Sunday, January 4, 2009

This, that and the other thing...


Recently, I have been feeling pretty terribly about the way I reacted when I first found out that Dylan may have Down syndrome. I realize this was over 6 months ago, but for some reason I keep playing that scene back in my head. I wonder if my reaction was typical. Looking back now, it sure doesn't feel like it should have been a typical way to react. It makes me feel like a pretty shallow person, really. Knowing what I know could have, would have, and should have been different.

When the doctor told me after Dylan was born, I did not speak. I mean, not one word. Hearing her say "Down syndrome"...I don't even know how to explain what that felt like. I mean honestly, those were the last two words I ever expected to hear about my own child. All I could think of was 'this is bad...Down syndrome is bad'. She kept talking, but I wasn't listening anymore. I no longer cared. About anything. In my mind, my "perfect" little life was no longer perfect.

I remember a couple of hours later telling my sister how I wish so badly that I could go home and pretend that none of this ever happened. I mean, the pregnancy, birth, everything. She said, "Oh Laurie. No you don't." But you know what? The sad thing is, at that moment, I really did.

Now when I look at Dylan, I can't help but feel like I have somehow betrayed him. I feel so badly that we started off the way that we did. I can not believe how scared I was. What was I so afraid of, I wonder? I can not believe there was ever a time that I wished he was not here. I can not believe that I ever questioned my love for him. Even typing that hurts my stomach. I look at Dylan now and my eyes well up. I know that is terribly cheesy, but it's true! I feel so connected to this little boy now. He is my love, my hero. I hope that he will always know that.


Yesterday in the mail we received a very large and rather heavy envelope. Inside it contained 34 pages of explanation of benefits from Dylan's heart surgery. Yes I suppose 34 pages seems like alot, but what is slightly nuts is that this is just one envelope of many that we receive almost daily. What was particularly shocking to me and my husband this time, was that on ONE of the pages, 1 of the 34 pages of charges, was a list of "hospital services" (whatever those might be?) totalling
$164, 907.43. Uhm...yeah. Let me just say that we are so fortunate to have health insurance as well as an incredibly supportive network of family and friends.

So, thank you so much to everyone who has helped us, both emotionally and financially, these past 6 months. We love you!!

The other thing...

Cassidy, our 2 year old, has not taken a nap for the past 2 days. I mean, we put her up there and everything, but she won't sleep - and this is the child who typically asks for naptime. Does this mean she is done with naps forever then? If so, it's bound to be a looong winter!!!

On a positive note, she has taken an interest in her Dora potty recently. As a matter of fact, 2 days ago she even managed to...well you know...go in the potty.

Ah, the exciting life of a 2 year old.


cynthia Putnam said...

it is only by direct experience that our hearts open. we are all one and yet we feel separate.

you are being a bit hard on yourself as you had no experience loving a DS child. that they told you when Dylan wasn't even in your arms allowed you to have the response you did. i can't imagine most people responding differently.

being critical of yourself serves to shut down your growth and keep you in the past.

i appreciate your honesty and have enjoyed your blog. i have not responded before because i just got a new password, enabling me to log on.

Karly said...

I think the "This" is common...I actually think those first few minutes after hearing the words "Down Syndrome" are the hardest part of this whole thing. You don't know your child...all you know are those words. I know I will never feel better about feeling the way I did when we found out. And I will never forget the look on my husband's face. It's something I hope my daughter forgives me for and it's the main reason I blog and share out life.

Cleo said...

Way to go Cassidy!!!.

I’m happy to hear you have found lots of love and support/help during these trying times. :]

I think your reaction was typical, my sister went through the same stages. I feel you did your best when you just found out about Dylan having Ds. One of the most important things we can do in this life is to be true to ourselves. It was important for you not to betrayed yourself. You had the right to go through all those thoughts/emotions and reconcile little by little everything to make some sense of it. I think that coming to terms with the experiences that transforms our lives is an ongoing healing process, where from time to time we need to make peace with certain events. I feel that taking one day at a time, making most of our journeys and embracing our lives can help us keep going. Laurie, one thing I know in my heart is that you did not betrayed Dylan, please always remember this: It was your LOVE that gave him LIFE, It was your LOVE that carried him through his OHS, It is because of the power of your LOVE that he is with you today. I feel Dylan knows how much you love him and what is most important YOU are Dylan’s love, YOU are Dylan’s hero. I know Dylan is very proud of you, you have grown much stronger, your heart has expended and you have become a better human being because of all these experiences. Please know you are an amazing mother. Very Best ~

JaybirdNWA said...

I can remember when my wife and I were told of our sons' diagnosis. It shattered our image of what we had in mind. And without knowing the person of John made it easy to wish that we could take a do-over. Now after 5 months of knowing John, it is hard to imagine life without him. He has become a part of us and our family.

Holly said...

I have gotten to know you during the "21 for 31" postings you did in October. Your style of writing is great and I have thoroughly enjoyed following your blog, with all the great pics you have taken. I was going to encourage you in your blogging at the end of October but couldn't get my comments to post--hopefully it will post this time, since I feel compelled to comment on your posting today.
I had my first child in July of 07, and with the AFP test I had a greater than one in ten chance of having a baby with Down syndrome. We did not do the amnio and waited to see the sex and await the health status of the child at birth. It was a boy and he did not have Downs but as I got to know our boy in the first few months after his birth, I too struggled with the feelings I had during pregnancy when I wrestled with how I would feel if he did have Downs. I reached a point after his birth where I could envision him at an age where he could converse, and if he knew all of my feelings, looking at me and saying "would you have loved me any less if I did have Down syndrome, mom?" It was then I realized that he would have been the same boy, with or without the Downs, and of course I would not have loved him less, any more than if he had different colored eyes or hair.
It is evident that God has really blessed you with this sweet boy. It is funny how many times in my life something that didn't seem to be a blessing at the time turns out to bless..."God causes all things to work together for good to those who love God..." Romans 8:28
May God continue to bless you and your family as you raise these wonderful children.

Amanda said...

You are an amazing mom. Dylan won't know how you felt in that moment. I was a maniac when I had my daughter, by the way -the moment I had her I was basically screaming "is she OK is she OK" because I was completely paranoid throughout my whole pregnancy (I am not a good person in medical situations - and isn't pregnancy just one long medical situation??). She was OK, but my doctor sure was suprised at how hyper and distressed I was. I know Jane won't remember that moment. And there are many other not-so-great parenting moments I've had since then, that I hope she won't remember. We try to be perfect, but we're not - because we're human, and we react to things in a human way. You were giving a big piece of information the day he was born that you were not expecting. I think I would've reacted the exact same way, I really do. I think you are a great advocate for Dylan, and you obviously love him so much.

As for the hospital bill - holy crap!!

And as for no naps - yeesh - I dread that day!

Lisa said...

I dunno, Laurie. I completely understand what you're saying, but really I think you're being hard on yourself. Receiving unexpected news like that is shocking, absolutely shocking. And really, unless we've had direct experience before in our lives with Down syndrome, how are we supposed to think it's okay in the beginning? Getting to that point - believing that it's okay - takes time. We were entitled to grieve the child we thought we were going to have. I don't see that as a betrayal to the child we actually did have, the grieving was separate. Denial, anger, sadness - those are all normal, expected steps in the process of grief, and grief is an expected process after finding out your baby has Ds. I'm not trying to take away your feelings - I just hate to see you be so hard on yourself.

As for Cassidy, I wouldn't give up on naps just yet. She may be resisting temporarily, but I'd keep trying. Two is awfully young to give up naps (and hard on mommy too!). Yayy for using the potty too!

Jeanette said...

I meet with new parents pretty often and your reaction is fairly common. I had a lot of thoughts that went through my mind when I got the diagnosis. (we had an amnio) One of those things that I thought, as horrible as it sounds, was "Is it cruel to let her live?" Wow, yes I really wrote that! It was a fleeting thought along with many others like It's my fault, I am 35, etc. etc. I had no experience with DS at all. I just had a stereotype image in my mind and questionable assumptions. My husband and I cried, but decided that this was the path that God gave us and we needed to embrace it. I wrote my story on my blog under "A Mother's Perspective" if you are interested. I love my baby girl so much it makes my heart hurt (talk about cheesy, eh?)

It is because I had this reaction that I volunteer to meet with new parents. People need to understand the realities of DS and not be so hard on themselves for their reactions. We are human with human emotions... but luckily God is bigger and wiser than we are and he gives us blessings... even if we don't recognize them at first.

Thanks for blogging this. It is honest and important! And absolutely NOT uncommon! HUGS!!!!

Jeanette said...

Oh yeah.... I rambled so much that I forgot my comments on the naps and potty training! On the naps... even if she just goes down for quiet time, my humble opinion is keep trying. She needs some down time and so do you. As for the potty training! WOO HOO! My four year old took a year and a half to potty train... so if she in interested then FABULOUS! Break out the confetti. I am so jealous!

penny said...

Don't feel bad about your initila reaction to the news that Dylan had DS - I remember feeling exactly the same. It couldn't be happening to me and that I could just go home and pretend like it hadn't happened.

I felt guilty for so long about that reaction and it was only a long time later that I realised that it was normal and that part of it came from the fact that the birth and everything was differnt from my first baby and that I'd probably not have boned in the same way with Daniel as I did with his brother even without the devastating news.

It's a big shock, you're hormonal and of course for most of us it's a big step out into unknown territory. Don;t beat yoursefl up over it, you didn't leave him there and what matters is how you feel about him now!

Give yourself a break, let yourself enjoy NOW and forget about how you felt then, you can't change it and Dylan doesn't know and won't hold it against you. All he knows is that his mum loves him to bits and that she will always be there to fight for him whenever he needs her to.

Penny Green
Down's Heart Group

Kimberly said...

Laur, I must say that I hear what you are saying. But I want to point out that you 1. Just gave birth, when you weren't really expecting to give birth that day, and it went so fast you were in shock and that alone puts you in a different state of mind, 2.Were told about Dylan's Ds and were obvously not expecting it and were TOTALLY taken off guard and again in shock.
You may have thought things and said things you wish you didn't, but you did not hesitate to follow your little guy to Tuffs and you have NEVER left his side and your love for him has never wavered. Once you finally got to bond with Dylan, you two became inseparable.
You have really 'stepped up to the plate' and I am so proud of how strong you have become. Just remember as lucky as we are to have Dylan in our lives, he is very lucky to have you as his Mommy.

Cathy said...

Oh Laurie, been there, done that...still doing it! I beat myself up mentally at least once a week for my reaction to the news that the doctor thought Lily had Ds. I distinctly remember my comment to my mom..."I just wanted her to be perfect." Of course, now I know...she IS perfect! A dear friend of mine said to me "It's ok to mourn the child you thought you were going to have while rejoicing in the one God gave you." I hold on to that. Someone posted on my blog several weeks ago while I was beating myself up...would you think someone else was terrible for having the same reaction. Of course, the answer is a big NO. It really is hard to let go of though, isn't it?!?!?!

I am trying to forgive myself...truly. I do think I'm moving forward. Last night I was holding Lily on the couch and I started crying again. This time not because she has Ds, but because I'm so scared of the way the world may treat her. I will do everything in my power to protect this little girl, but I know the world can be cruel.

Continue to share your heart, Laurie. I'm sure you are touching the lives of someone who is going through the same thing.

Cathy said...

One more thing...totally off-topic, but to answer your question:

Lily eats solid food two times a day. She does a little better when I thicken it with a little cereal. I usually give her a fruit in the a.m. and a veggie in the p.m. She doesn't take after her mom...she likes green beans...YUCK!

Angela said...

I think your feelings were totally natural and I definitely felt them, too. I don't think you meant it against Dylan, though, just against the whole situation. The unexpected news, the loss of the baby you were anticipating. It's totally normal! Don't beat yourself up. You're a great mommy!

Yeah, Benjamin's heart surgery was expensive, too!! I am SO glad we have good insurance; I can't imagine!

My older son, Andrew, started to skip his naps around two years old, and it freaked me out b/c I was eight months pregnant with Benjamin. But it was just a phase, thankfully. Just be consistent. Andrew will be three at the end of March, and he still naps every day for 1 1/2 to 2 hours.


Nicole said...

I read your blog...the THIS part of it is EXACTLY the way I felt when we were told Emily had DS. I didn't say one word except, "OK". I also feel horrible that I ever felt that way. You are not alone.

Mara said...

I think you reaction is VERY normal but I think you forgot the crying.... ???? I think crying goes with that reaction, not to mention guilt and grief. time heals all- I am learning that myself !

I bout had a heart attack myself seeing that figure for the surgery !! HOLY CRAP ! outs is thursday ! god give me the strength- not for the sugery, but for the bill !!!!!!!! lol

Sharon said...

Laurie - I feel the same guilt regarding my reaction to Brennan's diagnosis. But, I do think that reaction is to be expected. I knew nothing about Down syndrome before Brennan was born - and the little the doctors told me in the hospital was mostly negative. So, although I do feel so sad about the way I felt those first weeks, my love and adoration now more than makes up for it, as does your for Dylan!

Amy said...

:hugs: I'm not sure how I would have reacted but I'm sure it would have been very similar to how you reacted. We didn't know how amazing Dylan is and how much he was going to surprise us and how much we would all fall in love with him. Maybe that is his extra special talent, maybe he's going to make this world a better place one person at a time.

Hector and Jennifer Varanini Sanchez said...

Don't ever feel guilty about your very human reaction to hearing the news about your son. Dylan, more than anyone, not only forgives you but loves you because of it. He is true love and sees you as that no matter what doubts, fears or regrets you experience. He loves you no matter what. No guilt....doesn't do anything but make you feel like crap. Let it go :)!!!!
Big hug!