Wednesday, March 10, 2010

The not knowing

I'm not sure how to even begin this without sounding ridiculous and self-indulgent. But I think I will, and if you feel your eyes starting to roll, then skip ahead to a post with pictures or something . . . I won't be offended. But sometimes I learn a lot from reading the blogs of people who are in tough situations, and maybe a look into my processing will help someone else. Or, maybe you're just nosy and like the voyeurism of reading someone's innermost struggles :)

Maya still has no diagnosis for the source of her global developmental delays . . . and I don't like the be dramatic, or feel sorry for myself. Those two things combined have left me in an interesting place over the last year-ish. I haven't had a mental framework for how to interpret her . . . will she grow up to be a "normal" kid with delays, who will just need a little time to catch up . . . maybe start school a year late, or not even that? Or will she be a kid who will need to ride a special bus, go to a special school, and need assistive living when she's older? And I know that everyone wonders what the future will hold for their child, but our situation is, well, a little different.

The not knowing is killer. I hate it. In the beginning, I would go into every dr's appointment (and there were a lot of them) with a swirly mixture of dread and nervous excitement----"Maybe this is when they'll figure out what is wrong----I don't want something big to be wrong----but if you can't tell me that everything is normal, and least tell me what the something wrong is----please don't give me more of the not knowing." But we just gathered more and more handfuls of the not knowing, as tests (cardiac tests, karyotype, genetic screening, MRI) came back normal. And each test that came back normal was rightfully a cause for big celebration (!!!) but a little, teeny tiny, grey voice deep in my head would say "oh, come on already."

I realized a week or so ago that I've been pinballing (that's when you shoot back and forth like the ball in a pinball machine) around through Kubler-Ross's stages of grief (even though I wouldn't necessarily call my thinking grieving, maybe it fits). In any given week, and sometimes on any given day, I would spend time in anger (at the world, at the system, at the doctors, sometimes at Maya), denial (she's just taking her time), depression ( ), and acceptance. And as quickly as I wrapped some sort of acceptance around me, it would slip away a little bit and denial would swoop back in. Although the ratios of time-spent-in-each-place have changed, I've been pinballing for a long time now.

Like 15 months.

At times I've wished for something with a name. At least "Down syndrome" would be a label that people could understand. It's hard to go to music class, or the pool, or anywhere where we often see the same groups of parents, and not have a way to clear the air. 12 and 13 month olds are running around the room in circles, and Maya (21 months) bounces in the middle and laughs, but she doesn't move (unless the door is left open, and then she crawls with lightening speed). I'm sure people wonder. But I have no words to break the ice with . . . at least no easy ones. And I'm not going to launch into a whole "Oh she has delays" speech. I just need a soundbite, something that shows that she's different, I know it, we're able to laugh at ourselves and take things in stride and with grace, and let's move on to chat about something more fun. I'm bite-less.

Anyway, I've realized that some people might feel like they've missed the announcement. Like, wait, I heard Maya is getting a trillion therapies a week---what's wrong with her? Did Dana ever tell you? But there's just been nothing to tell.

Suddenly, now, I can't do the pinballing. I'm so tired of it. So I'm owning the label "special needs" which I really didn't feel comfortable with until last week. I thought that label should be saved for kids who really had special needs, not silly Maya, and then Dave said "Um, she gets like 12 therapies a week, that's special needs". Yeah, I guess so----it doesn't bum me out, I just didn't want to take the label and use it in a "oh, so sad for me, my kid has special needs" kind of way.

So I'm boxing up as much denial as I can, and putting it on a high shelf somewhere, hopefully next to my box of not knowing. I know that I'll still end up looking through both of them from time to time, but they need to be further away. The ambiguity has got to go for now, I need to be in a making-peace-and-moving-on place. And I think I'm getting really close to there.

So the goal of all of this, besides clearing my own head, was to clear the air about where Maya is, and also to let people in a little. I tend to be fairly dry most of the time (in case you haven't noticed), but maybe it's helpful to come clean once in a while.

20 comments:

grandma said...

as proud as i am of maya and as much as i love her, for now, i am a little more proud of you and love you just a little more.i am honored to be your mom and i love you very much!!!!

lisa said...

delayed or not, she's still the happiest little girl i've ever seen. anything we can do, any time of day you know i'm here.

kris said...

All the photos are so sweet, D! Maya is learning so much. You and Dave are handling everything that comes your way with incredible grace and humor, which means that no matter what Maya's special needs are in the years to come, she will handle them with grace and humor too.

See you soon!

Aunt Lori said...

You are a wonderful mother and Maya is so lucky to have you. There was an interesting article about the very same thing in the WSJ this week. I will forward it to David since I don't have your email address. Brooke and Sammy are looking forward to seeing their cousin next weekend...and eating at Peter Lugars!!! xoxo

Dana said...

Thanks, all.

Lori-We saw that article! Crazy! Actually, then I wrote to the author and learned about an interesting organization, too. I need to update here about it all.

See you guys Friday!

anne said...

Thanks Dana for such a truly touching and honest posting. Maya is so lucky to have parents like you and David - if anyone can make a happy life for her, it is both of you.

Alison said...

Oh how I understand each and every emotion you feel. We are closer to a diagnosis for Andrew but will likely never have a name and, if we ever do, it will likely be a new disease not yet known to man. Hang in there!

Jenny said...

You know I think all of us in this situation go through the steps you speak of. It was about when my Katy was Maya's age when I began to realize the same thing as you, that Katy was indeed a special needs child. I was still reeling from the realization that her older brother was autistic, it seemed so overwhelming. I then realized that it really didn't change anything, she was still the same little girl that I had given birth to, my little boy was still the same little boy. My daughter is 6 years and 4 months old and we still don't have a diagnosis, I like to say she has Katy-bug syndrome and leave it at that. I bounce between a desperate search for answers and total acceptance of who God created her to be. I look at syndromes all the time and I wonder if we will ever know, I want to know on one hand and on the other I accept our life. Some of the syndromes that are possibilities for Katy have medical problems that go along with them that need monitoring and investigating, so for that reason I really would like to know so we can look out for those medical problems. I feel so confused and bewildered at times.

Cristina said...

Just found your blog because we're looking at potential therapy dog for my 2.5 year-old son. And, I have to empathize because the lack of diagnosis has worn me down a bit too--the not knowing is probably more stressful than knowing! Plus a sound bite would just make life easier. No wonder I am going gray and you're losing hair! :) (Coincidentally, alopecia runs in my family if you ever want to talk to someone about it. My mom had areata during all her pregnancies and my sister has universalis.) Anywho, really just wanted to say Maya is cute beyond words, Parker is a doll, and they are adorable together! And of course, you and Dave are awesome parents. :) Best of luck with everything!

Jaymi said...

Dana,
I came across this blog post on a recent posting from the SWAN yahoo group. I want to thank you for your words. You have summed up how I have been feeling about my daughter (Sammie- 3 yrs) and our situation. It is so hard to find someone who "gets it". And because you live it, you do. I sent this post to my family and close friends and told them, "imagine this is me talking about Sammie". So, thank you for allowing me to share my feelings, through your words. You are a strong mommy!

Dana said...

Jenny, I'm sorry that I'm so late in responding here, somehow I overlooked the newer comments. Thanks for sharing your story---I'm not sure if I can imagine having 2 children with special needs (which is why Maya is still an only child, for now anyway!). I smiled at your description of "Katy-bug" syndrome. I imagine that I'll go through the same thing that you described----times of really wanting to know, interspersed with periods of not caring very much :)

Christina---Thanks for the compliments on my crew :) Feel free to email me directly (uncommonfeedback@gmail.com) if you have any questions about working with dogs that I might be able to help with.

Jaymi---I'm really glad that you found this post, and hope that it helps your family to identify more with some of the stuff that you're going through :)

Cheryl said...

I know exactly how you feel. The not knowing, the negative or normal tests yet still my Ally has the "diagnosis" global developmental delay. I did wonder and wonder what would her future be, how will she do in school, etc. With a "normal" child you can kind of imagine and dream what that child may achieve given the right set of morals and values. With Ally it is different. She is now 9 and just had further testing through the school including IQ testing. So now her "label" or diagnosis is Mild Mental Retardation. Even though in the back of my mind (I am a Registered Nurse) I knew that would be her diagnosis it was so very hard to hear and yet I still really did not want to hear it Global Developmental Delay sounds better. It a diagnosis that has such a negative connotation attached to it.
I guess now we as her parents can kind of know what her future may bring, how we need to prepare ourselves, how we need to prepare for her and what her sister may need to do.
But for the most part we go day by day. We make sure Ally is surrounded by those who love her dearly and treat her equally. Unfortunately, that excludes some extended family members. We make sure her needs are met at school. she continues to progress. She is always happy and has a smile with 2 big dimples that would melt anyone's heart. She is busy. She loves to play with her dollies, swing on her swingset, ride her bike. We encourage her to do what she wants and try and try again.
However, it is a bit more work as parents when compared to making sure our older daughter's needs are met. Dealing with appointments, the school, IEP's it is exhausting, mentally draining but we are her best advocates.
The terms special needs, the special bus and I could go on and on.....I don't like them but I have learned to live with those words knowing we are giving our daughter everything she needs. She does fill our hearts with joy...she is happy, she has what she needs, she is thriving, and right now I guess that is what matters most. Cheryl

Margy and Jesse said...

With my first child we had a diagnosis from birth, but were still left asking all the same questions you are. With my baby, we didn't have a diagnosis until she was 6 months and after that it was very straight-forward and clear on how she would progress (as compared to my first).

Either way, you just never know what the future will hold.

Keep your head up Dana, I hope your family finds some answers soon.

Angela said...

I'm glad you have this blog. Although my baby has had his DS diagnosis from birth, I struggle all the time with pinging around the grief matrix- 16 months now. Even in the spectrum of DS, my little guy is tiny and developing slowly. I struggle with people in public saying how cute he is and then wanting to know how old he is. I used to lie and say he was (insert developmental approximate age). Now I say, he's much older than he looks and tell his age. I don't know when I'll get used to it.

Estelle said...

We have a diagnosis but our daughter is alone in her box, there is no other kid that we know like her. At the end of the day, when you exit the airport, I do not even feel like justifying the various delays. I am too proud of her achievements and once you do leave the airport, special needs is just the new normal when you only have one child like ours, so why justify?

Dana said...

Estelle, I'm unclear on what you mean about "justifying" . . .

It's funny to look back and read this now . . . only a year ago, but a whole different world. I was really unsure about taking the "special needs" label and applying it to our situation . . . I felt like it would be almost be like stealing it from people whose kids *really* had special needs. I was so unsure about putting my toes in the water. :)

Lady Esther said...

It's hard and when you look at a chart of what a normal child is suppose to do at a particular age the deficits hit you smack in the face. I am here with you. I understand. I wish I had more special parents to connect with. I'm an online support group junkie. Hopefully to connect face to face with more people. Blessings to you and yours. Esther

Gail said...

My lengthy career as an educator has been dedicated mostly to teaching gifted children.I did spend two years teaching special needs children. One of the most brilliant youngsters I ever taught never spoke a single word until age 4. His brain was busy working on other things. I have seen this situation several other times. And what's normal anyway? I'll take a smile or a hug and then worry about talking!
Gail

Cheri said...

I am new to your Blog but I wanted to let you know it has touched me deeply. And brought me to tears on several occasions, as I read through some very intimate and personal stories of both courage and frustration. I want you to know I too have been dealing with similar struggles. I have an 11 year old boy that has many diagnosis's ASD, ADHD,GERD Hearing loss, FTT, ID, to name a few and at the root of it all a mysterious genetic deletion that is so rare it doesn't even have a name. 7q11.22(del) Whoo hoo 10 years of specialists and thousands of dollars, hundreds if not thousands of hours of therapy and finally we get a real medically based diagnosis, you know something on paper that you can hold read and touch, the catch.... to be told it is so rare they know very little about it but it fits all of your son's symptoms. He is on a very short list of a handful of kids with it oldest is in twenties. So sometimes even when you get the answer it isn't helpful. That answer can even at times bring more questions then it answers. Keep writing these stories Dana, they really do help!! They let mom's like me know they aren't alone with a child that has a mysterious or elusive disease. It is so isolating at times because what book do you read? What support group do you join? When no one else has ever heard of the problems your child has. Thank you so much for sharing your stories. I really mean that from the bottome of my heart.

Bean said...

Hi... this is probably a very uneducated question, but I'll ask it anyway. Watching the videos you've posted of Maya, and reading about her delays, wouldn't she fall under the diagnosis of cerebral palsy?