends and acquaintances who have young babies. They complain about things like lack of sleep, screwed up routines, how messy their houses have become because it's so hard to do it all. Sometimes I want to scream, "Your baby will sleep through the night eventually! You'll manage to create a routine! And you'll figure out how to keep your house up or live with the mess! It's all temporary! You want to know what hard is? Finn has Down syndrome, and he will ALWAYS have Down syndrome! I'll likely have to carry him around until he's 2 because chances are he won't learn to walk before then! I'm going to have to learn freaking SIGN LANGUAGE because he's not going to learn how to talk for a few years! We have years of physical therapy, occupational therapy, and speech therapy to look forward to! He has a hole in his heart! I don't know if he'll ever be able to live on his own and take care of himself! THAT'S HARD!!"

And I absolutely despise myself for feeling so angry/jealous/bitter.

What right do I have anyway? After all, I've been fortunate enough to have 5 normal/typical/perfect kids. I feel like I'm being greedy for wanting them all to be normal/typical/perfect. And I know that there are parents with children afflicted with much worse things than DS, and that they would probably look at me and want to scream, "You want to know what hard is?!?" I try to remind myself that on the spectrum of genetic disorders, DS is definitely one of the more mild and manageable conditions.

But still.

And I know I'm making it nearly impossible for my friends. Apparently there is no right thing to say or do with me. If any of them were to ask me "What is it you need from me right now? What is it you need me to say/not say/do/not do?" I wouldn't be able to even begin to answer them coherently.

I don't know what I need or want. I know that it's very difficult right now to be around people with typical babies. But I don't want to surround myself with people with DS babies either because I think that would also get me down. I guess this is how people become reclusive and lose the people they care about. And I don't want that to happen either.

I feel lost right now.


Ann said...

Hi Lisa. My name is Ann. I also responded to one of your posts on the Baby Center board but I actually found your blog before I knew you were on that board. I have Nate, 3&1/2, and twins, Maggie and Caleb, 5 months. We got Caleb's Down Syndrome diagnosis after he was born. I wish I had the right words but I don't. I just wanted to thank you for your blog and for sharing your experiences.

Cleo said...

Thank you for sharing your journey with Finn. I admire your courage and honesty. You are having a bad day today with lots of mixed emotions and no one can judge you for that. You have the right to think, feel, say and do whatever you need to at any given moment. Finn’s birth can be a catalyst for personal growth for you and your entire family. Perhaps you are becoming someone different with other priorities/perspectives. Whoever can see beyond your pain and respect it, is exactly who you need in your life right now. Finnian is a beautiful, healthy and perfect baby with an extra chromosome and all. His Ds diagnosis doesn’t define who he is or who he is going to be. Finn will walk and talk when he is ready and you will enjoy all of his triumphs, big and small. You need Finn as much as he needs you. Every person has a unique mission and purpose in this world. Finn does too, and your job as his mother is to help him bring out his full potential. As his best advocate, inculcate in Finn and in those around, your faith in him. Lisa, please try to be gentle with yourself, take one day at a time, choose positive thoughts. Finn has your genes, he is as determined, brave and strong as you are. Finn is going to be OK, you are going to be OK, your family is going to be OK. Everything is going to be OK ~

Karly said...

I know how you feel. I was pregnant at the same time as 6 coworkers...all with typical babies. It was a little unnerving to hear them complain about things like dealing with an early crawler/walker, etc. You are right, some days are just hard. {hugs}

Larry said...

Lisa, Sorry to hear today is tough. Hang in there and don't be hard on yourself. :)

I also wanted to say something in connection with a prior post of yours re support groups and your current lack of desire to get involved - Last night at book group Varsha commented on how it was difficult for her to get involved with support groups and such after her daughter's diagnosis and she had at first felt apprehensive about being around other kids with the same condition - but she said when the time came and they were in the presence of a large group of families with children with the same condition as her daughter in fact it gave her such tremendous hope because she saw all the kids doing things the doctors and books and internet said her child would never do - hang in there Lis - hoping tomorrow will be a better day for you. Lisa B

Chrystal said...


I appreciate your blog so much. I didn't start mine until my daughter turned 1, but if I had starting writing earlier, it would have been so much like yours in the beginning.

I remember saying to a parent coordinator of our local Ds group that there was NO WAY I could come to a playgroup or a meeting. I just couldn't imagine my daughter, or myself, in that situation. I was afraid that I would react negatively or see something that scared me. I never told anyone stuff like that. What I felt wasn't pretty or politically correct, but it's what I was feeling at that time. So many people deal with this stuff in the dark, but you're bringing it to the light.

I want to offer you the choice to call me if you ever want to...seriously. Yes, me, a stranger. I wouldn't blow smoke up your butt at a time like this. I know some of what you're feeling and I know that it changes for the better. Really, it does. The crappy days do get outweighed by the good days.

Cindy said...

Lisa... I love reading your posts because at times I can so relate and other of your posts I just want to cry with you.

There I times that I look at Samuel and all the mothers that had babies at the same time and I want to go hold him in a rocker and just cry for hours because I don't know if I will even have him 6 hours later. As I told you before, we are working on it -
but it is easier to distance myself. I don't know why you or any of us do it, but we do it. Maybe it is hard to face the future and what it may or may not hold for our children and us. Either way, I feel that what you are dealing with is very normal.
I think one thing I have learned is that when I can't handle it I just avoid people irl and ol and when I can I do. But mostly, I try to just be so grateful for when Samuel does something that is unexpectedly wonderful.

I wish I could just give you a big hug. If you scare anyone off then they really are not there for you. Remember that. Those that truly care will stick with you regardless of how you are feeling or when.

Cindy said...

Also - or should I say PS - Thank you for your email. You must have been inspired, and I cried... so Thank you.

rickismom said...

Oh, you take me back thirteen years in a FLASH! Your feelings are SO typical! Negative thoughts are OK., just try to not "stay there". Switch the radio station in your mind to a differrent channel when you can.

T-rex said...

Not much I can say, here, except that good or bad it all needs to be expressed and the people who care about you will be here during the fallout, the aftermath, and anything that lies beyond. Being honest without yourself about your feelings, no matter how ugly you think they are, is the best way to heal. I am there, in a different area of my life, and bottling it up or faking for people around me is just exhausting. There has to be SOME way to release it, and blogs are your medium. Your friends, myself included, are here for the good thoughts and the 'bad'. I only appreciate your willingness to share your journey with us, because I think you'd be surprised how comforting and beneficial some of your struggles are to us.

Laurie said...

Hey Lisa,
When I am having a bad day, I find that I get incredibly frustrated with myself bc I feel like I should be over the whole pity party thing. But really, it's only been 3 months! For me, it feels like it has been SO much longer, but 3 months is such a short amount of time really.
I know that throughout my entire pregnancy, I had envisioned a life for Dylan - the Dylan that I was expecting. But, once we got the Ds diagnosis after he was born, everything changed. I know it's not quite that extreme now, but at the time it felt like that.
This is a huge adjustment and one that has got to take time. At least, that's what I keep telling myself.
I know this is so freaking hard, Lisa. So hard. Every time I think that I am getting better, I fall apart the next day. It is an incredible roller coaster ride.
Love you!!

My name is Sarah said...

Hi Lisa, This is Sarah's mom. I have been reading through your blog tonight and just wanted to first share that I appreciate your writing. You have expressed the exact feelings that I too have experienced. Your thoughts are very normal and not to be repressed. My daughter is now nineteen, so I've had many years to figure out where we all fit in this life. I still have moments though where I pause and wonder what if things were different. I don't love her any less, I just wonder. I can promise you that the good days will soon out number the bad. Before you know it,Finn will soon be running around the backyard with his siblings and you will be standing at the door simply amazed at how fast they are all growing. Please never worry about posting your thoughts, this ds blogging community is an amazing support.