Wednesday, October 31, 2012

Day 31

And here we are at the end of the 31 For 21 Challenge.  It's not been easy to find the time, or energy, some nights, but it's a challenge for a reason and a good reason at that.  I will of course continue to blog so this is by no means the end of it all, just the daily challenge.  And in closing, I'd like to share one more guest post.  This one is from yet ANOTHER doing aunt and who also happens to be Tera's Odd Mother.  Thank you all for your continued support, I appreciate every comment and "like" on Facebook.  Oh yeah, and Happy Halloween!

I always knew I wanted to be an aunt. Kids are great and often the closest thing I can relate to. Thus, there is nothing better than kids I also happen to be related to. When my sister told me she was pregnant, I, of course, went berserk with excitement. I’m not known for my propriety, so the first question I asked was “Am I going to be the Godmother!?!”  My adoring older sister slyly smiled and pretended to hesitate when she said “yes”. For nine whole months we “patiently” waited for the little darling’s arrival. When I found out it was a girl, it was only fitting. I have three sisters, so girls are just my forte. And so it was settled; this little girl and I were going to have an unbreakable bond for the rest of my life.

I’m not going to pretend I wasn’t completely shocked and dismayed when I heard Tera’s diagnosis. I had already fallen in love with her and it caught me off guard. It hit me hard. It hit us all hard. I never told my sister, but there was something about the day I first met my Sweet Girl that seemed off to me and then it made sense why. The week that followed was filled with sadness...acceptance…and then COMPLETE JOY. The absolute excitement that I eventually felt consumes me to this day. Here we were, presented with this amazing opportunity to take the road less traveled. The things we were going to learn from this already inspiring little girl were endless. But it wasn’t just that. She is my niece. She is my flesh and blood, and all that matters is that she is happy. Period. I will do whatever, whenever, to make sure she stays that way. 

 I am still nearly brought to tears just looking at her. I am 100% wrapped around her perfect little fingers. And since I was selected as her “Odd Mother”, I am responsible for taking notes from her parents. I may dote and entertain, but I also strive to teach and discipline. I don’t take my role for granted. I know what it means to take this seriously. I won’t resign from my role when Tera turns 18. I am there for her for as long as I am around.  

When writing this post, we were asked to answer some pretty tough questions about how Tera has affected our lives. Honestly, the only thing I can think about is that I love that little girl more than I knew was possible. I look forward to every split second I get to spend with her and I get butterflies in my stomach at the anticipation of the next visit. She is amazing in every way and I am blessed to be her aunt and Odd Mother. I look forward to the possibility of her Uncle Jojee and me raising our kids by her side one day.

Tuesday, October 30, 2012

Day 30

As the month is winding down quickly here I had an idea for a post for tonight but I figured that may be a better way to end the month and I got another family submission today.  In hindsight I wish I would have spread them out so that each person had their own post, but I wasn't sure how many I would get.  

I would like to throw out there that if anybody that reads this ever has any interest in doing a guest post, I would absolutely love to have you.  I'm guessing there is a chance that I may get one or two more family responses still and I will share those if I get them, but if anyone else has any type of post they'd like me to share (and it doesn't have to be about Tera), please, please, please let me know.  

This is from Tera's other grandma (yet another one of her adoring fans).

How has Tera's diagnosis changed me or my way of thinking?
 Not sure her "diagnosis" has changed me or my way of thinking but she sure has.  I never thought being a grandparent would have this effect on me.  Whenever I'm around her or even just think about her I can't help but smile. She is amazing.
 
 What am I most proud of her for so far?
 Just being her.  She is one determined little girl.  Once she gets something she just runs with it. 
 
What were my initial worries???
 There were so many.  When Tom first called we just sat on the floor and cried.  Then I thought about all the children I had worked with who had Down Syndrome and I was confused.  Would she be as challenged as some of the students I knew or would she be able to get along just fine.  Then we got back home and I laid eyes on her for the first time.  All I can say is that all my initial worries seemed to disappear and I was in love.  I was scared about the physical challenges she was going through and about the challenges her mom and dad were facing but for some reason I felt sure that she would be just fine.
 
How has she changed the family?
 For one thing she seems to be the first thing we all ask about.  "Have you seen Tera lately?"  "How is Tera doing?" 
The other change is she has brought us all a lot closer.  Tom & Michael have always been close but not like now.  I know Melissa and Cathy were always good friends but not like now.  She seems to be a love magnet and everyone that loves her have opened their hearts to the rest of us.
 
What do I look forward to in the future?
 So many things.  Right now it's her first word.  It's kind of hard to figure out what her grunts mean even when she is doing so well with her signing.  I look forward to watching her in her school programs. Watching her learn to swim, ride a bike, run, hit a baseball, play guitar with her papou, play video games with her uncle Mikey, baking cookies with me and my daughers-in-law, and so much more.  Mostly I look forward to her having a happy future.  Her being able to do what ever she wants.
 
Anything else?
 I am so amazed at how Tera lights up my life.  All she has to do is give me one of her smiles and I just melt.  Sorry Tom and Melissa but I'm going to spoil her rotten.



Monday, October 29, 2012

Day 29

So I realized after all the chaos of my broken family this weekend that I never did Tera's 20 month update (not that I haven't shared most of it in the past month anyway), but it's not going to happen tonight so I'll try and do it in the next day or two.

Tonight's post is from another one of Tera's doting aunts.  And again I repeat that she will never lack for love or attention from her family.


How has Tera's diagnosis changed you or your way of thinking?
It has reaffirmed my belief that love is the most wonderful thing in the world and love will get you through anything.  Also I think of other people's feelings and situations much more.  I got so mad at you guys the first day in the hospital when the nurse came in and talked about the "heart issue and test" and you didn't react or tell us anything.  I went in the car and cursed you out.  I had no idea what you guys were going through.

What are you most proud of her so far for?
Her determination in everything she does.

What were your initial thoughts/fears/worries, etc when she was born and you found out she had DS?
I sobbed because I compared her to every other special needs child as a teacher I have encountered.  I thought that all I would see in her was Down Syndrome.  Two days later when I held her again all I saw was a little baby that I loved.  That's all I still see. I now also see special education children differently at work because I  see their families at home who love them just like we love Tera.

Do you think she has changed our family and if so, how?
She has brought everyone closer together. She makes everyone so happy!

What are you most looking forward to in the future?
Watching her learn and discover new things and hopefully spend a lot of time with her.  I want her to visit us and just be nothing but happy.  Also we are going to visit the kitties at Save-A-Pet together, watch WWE and a lot of football while eating salamis and deviled eggs and go to Door County as a family.  I don't even care if we are drinking IPA's when she is old enough.:)

Anything else you'd like to include that you want to share.
I love Tera.

Sunday, October 28, 2012

Day 28

Yes I copped out last night. It was probably the worst afternoon/evening of teething Tera has had yet so that in combination with a visit from Tera's aunt and uncle made for a missed post from me.  And after the afternoon/evening we'd had, it probably wouldn't have been anything worthwhile anyway.

I want to save the guest post response I have in mind for tomorrow because I think Sunday posts sometimes get missed in the Sunday night/Monday morning shuffle and those posts are important to me this month because I want to highlight and give credit to all of Tera's amazing and loving family and biggest supporters.

Yesterday we had the privilege of attending the Gigi's Halloween Party and I'm so glad we were able to make it.  After having to stay home with Tera on Friday I wasn't sure if we'd be able to go but as more time passed the more it seemed evident that her biggest issue still is her teeth we hoped we'd be able to at at least show up for a little while.  All the kids were dressed up, although there was only one Frankenstein, and we were able to catch up with some families we haven't seen in a while and just watch the kids be kids.

This washcloth and Motrin were the only things
providing Tera with any relief the past few days
After that we made the drive out to my sister's to visit one of her two best friends and her husband who were visiting from New York for my sister's birthday and who had never met Tera.  I had been hoping we'd be able to make it over there to see them because her friend isn't in town often and I always enjoy being able to introduce Tera to new people because I feel that she, like every other child with DS, is an ambassador for their community.  I really feel that the more that people can make a connection with an individual with DS, the more likely they are to put aside any misconceptions and really understand what DS means and what it doesn't mean.  I never mind answering people's questions because it means there is one more person who knows the facts and not the myths of DS.

I oftentimes feel that when I'm writing these posts I don't have enough experience to fill 31 days worth of information, but as each day passes we have more and more experience and knowledge of what this means to us.  Right now I know that the slowness with which their teeth come in, and the order that makes it hard to predict and know which ones are coming in, makes it excruciating for my little girl who can normally handle pain and discomfort better than the average adult.  I know that when we're with our family and friends, she is just Tera and nothing more or less.

And I know for tonight, I'm exhausted and done.


Friday, October 26, 2012

Day 26

Another short post:

Today Tera stayed home sick and after a week of on and off fevers, throwing up last weekend, three "off" days at school, general crankiness, and regularly signing "sleep" starting at 6pm most nights for the past two weeks, I finally had to take her to the doctor to find out nothing.  He was as baffled as I was by the symptoms and after ruling out anything respiratory, an ear infection, and a UTI, the only thing we can do is treat her symptoms and keep an eye on her.  

This frustration is about being a parent of any child, not just a special needs child and it shows how our children are children first and special needs after.  It's incredibly difficult to know that your child is uncomfortable and not feeling well and not knowing what to do about it.  To worry that it's something more sinister than just teething but having to wait it out to see if it gets worse or better.  

I'm not worried right now so much as heartbroken that my baby is not feeling well and I can only do so much to help her.  I want my happy, mischievous, energetic girl back.


Thursday, October 25, 2012

Day 25

Tera had a better day at school today, but still a rough night at home.  Our usually energetic, easy going girl is tired, uncomfortable, and just generally not herself.  We will all be happy when this miserable tooth (at least that's our assumption) makes its way through.

Tom and I have been exhausted this week too so I think we're all looking forward to the weekend.  But until then, here's another reflection on Tera.


How has Tera's diagnosis changed you or you way of thinking?

Down Syndrome, What Down Syndrome?

I don't have a clear picture of what I though I would see as I anticipated looking at my granddaughter after I learned of her diagnosis. But I certainly didn't anticipate what I do see now. I guess I initially thought I would somehow see Down Syndrome.  Now I think Down Syndrome, what Down Syndrome?

When Tera and I first make eye contact all I see is her angelic face and that huge "light up my life" smile.  I see a magical twinkle in her eyes and wonder how does she do that? I see a hand reaching out for me to take. And when I pick her up I soon feel that same hand reaching for my mouth and that glee she exhumes when I lightly bit her fingers.  (Yes, she is a little goofy don't forget!) I see that excitement in her face as she takes every step. I see her silly grin as she bangs, strums, or presses her face on my guitar while I'm playing for her. 

All of these visions of her bring me unimaginable joy as I think to myself how special she makes me feel.  And when I take the time to look ahead, I see a future as bright as that incredible smile and then ask myself again, "Down Syndrome, what Down Syndrome?"

 Then Yaya  walks into the room and I'm once again relegated to second fiddle.  


Wednesday, October 24, 2012

Day 24

So here's my interesting Down Syndrome fact for the day:  children with DS tend to get their teeth in late, out of order, and very slowly.  The reason this fact is pertinent today is that teeth seem to be the plague of my daughter's existence this whole week.  Thank goodness for ibuprofen...

Today's post is another collection of responses to my questions.  Enjoy!

Do you think Tera has changed our family and if so, how?

She has definitely changed our family. She has brought more love into the family. When I see her I just have to hold her. I try not to squeeze her too hard, but she is such a good little hugger. She's a constant reminder about what is really important in life - family. Tera has brought so much love into this family, not that it was in short supply before, but now it's even greater. I think that Tera being born into this family has brought more attention to the special needs of kids with DS. We all attend the Gigi's fund raiser. I've told the story to numerous people around the world and they all know someone with DS or someone caring for another with DS. The whole world knows about it, but until it reaches you personally, you never really focus on it. Tera has brought focus to DS in our family.

I think she is special in the sense that she will always be my first grandchild with her extra special qualities and she will need our extra care and love.  From a Mom's perspective she will always be that loving little girl, but having my three girls I can tell you each of you holds a special place in my heart as she will and any other child you may have in the future.

The birth of any child changes a family.  The addition of anyone to a family cannot help but change it.  The important thing is that there is no negative change as a result of Tera's birth and situation.  By that, I mean we are all what we are and always have been with a new situation to negotiate; the same as any new addition.

What are you most looking forward to in the future?

Seeing her get her picture taken every year with or in The Stanley Cup. :) And watching her develop along the way. You know with the parents she has (have I told you how proud I am of her parents?) she will love hockey and she will be competitive in whatever she decides to do.

Watching her grow and reach her milestones, and getting kisses and hugs forever!

Retirement.  But as regards Tera, just seeing how she progresses and interacts with her family and friends.  Also, to see her bitchin' fall away jump shot.  Oh.  And I'm also looking forward to the day when she stops staring at me like that.

More to come tomorrow!



Tuesday, October 23, 2012

Day 23

Today's post is from one of my sisters.  When Tera was born she was one of the few people that I am closest to that we had to tell over the phone about Tera's diagnosis and besides my dad, who was also over the phone, was one of the more difficult things I've had to do.  Calling her at work as a conference call with Tom to tell her I was pregnant, and then calling her that Saturday morning to tell her about Tera's arrival were two of the more exciting moments we've shared as sisters, but that third call was impossibly hard.  What made it hardest is that unlike most everyone else, because she lived out of state, she couldn't see for herself that Tera really would be okay.  She had to wait the longest to see her and hold her and she has been one of her biggest cheerleaders from the very beginning.

I'm so very proud of all my sisters for different reasons, but Lindsay is one that I know Tera will get strength and inspiration from.  She's worked hard for everything she's ever gotten and made it through more than most people should have to experience.  And with all that being said, here are her thoughts on Tera.




I remember when Melissa and Tom called me to tell me the news.  I was outside at work and they were both on the phone and I had no idea what was going on.  Then they said it Melissa was pregnant!  I then of course started screaming (which it was a good thing I was outside) I started telling everyone because I was so excited to become an Aunt.  Then about 8 months later my phone rang very early and it was Melissa and I thought hmmm… this was early and then it clicked she must have delivered my niece!  I remember asking Melissa if she was perfect and she said “pretty much”!  Which I knew she would be.  Not knowing at that time that Melissa and Tom already knew about her diagnosis but didn’t want to say anything right away.  Then a couple days later Melissa called me again and said that she had to tell me something but didn’t want me to worry.  She told me that the Dr told them that Tera had Down Syndrome.  I immediately started crying, trying my hardest not to let Melissa hear it in my voice, I asked if she was going to be ok.  She said yes but she had to stay in the NICU for a little bit but she was ok and she was beautiful.  When you do not know a lot about something and start looking things up about it your fears become much worse (I swear sometimes the Internet is the devil).  I remember reading articles about people with DS are more prone to cancer; heart problems and that they might not be able to function on their own.  I was not only worried for her health because I just wanted her to be healthy and be able to watch her grow without any obstacles but I was worried for Melissa and Tom that they would have to face some challenges in Tera’s life.  Then I started thinking how much this was going to affect the whole family.  Then as time went on and I finally got to meet her I knew this was one amazing little girl she was so small and young but I knew she was going to do some amazing things.  I have so many reasons to be proud of her, I remember being on Skype and her signing for different things and I just couldn’t believe what she was doing and how she was able to communicate and know what she is talking about.  In case you don’t know the dynamic of our family… we have a very interesting family bush.  We have had marriages, children and divorces but we still have been a pretty close bunch.  Never in a million years did I think we could become any closer because again we are a little confusing, then enter Tera!  Not only has she brought the ENTIRE family together she has a very large extended family and fan club here in Charlotte, NC.  I have already been told I may need to rent a venue when she comes down to visit me because she has so many followers and so many people that love, care and support her and they have never met her!  They have never met her parents but the stories and the accomplishments she has already everyone just loves her!  (I might add she already has an arranged marriage with my best friend’s son).  The number one thing I am looking forward to for Tera’s future is what she is going to accomplish and how many great things that she does in her lifetime.  Like I said she has inspired so many people that has never met her and have only seen pictures that the thought of what she can do is just amazing.  Awhile back I was trying to figure out what tattoo I wanted and then it hit me… something for Tera!  Then after speaking with Melissa and Tom my boyfriend and I figured it out.  The Wonder Woman symbol and the DS ribbon.  Josh drew it up and the next day I went and got it done.  It cannot be any more fitting for Tera she is my Wonder Woman and my everything I am proud to show the world how much she means to me.  Whenever someone asks what it is I get to tell them the wonderful story of Tera Melissa.  I wish I could see her more and to see all of her new accomplishments in person but I love I get to Skype with her and at least get to see and talk to her and she will know how much I love her and how proud I am of her.


Monday, October 22, 2012

Day 22

About a week ago I emailed Tera's grandparents and aunts and uncles and asked them several questions related to how Tera has affected and/or changed them.  I'm going to post the responses I've received so far over the next few days and add more as I get them.  Needless to say they all made me tear up in some way or another and I'm excited to share them so everyone knows just how amazing our family is.  Please keep in mind that I asked my family for honesty as it is something that I constantly strive for here.  I have been as honest as possible when describing my fears and emotions and I appreciate that they gave me the same thing.

The first question I asked was how Tera's diagnosis has changed their way of thinking, if at all.
When hearing about our little bundle of joy having special needs I thought about all the people I've seen through the years with Down Syndrome. They always look so happy. Do they know something we don't? Is their difference a blessing in disguise? She is definitely a blessing.

It made me more aware of DS and now that I have had a couple of classes, when given the opportunity I write my papers on the subject.

Frankly, it hasn't.  I'm not sure why.  It could be that I've always truly and seriously considered the possibility that a child of a family member or friend might be born with a challenge and thus to some extent was prepared on some level.  I was more affected by the sadness expressed by everyone else, and greatly proud of the manner in which you and Tom dealt with the situation.  It could also be a result of having grown up with a mentally disabled older son of the people who lived behind us.  He was quite a bit older than the rest of us, didn't have the same condition, but his mental state was like a very young boy.  Pleasant and eager to help.  At the same time, another older of two boys on the other side of the block was also "slow" but not so bad that he couldn't hang with those of us who were a few years younger, though his brother treated him poorly.  Later, a cousin of mine had a child with Down Syndrome.  Nice boy who is now an adult and said to be working and earning.  So, though, like most anyone, I'd prefer that the three of you didn't have this to deal with, Tera's condition makes absolutely no difference to me.

What are you most of her for?
Her ability to sign. And her picking 2 of the best people in the world to have as parents. She really picked well. I'm just sayin'. Also how good she was while sitting in The Stanley Cup getting paparotzied with all the cameras going. She was a trooper.

Probably her walking, but really everything she does she does with so much energy and determination , she amazes me and I am so proud of her.

What were your initial thoughts/fears/worries, etc when she was born and you found out she had DS?
My initial fear was that she was born a Red Wings fan. That would have required major surgery to correct. Down Syndrome? Eh, that's nothing compared to being a Red Wings fan. On a serious note, I just wanted her to be healthy. No worries, just concerns. How can I be worried when she's got the best parents in the world? I knew she would love hockey - everything else is just a distraction.

The possible health issues and the extra pressures it would put on you both as parents.

I was concerned about the severity.  At the risking of offending, as this is an awkward thing, children with Down Syndrome have a distinct look.  It is almost as if they are all of the same family.  But to me, Tera does not "look" as if she is a severe case, if you get what I'm trying to say.  Of course, I was also concerned for you and continue to be so.  Being so much like your mother, I think you definitely get what I'm trying to say here.

So there's a bit of a preview of what I have to share.  I'll share some more of what they had to say, hopefully get a few more responses back, and also share some more overall thoughts and reflections.  Tomorrow I'm very proud to share one of my younger sister's beautifully written reflection.  We are truly lucky to have such phenomenal families and such an amazing support system.




Sunday, October 21, 2012

Day 21

I'm tired.  I'm tired of being tired and I'm tired of having no time.  This month is all about awareness and support of DS, but people need to know it's not all rainbows and smiles all the time.

Tera is now up to four therapies a week and while we try to schedule at least half of them at daycare, it took me almost two weeks last month just to contact her therapists and schedule the sessions.  That doesn't include the actual session taking place and the inevitable cancelling and sometimes rescheduling when she's sick or all the juggling that goes on between Tom and I to make sure one of us is home with her for the ones we do attend.  Please don't read this and think I'm looking for pity because I'm not. Everyone has problems, but this is my way to deal with the stress and so here I am dealing.

Our weeknights are ridiculous some weeks and while I'll admit some of it is brought on by us, I'd like to think  we do deserve to do some things we actually want to do and sometimes those things happen on weeknights. They weren't exactly footloose and fancy free before my damn herniated disk and resulting shoulder pain, but since then I've also had to add in two hour and fifteen minute appointments a week on top of our pre-existing engagements.  The only plus side to those is that they do include a one hour type of massage and that's kind of the only time during the whole week that I'm forced to relax.

Then there are the weekends.  I don't feel like we're over booking so much as all the things we'd like to do and people we'd like to see happen to fall on the same two days.  I've written about my fall bucket list and things I'd like to experience with Tera at this age that I don't want to regret missing out on later, but apparently that also means making ourselves crazy in the process.

This year, like last year, Tom is playing in two hockey leagues.  One he's played in for years which is every other Friday night at 9:40 from September until the end of May.  This used to be more of an inconvenience when we didn't have a child and I wanted to do things on Friday nights, but mostly now I just catch up on housework or grading or TV and go to bed.  He also plays some Sundays up in Kenosha with some guys I work with.  This is an actual competitive league (Friday is mostly rat ice style) and it's only on some Sundays.  The times vary from 3:30 to 8:00 and I mostly don't mind this one it's just that Sunday nights used to be our time to relax.  But he really loves it and that is his way to relax and he deserves to have that time to himself.  It's also one more thing to plan around on the weekends.

Meanwhile I spend more time postponing my to-do list than actually accomplishing everything on it.  The winter is usually a little better because there's no yard work and less outdoor activities, but for now we still have to figure out how to cut the grass every few weeks, when to bring our outside stuff in, when to rake, when to trim the bushes before winter, and various other tasks.

And then at some point on most weekends it all overwhelms me, I have a (usually minor) meltdown, regroup, and I'm somewhat ok.  Then the whole process starts all over again.  It's a tough balance of not being recluses but having all of our housework and projects done, and having a life but a house that looks like a tornado went through it with dirty dishes and dirty clothes.  I don't know that I'll ever figure it out, but I'd like to think I'll get better at handling it (believe it or not I'm better now than I used to be).

And to top it all off, we have a child that does still tend to be more sick than the typical child.  Yesterday we spent a good portion of the day at the zoo, some time with friends last night, actually went to bed at a decent time, but Tera was up multiple times culminating in puking all over me, herself, and our bed at around 7am.  This added in several loads of laundry to the already extensive amount I had to do and then we had a sometimes cranky, kind of lethargic, un-Tera like Tera with a still very delicate stomach to contend with.

Tera had her face painted like a scarecrow at
school on Friday...
Ok I'm done.  I've got it all out, I'm going to look at the pictures we took yesterday of my favorite subject, enjoy my wine, and wait for my husband to come home so we can maybe watch Walking Dead before we fall asleep.


Saturday, October 20, 2012

Day 20

Today we visited Brookfield Zoo for the first time with Tera as a walker; and walk she did.  I'll post some pictures tomorrow because I'm way too tired now.

Unfortunately, this whole week she's been a little off and today there's definitely something wrong.  It might be minor, hard to tell right now, but she's not eating as much (not the end of the world), exhausted (not too surprising considering her napping was off today and she had a lot of stimulation and walking), but also a tad feverish.  We're really hoping it's just teething, which we never really know for sure with her because they come in so incredibly slow that they usually end up coinciding with some sort of sickness.  Hopefully tonight she'll sleep well and until 7:15 again tomorrow which we were lucky enough to experience this morning.

So my salute to DS tonight is while I'm thrilled that she's finally walking, and earlier than the "average" age for  kids with DS, I fear she's fallen victim to yet another virus she can't fight off as well as other kids.  We'll see what tonight brings and maybe tomorrow night I'll have something a little more creative and/or inspiring.

From around this same time last year when she also wasn't feeling well...

Friday, October 19, 2012

Day 19

Tonight's post is short and sweet.  At our conference a few weeks ago the guest speaker, Dr. Brian Skotko said that music was a part of that extra chromosome Tera was was born with.  We have come to find out that is very true.  This child loves to dance and we're doing our best to expose her to only the best music.  Here are two of our favorites so far...




Thursday, October 18, 2012

Day 18

Tonight I was enjoying my usual snuggle time with Tera while putting her to bed.  She fell asleep quickly as she seems to have had a little bit of an "off" afternoon and evening.  As I held her sleeping in my lap my usual thoughts ran through my head.  I could be doing laundry, or catching up on emails, or any number of things.  But NONE of those things is ever as important as that time with my little girl.  I find myself saying that I'll put her in her crib in just a minute, but then holding on for just a bit longer.

About a month ago someone on Facebook shared a link to a blog in which a mom wrote about all the last times.  As parents you are always wondering when the next "first" will be, but you rarely know when a "last" will be and it's so true.  You celebrate the "firsts", but many times you won't even know something is a last until it's long gone.  The last time you give them a bottle before bedtime, the last bath you give them before they can do it themselves, the last time they hold your hand in the parking lot, the last book you read to them instead of them reading to you.  Even as an adult there is the last night you spend at home.

I don't want to look back on any of my special times with Tera and realize that I rushed the "last one" and so I will continue to relish every second of that time with her.  But as she fell deeper and deeper into sleep her head kind of rolled to the side of my shoulder exposing her right cheek to me.  Yesterday Tera had a bit of a spill on the playground which resulted in several scrapes and marks on her sweet little face as she came into very close contact with the wood chips.  So as her cheek lay there exposed and damaged, I couldn't help but softly kiss her little marks in hopes of making them disappear.  I of course know that there is no scientific evidence that mom's kisses have healing powers, but I know that even as an adult, they can sure make you feel better. So I just repeatedly kissed her face and the next thing I knew my hand was over her heart.  And as I realized this, I felt the swishing that comes as a result of her murmur and the hole and it makes me smile and sad all at the same time.

You see, when I was first pregnant I was so desperate to hear her heartbeat.  My doctor doesn't do 8 week ultrasounds and I couldn't feel anything but nausea yet, so I wanted some proof of her life.  The first appointment my doctor thought I might be able hear it, he couldn't find it.  He assured me it was still early and everything seemed fine, but in my mind I was panicking.  As I scheduled the next appointment, I made it about a week earlier than it needed to be because I just wanted to hear it.  And around 11 weeks I did.  It sounded like galloping horses and it was beautiful.  As I walked back to my car that afternoon, I told my unborn child that it had better not scare me like that again (little did I know just how much she wasn't going to listen to that demand!)  At every appointment after that, I got to hear her heart and at 20 weeks, when the ultrasound technician announced she was a girl, we got to see her little heart pumping.  Fast forward to February 26, 2011 when my sweet girl entered the world only to find out that she had not one, not two, but three holes in her heart and they were concerned because one was fairly large and about 12 hours after she was born, the doctor informed us it could mean surgery.  But that was not going to deter Tera.  After a few days in the NICU, a few EKG's and two heart echo's later, the biggest hole had closed and she was out of danger.

Now, she has only one hole still open and it's very easy to hear and feel.  But the louder it gets, the healthier she is (small hole =  more noise as the blood goes through it).  But no matter how small, and how little it affects her, I still wish I could kiss that and make it all better too.

A flashback, but one of my favorites...

Wednesday, October 17, 2012

Day 17

I've struggled a bit this week in my energy level and my ideas for posts.  This would be the hard part of the 31 for 21 challenge.  The rest of the year I write when I need to and when I want to so a topic isn't difficult to come up with, but it is called a challenge for a reason and the point of this month isn't just to blog, it's to blog to help spread awareness.

A few weeks ago when Tom and I attended our conference, one of the sessions we went to was on financial and legal planning for Tera.  It was the second of this type of presentation we've been to and we walked out of there feeling better and more informed than the first time we went.

Last spring Gigi's offered a similar type of presentation and we were both eager to go because we knew it was something we had to do and we knew very little about it.  Being exposed to all that information was very overwhelming the first time, but incredibly helpful and exactly what we were looking for.  When this opportunity came up at the conference this time, we both agreed it would be a good idea to go again.  We had two reasons for this; one we wanted to hear the same thing from a different person to make sure what we were told the first time was sound advice, and two, we wanted to know if there was anything else that we missed the first time.

We are both glad we went both times.  We now know what we have to do, we're just bothered by the fact that we have to do it.  It's difficult for anyone to plan on what will happen to their assets and their families when they are gone, but it's even more difficult when you have to plan for not only their childhood, but their adulthood as well.  Because we don't know what Tera will be able to do when she's older, we have to plan for as many different scenarios as we can.  But what also bothers us, is that we have to spend what will probably be a few thousand dollars just to make sure she isn't taken advantage of and that she's taken care of.

What this means for us: Tera will need a Special Needs Trust set up in her name so that any money she is given for any reason will be protected in case of our deaths and so that she will still be eligible for Medicare and government assistance if she needs it.  This is because the government has stipulated that if an individual has more than $2000 in their own name, they are not eligible for government services and/or assistance.

We will also have to designate guardians to care for her, and trustees to care for her finances.  We will have to make sure that we set up a will that designates that her money go into her trust, that our life insurance goes into her trust, that our 401k and 403b go into her trust, and that any monetary gifts she gets throughout her life go into her trust.  There are lots of other details to this, but it's a lot of stuff that I don't remember and still am not 100% clear on.

Tom and I have already discussed the possibility of Tera living with us for the rest of her life and we have a plan.  But there's every chance that she will live on her own, with a roommate, or with her husband.  I suppose it's one of the joys and "challenges" of living with the unknowns of DS.

Tuesday, October 16, 2012

Day 16

This is another fact post.  Many of you have followed along the past year and a half with all of Tera's various sicknesses and procedures and visits to pediatric specialists.  As stressful as some of those times have been, it doesn't even come close to comparing with what some other kids (DS or not) and their parents have to go through.  I always try to be cognizant of that when I'm worried about her, but in those moments of concern for your child, it doesn't seem to matter that it could be worse, it matters that they're not well at that moment.  But regardless, she has been sick a lot, minor as some of it has been, and there are reasons for that beyond just that she's one and in daycare.  People are always intrigued when I tell them how many different health issues kids with DS face just as a result of their extra chromosome.  To some people it's not a surprise and to some it is, but a lot of the time in either situation, they don't understand why that is the true.

So tonight I'm including a list of health concerns associated with DS.  If you'd like to check out any of these further go to http://www.ndss.org/Resources/Health-Care/Associated-Conditions/ to see the list I'm posting along with the links to further information.


  1. ADHD & Down Syndrome

    Attention deficit hyperactivity disorder, or ADHD, is a commonly diagnosed childhood problem. However, ADHD-like symptoms are more common in young children with Down syndrome compared to children from the general population.
    Researchers and scientists have located several genes on chromosome 21 that are involved in the aging process which contribute to the increased risk of Alzheimer’s disease.
    Complications of anesthesia (sedation during surgery) occur in all patient populations, but are more likely to occur in individuals with Down syndrome than their peers without.
    Individuals with Down syndrome are at an increased risk of atlantoaxial instability, a serious disorder that could result in spinal cord damage.
    Individuals with Down syndrome frequently show abnormalities in the blood cells for various reasons.
    Dental care is important for everybody, but people with Down syndrome can have a number of differences that can require special attention.
    Autism spectrum disorder occurs more frequently in individuals with Down syndrome than in the general population.
    Ear, nose, and throat problems are common in children with Down syndrome. It is important for primary care physicians and caregivers to be aware of these problems, most of which are present throughout an individual’s life.
    Individuals with Down syndrome have a higher incidence of endocrine problems than the general population. The endocrine system refers to a set of glands that include the thyroid, adrenal and pituitary glands.
    Beginning in the newborn period, people with Down syndrome have an increased likelihood of developing medical conditions that interrupt or interfere with this digestion.
    Abnormalities of the cardiovascular system are common in Down syndrome, as approximately half of all infants born with Down syndrome have a heart defect.
    At least half of all children and adults with Down syndrome face a major mental health concern during their life span.
    Studies show that half to all people with Down syndrome have obstructive sleep apnea. This can contribute a number of potentially serious health concerns.
    Down syndrome has effects on the developing eye, which could impact the proper development of vision.

Monday, October 15, 2012

Day 15

So while I am pretty proud of my posts so far this month, I feel like I should take an opportunity to share some of the actual facts regarding DS.  Last year I tried to share a fact a day and I'll post those soon too because you can't be too knowledgeable and let's face it, this is AWARENESS month.  But today I'm going to post a list of myths and truths about DS because I think a lot of these are common misconceptions and because it's Monday night and I'm exhausted.  Kind of a cheat but a worthwhile cheat I think.

Here it is (from NDSS.org)

MYTH: Down syndrome is a rare disorder.
TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, or approximately 6,000 births per year. Today, there are more than 400,000 people with Down syndrome living in the United States. 
MYTH: People with Down syndrome have a short life span. 
TRUTH: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.
MYTH: Down syndrome is hereditary and runs in families.  
TRUTH: Down syndrome is hereditary in approximately 1% of all instances.  In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35).  Translocation is the only type of Down syndrome known to have hereditary link.  Translocation accounts for 3 to 4% of all cases of Down syndrome.  Of those, one third (or 1% of all cases of Down syndrome) are hereditary.  
MYTH: Most children with Down syndrome are born to older parents.
TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.
MYTH: People with Down syndrome have severe cognitive delays.
TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.
MYTH: Most people with Down syndrome are institutionalized.
TRUTH: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.
MYTH: Parents will not find community support in bringing up their child with Down syndrome.
TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. 
MYTH: Children with Down syndrome must be placed in segregated special education programs.
TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
MYTH: Adults with Down syndrome are unemployable.
TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.
MYTH: People with Down syndrome are always happy.
TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.
MYTH: Down syndrome can never be cured.
TRUTH: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
This would be Tera frantically trying to shove cookies in her mouth after the bag exploded all over the floor...


Sunday, October 14, 2012

Day 14

So I basically failed at yesterday's post completely.  There was no good excuse, it just didn't happen.  Oh well.  Today's is going to be short and sweet.  I pretty much fell even more completely in love with Tera this weekend.  We got to spend some really good quality family time together and I'm just head over heels in love with that kid.  I'm completely amazed and in awe of most everything she does and I just love when I have the time to just watch her.  Most everything she does she does with such purpose and concentration and she takes such pride in everything.

I also love watching her with other kids.  Friday night she was able to spend time with one of her BFF's and it's one of the sweetest things ever to see them just constantly give each other hugs and kisses.  Saturday she got to spend some time with our good friends and their kids who are a little older than she is, but she just loved being able to play with them and trying to keep up with the bigger kids.  Then today she got to see her other BFF and her face just lit up when she saw her and my child who has been eating everything under the sun lately pretty much just abandoned lunch so she could get down and play.

And then one of the best parts of my whole life lately has been how much more affectionate and snuggly she is.  She loves giving kisses and hugs, she loves to wave goodbye and blow kisses, and since she's started walking and has so much more coordination and control of her body, she loves climbing on us (Tom mostly) and just sitting or reading.  She just adores her Dad and actually lights up when she sees him.  Today she woke up from her nap and happened to be sleeping on my shoulder in our bed while Tom and I were also napping.  I was mostly awake and all of a sudden her head popped up, she looked over and saw Tom, and she got the biggest smile on her face, climbed over to him, and just laid her head on his back.  One of the common stereotypes (not a bad one in my book) is how affectionate individuals with DS typically are and I have to say, of all the things that come along with that extra chromosome, a lifetime of endless hugs and kisses from my daughter is one thing I am definitely looking forward to.

Tonight Tom is playing hockey and so I put Tera to bed myself and well after she fell asleep I continued rocking her.  She was sound asleep, just laying in my arms snuggling with her stuffed animal and I just felt so comforted by her little body.  I only hope she was as comforted by me as I was by her and if my experience is any indication, she was.  I still feel comforted by my mom, although it's been many many many years since I fit in her lap, even the sound of her voice makes me feel better.  I pretty much always still call her when I'm sick and even though I'm all grown up and have my own home and my own child, it's still tempting to ask her to come take care of me and I know that she would if I did.

Unfortunately it's Sunday night and while I don't experience anywhere near the anxiety that I did last year at this time every weekend, it's still hard knowing I have to wait another week to have this time with my family again.

Friday, October 12, 2012

Day 12

As a mom (or dad) good mental health is always a struggle to maintain.  I myself basically suck at taking care of my mental health and that was even before Tera was born.  I'm just not somebody who is good at relaxing because in my head there's always something that "needs" to be done.  I realize this is not true, that most things do not "need" to be done and everyone should know that Tom has spent the majority of our 15 years together trying to convince me of this this, albeit unsuccessfully. It's part of my personality and while I'm not proud of it, I have learned to manage it (to a point).  One of Tom's, and my, biggest concerns before Tera was born was whether I'd be able to prioritize things appropriately so that when she was born, I wouldn't make myself even crazier than I already was.  This was of course all before we knew how "special" Tera was going to be.  But you know what? I did get better.  I don't try and clean everything every weekend, I do some things every weekend like laundry, vacuum the floors, lunch preparation, litter boxes, grocery shopping, etc.  And some things I do every other weekend or every couple weeks like cleaning the living room, our bedroom, washing the floors, yard work and so on.

Our time is more limited now than it ever has been and it's also more important than ever that we spend it wisely.  We spend so much time juggling therapies and doctor appointments and making sure we work on strategies, remembering to give all her medications, and all those other basic child responsibilities like meal times and bath time, that it's difficult to find time to just be a normal family.  In most ways I'm glad Tera was our first child because we don't have a different "normal" to compare this life to.  We have Before Tera and we have now and while every family takes time to get adjusted, it's even more complicated when you throw in all the complications of DS.  Of course we also get to throw in some of the perks which include Family Fun Nights at Gigi's like we had tonight.

One of the things I've read repeatedly is to make sure I take time for myself and that we as parents take time for ourselves as a couple.  I have to say I think we're better at taking care of our relationship and each other than I at am at taking care of myself.  Tom does a damn good job of taking care of me when I need him to, and even sometimes when I don't, but it in order for it to be most effective, it has to come from me.  I haven't actually discovered any great way of doing that, but I have a lot of good ideas.  I love to read, I love to cross stitch, I enjoy baking, I used to like baths but they honestly take too much time and effort lately.  I used to enjoy working out and eventually I'll be able to do it again (I had a pretty good stretch going for a few weeks, but then life kicked in and then I pinched that damn nerve) but now I see my chiropractor and get a therapeutic massage every one to two weeks.

And tonight, while Tom plays hockey (which is for his mental health), I'm sitting on the couch with my tea and a blanket watching tv.  In a little while I'll go up to bed and snuggle up and go to sleep and try and get some decent rest.   I have lots of things on my list that I could be doing and on Sunday night I might regret not getting more stuff done tonight, but for tonight it feels damn good.

Thursday, October 11, 2012

Day 11

Earlier this week Tera's EI coordinator emailed me to ask me if I would be willing to be a parent match for one of her new cases.  It's a family that has a new baby that was diagnosed with DS and they're just starting the EI process and she wondered if I might be willing to talk with the mom and share my story with her.  I immediately said yes; how could I not?

The majority of parents of kids with DS fall into two categories: those who have a prenatal diagnosis and those who have a birth diagnosis.  I don't know that either one is better than the other, believe me I've thought about it extensively.  I have said before that in our situation I really do believe the birth diagnosis was best for us. I'm not a person to just wait and see what happens and I would have been researching and reading non-stop and imagining all the possible worst case scenarios.  This way was I was able to go through my pregnancy with no more worries than the average person might experience and more importantly, I was able to stay calm for the sake of my unborn child.  Stress is not my friend and has caused more problems in me than I can list.  I can't imagine what kind of distress I could have caused Tera if I had known while pregnant.

Of course finding out within an hour of what is supposed to be one of the happiest moments of your life that your entire life and what you imagined that life to be has been turned upside down, isn't something I would wish on anybody either.

But what I've learned through all my reading and researching is that each situation is unique.  Everybody feels and experiences something a little different.  There are lots of moms that are thrown into a type of post-partum depression and spend the first year or more not being able to accept the situation.  There are some moms that have a hard time bonding with their child because he/she is not who they thought they would be.  There are some that make huge life changes to help deal with and accommodate their new life.  And there are some moms who decide they just aren't the best person to raise their child and they give him/her up.  And then there are those who cry, mourn, get angry, and sad, but then realize this what life handed them and they move on.  Is any one of these scenarios any better or worse than the others? Not at all.  It is a very traumatic thing to have happen and there is no manual on to correctly deal with it.  You make your decisions and you try and live with them.  I'm sure at the beginning there were some people that thought we hadn't really accepted Tera's diagnosis as easily as we seemed to, but I can tell you that while we did accept it, it was NOT easy.  Not at the beginning anyway. I have cried a lot in the past year and a half; some angry tears, some frustrated tears, some sad tears, and some happy tears.

I've read many times that when new parents mourn their child with DS, it's not because they're necessarily mourning the fact that they have it, they're mourning the child they thought they would be having and there is a difference.  If you know someone or meet someone whose baby has DS, don't pity them, congratulate them on their new miracle.  Don't be sad for them for they will experience so many moments of pure bliss along with the way.  I'm including a short story that I loved when I first heard it, was somewhat irritated with a few months in, but now realize that it is just one perspective and can appreciate it for how beautiful the sentiment is.


Longtime Sesame Street writer Emily Perl Kingsley has been advocating for people with disabilities since 1974, when her son, Jason (co-author of Count Us In: Growing Up With Down Syndrome), was born with Down syndrome. In 1987, she wrote Welcome To Holland, which has remained a source of comfort and inspiration ever since.  

Welcome to Holland

BY EMILY PERL KINGSLEY

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy.
You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The
Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place full
of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new
language. And you will meet a whole new group of people you never would have
met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after
you've been there for a while and you catch your breath, you look around...and you
begin to notice Holland has windmills...and Holland has tulips. Holland even has
Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging
about what a wonderful time they had there. And for the rest of your life, you will say,
"Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that
dream is a very, very significant loss.
But...if you spend your life mourning the fact that you didn't get to go to Italy, you
may never be free to enjoy the very special, the very lovely things...about Holland.
***
©1987 BY EMILY PERL KINGSLEY.
ALL RIGHTS RESERVED.