A Moment of Peace

Today Tom and took the kids to IKEA (if you have one nearby I highly recommend it! The prices are great and you can get a bacon, egg & pancake breakfast for around $2!) Anyway, on the way back I asked Tom to drop the kids and I off at a park near our place. We were the only ones there. It was a cool fall day, the leaves were falling off the trees and I could hear distant church bells ringing. The kids were contentedly playing in the sand and I felt my whole body relax. It truly was a moment of peace.

The Latest

Hi all. Forgive my not writing of-late. Life seems to get very busy with the good, the bad and the ugly! We had a lovely vacation with family (see Tom's blog at www.narrowridge.blogspot.com for pics. I'm quite computer illiterate so I leave the pics to him!) We went to MI to meet our new nephew & see Tom's sis, our brother-in-law & niece. And then we swung by Chicago to visit my aunt, uncle & cousins. Had a great time visiting with family and soaking in the sun at the beach in downtown Chicago. What fun!

Now to the not so fun parts...as you all know Ian had tubes put in last month and then had an ABR done earlier this month to test & see how well they were working. Not well, were the results! Merde! (That's sh_ t, in French!) So the fluid in Ian's ears is not the only problem, it's nerve damage. So, hearing aids were the next step. So the day after we returned from vacation the kids and I headed out to get hearing aids. Four and a half hours later Ian had his hearing aids in place and working very well for him! It's amazing what they can do these days! (By the way Arnold Palmer was sitting in the seat next to us getting his hearing aids put in!)

What Now!?!

Yesterday I told my Mom that maybe I should just stop going to the doctor, then I wouldn't get any more bad news! Yesterday Ian and I spent a better part of the day (10:45am-5:30pm) at the ENT and then at the hospital. We had an ABR done, aka the sleep test. I'm sure most of you are well versed in doc lingo, but for those of you lucky enough not to be I'll explain what an ABR is. An ABR is a test that measures the brain's responses to noises when an individual is asleep. Ian did really well with the sleep deprivation (no a.m. nap, so he'd be sleepy for the test and no food 8 hours prior to the test). The thing he didn't like was the yucky tasting sedative they had to give him, which they had to administer very slowly with a needless syringe so he wouldn't aspirate. He screamed bloody murder! So anyway, it all went smoothly after he'd fallen asleep, which was pretty quickly. So, the long and the short of it is that Ian has mild to moderate hearing loss. The audiologist isn't sure why he's had the hearing loss. He passed his newborn hearing test just fine. It could be the blasted Ds. So...this means our little guy has to get hearing aids. Truth be told I was yelling at God inside my head when I got the news, "Why God? Why has my sweet, little Ian had to go though so much suffering in his small life? It's just not fair."

Jenny

The other day Silvi and I took a walk to downtown Linden Hills (not even a block away, I love where we live!). We popped into Sebastian Joe's for an ice cream. As we were leaving I saw a lady walking with another young lady into Bibelot (a fun, girly kind of shop). I noticed that the young lady only slightly looked like she had Down Syndrome. I followed them into the store even though I had not intended on going in previously. Ok, so I've kind of gotten a little bolder in my old age...I observed the two women as they shopped. When the older lady was separated from the younger and went up to pay I walked up to her. I asked, "Is that your daughter?", "No, actually she's my niece", she said. I then asked, "Does she have Down Syndrome?". Her smile faded as I asked the question. "Yes, she does.", was her response. I then said, "My son has Down Syndrome too." She immediately stepped out of line, eager to talk to me.

Jenny is 25 years old. She had just moved into a house with some other girls. She graduated from High School and reads such books as Hannah Montana. Now this part really amazed me, Jenny has had "0" surgeries, I mean none! I couldn't believe my ears. How wonderful for her and her family. I wish that were the case for my Ian and for all others with Ds.

All Done - for now at least! :0 )

Ian's surgery was a success. The ENT was able to put tubes in BOTH ears. He cried really hard afterwards, we could hear him down the hall before we got to see him after the deed was done. He was white as a sheet when we first saw him. I nursed him right away and the color came back into his cheeks and he was even smiling and laughing with his daddy before we left the hospital. So, we are SO relieved that the surgery is done. The ENT said however that the tubes are so small they may fall out in a couple of months. Therefore we may be able to look forward to doing this all again real soon. Lucky us-NOT! Anyway, just wanted to let you know that our boy is doing just fine and to thank you all for your guidance, thoughts and/or prayers for Ian and our whole family. We really appreciate your kindness and support.

Surgery

I sure appreciate all of your feedback on the tubes subject. I asked Ian's Ped. why exactly we were having tubes put in when no one has ever seen Ian's eardrums and no one knows why he isn't hearing (it was the ENT's suggestion to do tubes). I asked if the surgery is kind of something just to try and see if it works. I asked if an ABR should be done first. He said an ABR would tell us that he is not hearing but not why. Our Ped. then said he wasn't sure why tubes were suggested if the exact cause of the hearing problems has been determined. So, he called the audiology dept. at Children's Hospital. Our Ped. called us back saying that there had been a Tempanogram done in January showing that there is fluid in Ian's ears. So, I am very glad that this surgery is not being done blindly, that there is a concrete problem and hopefully solution to Ian's hearing difficulty. Ian's surgery is on Tues., July 22nd at 11:30. We'd appreciate your thoughts and/or prayers. Thanks for "listening"! We are very grateful to have your support! :0)

Tubes

Just got back from the ENT at Children's Hospital (Minneapolis). It looks like our little guy is going to need tubes after failing four hearing tests. No one has ever seen Ian's ear drums, his ear canals are too small. His ENT said he has never seen canals so small and may not even be able to put a tube in his left ear. I had my suspicions that Ian may need tubes because that seems to be the going trend in our Ds Group, but to actually find out that it's for sure that he does is hard. Our poor, sweet guy has had to endure so much suffering in his small life. It's not fair.

Results

Yesterday we had our end of the school year meeting with Ian's Therapist, Teacher and Service Coordinator. It went well for the most part. I felt they graded Ian a little low in general. I hate the grading system. They pulled out that stupid Hawaii Standards Test (the one that compares Ian to "typical" kids). I said jokingly, "Do I really have to look at that?". The Teacher stiffened ever so slightly then went into this long speech about how it's a good guide and about how well Ian is doing. In my mind I'm saying, "Um, yeah he's doing great, but compared to a regular kid he's NOT doing that great." She then goes into detail about where Ian is at on that blasted test. Hello! I just said I didn't want to hear how Ian is doing compared to "typical" kids.

At any rate, the conclusion of the meeting was that Ian is doing well in the area of PT. He is, for the most part, doing what "typical" kids are doing at his age and therefore his therapy will be reduced from twice a month to once a month. That sounds good to me. I tried to suggest that Ian's Teacher also come once a month along with the PT, but the Teacher wasn't having it. She said that 9-12 months is a crucial time in speech development and she wants to keep coming every other week. Nuts! She's the one who is long winded and I would have preferred that she come once a month. Ach vell! I guess I'll do what's best for Ian and have her continue coming every other week. Anyhoo, I just thought I'd let y'all know the results of our meeting. I appreciated all your advice on this!

Changes

It's very interesting how things have changed for me in terms of my outlook on Ian's future life. Before Ian was born my dreams for him were that he go to school and someday find a cure for cancer and end world hunger (ok so I'm exaggerating). Now, knowing that Ian has Ds my dreams for him have changed. Now I'm just hoping he can walk, talk and most of all be present/aware of me, my family and others, as well as be able to interact with us. My friend Donna, who also has a boy with Ds, loaned me a book called "You Will Dream New Dreams". The book talks about just what I wrote about. In having a child with Ds your outlook on life changes a whole lot, as does the outlook of your child's (and your own) future. While it is very hard to adjust your expectations the love of your treasured little one and his/her love for you helps you through.

Thank You! ;0 )

Thank you all SO much for your wonderful advice! I very much appreciate all of your insights. I also feel very thankful to have your support.

Advice Please

I was wondering if I could get some advice from you lovely people out there who have walked this road before me. In a couple of weeks we are having our Review with the school district on where Ian is at in terms of his progress in therapy. The main goal of this meeting is to determine what his therapy should consist of in terms of frequency etc. Ian's physical therapist has recommended that we switch from an every other week meeting to once a month. She said that Ian is doing so well in terms of strength and flexibility. My thoughts on this are that yes, he is doing well with his strength level but his two cousins who are ten and twelve days younger than Ian are sitting up on their own, Ian is not. Ian also still prefers to keep/turn his head to the right due to torticolis (spelling?) Ian also tested two months behind on the Hawaii Standards Test in the area of fine motor skills (by the way I don't like this test. It compares Ian with typical kids. Well, he's NOT a typical kid. Why should he be compared to one!?! Anyway, you can tell I'm passionate about that!)

To be honest part of me would welcome a once a month visit from Ian's team of therapists. They come on Monday mornings, ugh! Mondays are not good for me. I'd rather stay in my pj's all morning than clean the house for a therapy session! Also, one of the therapists isn't that great with Silvi. Silvi has said numerous times, "I don't like her!", when I mention that she is coming over. The lady is also very long winded!

The main point is that I want to do what is best for Ian. I'm just not sure what that is at this point. Any advice you could give me would be most welcome. Thanks!

Solitude Takes Discipline

Henri Nouwen is one of my favorite writers. I have read a few books by him; The Genesee Diary, Turn My Mourning Into Dancing and The Inner Voice of Love. I find his books quietly hopeful, as well as full of grace. I've found a phrase he wrote very helpful to remember when I take my alone time down at "our" coffee shop; "solitude takes discipline". When I find myself sitting there with my hot chocolate and journal it is easy for me to get up and check my e-mails on the coffee shop's computer or read a magazine. I do find however that I get a lot more out of the experience if I encourage myself to go deeper, to write in my journal. It does take discipline. (Don't get me wrong, I very much enjoy the times I do choose to chill out and read a mag and sip a latte!)

Bummer!

I am disappointed. I googled New Amsterdam after I tried watching it last night and it had vanished from the airwaves. It turns out that the show has been canceled. I'm so bummed!

New Amsterdam

I've been watching a great show on www.hulu.com (this site is where you can watch TV episodes, current and not so current). New Amsterdam is about John Amsterdam who came to the United States in the 1600's from Europe. He saved a squaw from the bullet of a fell0w European and took the bullet for himself. In return the squaw blessed him or cursed him, depending on how you look at it, with immortality. The only way he can attain his mortality again is if he finds the "one" woman he is to join souls with.

John is now 400 years old but looks about 35. He is an NYPD homicide detective living in the same place his ship sailed into in the 1600's, only now it's the year 2008. In one of my favorite episodes John is sent to the scene of a murder and when he looks at the man lying on the floor covered in blood he sees a young man who looks very much like his son who he had had 150 years ago. It turns out that the man IS actually his great, great grandson. John goes to the funeral and sees all of his family, but of course can't tell them that they are indeed family. At the funeral in the relatives home, John looks up on the wall and sees a painting of a beautiful woman, a painting that HE had painted a long time ago.

I find this show intriguing. It has so many elements that I like, murder mystery, romance, history, regret, remorse, family, love, hope, forgiveness, honesty and deception. I think it's one of the best stories I've come across in a long time. Check it out, if you're so inclined. (The show also airs currently on TV on Monday nights at 8pm Central time on Fox Channel 9).

Apologies

Apologies for not writing more. I guess I haven't written much because things have been going so well lately. As you may have noticed from my previous entries, I mostly use my blog to vent and seek out guidance from you wise souls out there! But, Spring is now here, Ian is doing very well, as is Silvi and amazingly Tom and I have been able to say more than two words in a row to each other on a couple of occasions! ;0)

I want to take this opportunity to thank all of you for helping me through the dark Winter (literally and figuratively speaking). Your kind and encouraging words carried me through and I so appreciate your thoughtfulness.

Wishing you all the best,
Annie

The Church

I noticed on my post about Wally that I showed the "church" in a negative light. I want to let you know that that was not the case for us. People from Tom's parent's church and from the church I provide childcare at were wonderful to us when Ian was born. We were very touched by the meals they brought, the hospital visits and gifts they gave us. In fact their kindness drew me back to the church after a LONG hiatus.

Wally

It has been wondered, not proved, that Down Syndrome may be passed on genetically. So I called my Grandfather and asked him to tell me a little more about his nephew, Wally. Wally was my second cousin who had Down Syndrome. Here is his sad and happy story.

My great Uncle Walter and Aunt Ada Hinebaugh had three daughters and longed for a son. So at the age of 42 Aunt Ada had Wally. When the news of his Down Syndrome got to their very conservative church tragically they were asked to leave the congregation. I can't imagine the pain they must have felt; After the news of their sweet little baby having Downs and then losing their friends, their whole community and what should have been their support and comfort must have been more than they could bear. Aunt Ada was in school at the time of Wally's birth. She decided to change her major to Special Education. After graduating she started many programs for children with special needs and ended up in "Who's Who In America"!

When Wally was young there were no therapists that would come and work with your child at home. Because of this Walter and Ada decided that it was best for Wally to live in a group home that would provide him with the services that he needed. Wally enjoyed it there and would even want to return to the group home after Christmases and Summers spent at his parent's place. He found life outside of the group home too fast-paced.

Wally was able to speak and even learned how to play the guitar until later in life. One day at the group home he was encouraged by one of the workers there to get some fresh air out on a second story balcony. Unfortunately while out there he got locked out. In trying to get back into the building he fell off the balcony. So very sadly Wally spent the remainder of his days as a quadriplegic. Wally lived until the age of fifty-five.

"I Don't Like Him"

Silvi, Ian and I went over to a friend's house yesterday to welcome her new baby boy. While we were there I noticed her three year old studying Ian's face real intently. He then said, "I don't like him." I couldn't believe it. I just froze. He then continued to play, but returned a few moments later to repeat, "I don't like him". I felt like crying, but didn't. I instead asked, "Why?". The boy's sweet Mom said to him, "Well, I like him", Silvi chimed in and said the same thing, as did I.


Note: I've noticed that my Blog entries of-late have been kind of downers. I promise my next entry will be a lighthearted one! ;0)

Don't Look Back

We went to a kids train store today for story time. There were tons of kids, most of them sitting and enjoying the story, but not my active Silvi. She always needs to be on the go exploring, just like her Dad! Anyhoo, as I was following Silvi around I was holding Ian facing behind me. As I walked toward a woman she saw Ian's little body and commented, "How cute". I smiled at her as I passed her but didn't look back to see the expression on her face when she saw that my boy has Ds. It's hard because I want everyone to love Ian just as I do. He fills my heart with such joy, such love. It hurts when others can't see him the way I do.

Breathe

Life just seems to build to a crescendo sometimes and I then dig in my heels, grit my teeth and keep going. Maybe it's my conservative Christian upbringing that leads me to this modus operandi. Why do I keep going when what I really need to do is to step out of the "running stream" and STOP and take a deep breath. What breathes life back into me is being alone. It's amazing what one hour by myself can do for me. I feel physically lighter. I'm able to smile freely again, to give again to my husband, my daughter and my son. I just NEED to remind myself to take that time out that is so vital for myself and my relationships.

I Punched The Car Twice!

I still have my boxing gloves on after last night's rounds with Silvi. Here's what lead up to the match...It took a long time to convince Silvi to go to the monthly Ds group last night. We're new there and she hasn't spent much time at all in groups without Mommy and Daddy present. Finally she agreed to go right when Ian and I were heading out the door. Tom had to stay home to write a script (yeah right! ;0) Love you Babe!) So, I was a single Mom taking the kids to the group. I felt great success at getting the two kids to go. I feel it is very good for Ian to be around other kids with Ds and for Silvi as well. I also think it is helpful for Silvi to get to know other kids with siblings with Ds.

We finally got to the group after the 15 minute scramble to get coats on and get out the door, into the car, into the stroller, into the building, yada, yada, yada. So we made it! Then the tears came from Silvi, not just tears, but desperation. I hated leaving her, but I'd introduced her again to the teachers there and told her that I'd check on her in a bit.

One of the other Mom's had kindly taken Ian into the room next door where the parents meet. Ian was making that loud noise he makes when upset. But I couldn't attend to him quite yet, I had to get the brownies out. I somehow was the only person who brought treats last night. I thought I'd then check on Silvi, so I peeked in the playroom only to have the teacher tell me that Silvi needed to come with me; She'd been sobbing the whole time, poor girl. So we headed back into the parent room, I got her settled on the floor only to then think that she'll need some books to occupy her. So we headed back into the kid's room, got books, got her settled onto the floor next to me, grabbed Ian and started feeding him some pears. He let out his noise again after a few bites (he's not that into food yet). I then needed to figure out what to do because I was sitting next to a fellow and didn't feel comfortable nursing in front of the group. So we yet again had to get up in the midst of the group and relocate to the far side of the room behind a bookcase which partitioned the room. I commence nursing Ian as Silvi got increasingly bored and was getting into anything she can, yelling "Mom look at me!". She actually stuck her finger in an electric pencil sharpener behind me. Luckily it didn't nip off her fingertip!

Needless to say things were not going well and they were only going to get worse! The group finished up. The teachers always usher us out of the building quickly. I guess we are only allowed to be in the school for an alloted time or something. So I felt pressure to get out of there, but, the brownies were in the parent room, the diaper bag at the other end of the room, our coats and stroller by the lockers in the hall and Silvi was wandering around all three places. Luckily another kind Mom gathered all our things for us and we were ready to go...or so I thought. We headed towards the elevator and Silvi took off full tilt down another LONG hallway. I ran after her. My girl is such a fast runner, I had to run my fastest to catch her. By the time I caught up with her I was LIVID! I picked her up and told her that I would take away her pacifier until we got home. Her pacy is her most prized posession! We then walked back to the elevator and strapped her in the stroller with Ian (luckily the nice Mom had stayed with Ian this whole time). Silvi, of course, kicked off her shoes and took off the jacket we'd already put on her.

By this time we were the last to leave the school. We finally made it to the car and I was feeling that I had triumphed over my high-spirited daughter. I am the Mom after all! My glory was short-lived. I had to carry Silvi into her carseat because she had no shoes on. The car next to us was parked too close and I couldn't open the door all the way. So as I was in the process of putting Silvi in her carseat she banged her upper lip on the car door. Disaster! Her lip split and bled. I felt terrible for her, but I also felt terrible that I had lost the battle. I caved and gave her her pacifier. She had won. I slammed the door shut and punch the side of the car twice! I was SO frustrated! I got Ian and myself into the car and tore off down the road. I drove home as fast as I could. We finally got inside the house. Tom could see on my face that things did NOT go well. (He had cleaned the house while the kids and I were gone knowing the night was not going to be a fun one for me. He's a sweetheart that way!) After we got the kids down to bed he asked me about the night. I just repeated over and over, "I don't want to talk about it! (I did eventually cave and told him the story I just told you!)

The Debate

I thought I'd write about a subject that I haven't quite made my mind up about yet. I have continued to reflect upon what transpired at the baby shower I went to a couple of weeks ago. I have absorbed your kind as well as motivating comments, but to be truthful, I still have not quite decided what tract I am going to take when introducing my Ian to strangers.

Some have said that I need to be bold, to walk into the room full of new people and say, "This is my son Ian. He has Down syndrome." But at the same time I don't think I would walk into a room of strangers and announce that my son has terrible acne when introducing him (much like I had as a teenager!). Others have said that they would have done just as I did and say, "This is my son Ian" and leave it at that. I for sure want to be an advocate for my son. I want to show the world that I love him ever so much just as he is, but I am still grappling with how best to do that.

Not For The Squeamish...a funny story!

So Silvi, our two year old daughter, got into my tampon box this morning. Trying to be open about these things I showed her the inner workings of the thing. A few minutes later she ran back into the room with the tampon around her wrist saying, "It's a bracelet, it's a bracelet!". I laughed so hard. I returned to my e-mail writing only to look back at her a couple of minutes later as she was using two tampons as drumsticks and using the cat as the drum! What a funny girl she is!!!

Well...That Was Awkward!

Yesterday an English friend and I threw a baby shower for a mutual friend. The way it turned out though was that no others from our circle of friends were able to make it. Only the guest of honor's friends, who we'd never met before, were able to come. So, everyone arrives whilst my little Ian is sleeping in his car seat in a distant corner of the room. While we were all making introductions and making small talk Ian would periodically stir. He would lift an arm or a leg and let out those cute noises he makes. The guests would make comments like, "oh, how sweet", or "I love it when babies make those darling noises". All the while I respond with slightly uncomfortable smiles and nods, knowing that when Ian finally does wake up and joins us, the ladies are going to have a situation they weren't expecting; My son has Down syndrome.

Ian finally wakes and I bring him to the circle of "friends". As I set him on my lap I say to the ladies "This is Ian", but I do not look in their eyes to see the reaction they have to his not being a "typical" child. I love my son beyond words, but I am SO ashamed to say that I am also very uncomfortable making this introduction. The ladies say "hi Ian". Absent of course were the freely expressed "Oh how cute" when a new baby is brought into a room. I think I may have heard a strained "how sweet" above the din of thoughts rushing through my head. Conversation starts up again about other subjects.

I've heard about our kids with Ds doing inappropriate things in social situations, but I thought that wasn't something I was going to need to deal with until a year or so down the road. Surprise! Yesterday was the day it began. Ian has this noise that he makes when he is uncomfortable in some way. It is kind of a grunt mixed with a squeal. It is not the most pleasant sound. So, yesterday, for whatever reason, he really went for it. It seemed like his grunt/squeal was three times as loud as normal, or did it just seem that way because I was so uncomfortable with the situation? He did his "thing" and the room immediately fell silent. I made some off-handed comment like "oh my! What's up, buddy?" while dying a thousand deaths inside.

During the baby shower there were no desperate pleas to hold my baby like there would have been had Ian been a "typical" baby and there was no peppering me with questions about what Ian is up to. That's hard to take because in our eyes he is SO sweet and SO fun and SO precious, that it's difficult when people have a hard time seeing past his challenges to "see" him.

NORMAL!?!

This evening I was looking through one of those parenting magazines and some choice words fell from my lips before even realizing it. All I read of the article was the title and that was enough to make me close the mag. The title was, "What Normal Babies Should Be Doing". I may be a little sensitive, but who can blame me with having a sweet little baby at home with Down syndrome. The word "normal" has changed for me in the last five months. Normal to me now is a gazillion doc. visits resulting in failed hearing tests, a failed vision test and the so-called "routine" heart surgery that our son Ian underwent. "Normal" has become subjective to me and to many others with children with special needs.

James Denton

Hi Babe,

Like the pic I chose for my blog? For those of you visiting us for the first time this picture is of me and our daughter, Silvi, but NOT of my husband! That's James Denton from Desperate Housewives. I just put it on here to harass my husband, Tom!!! ;0) Happy Valentine's Day Babe!!!

Let's Begin!

My husband Tom has been urging me for ages to start a blog. He actually set this blog up for me back in October. As you can see I am just now getting around to actually writing something! I assume that most of you are visiting my blog because you have come across his, www.narrowridge.blogspot.com. He's such a good writer and has a fun and often dark sense of humor! But that's why we like him! (love you, Babe!) I'm happy to say that I've kind of gotten to know some of you from reading your comments at narrowridge. All that to say, welcome to my blog! I'm glad you stopped by. Now, if only I could think of something to write! ;0)