Kids and costumes are pretty much a perfect combination! My older girls are just old enough now to really enjoy the idea of dressing up and trick-or-treating. They have been planning with their little buddies for a few weeks now to share the experience (almost didn't happen due to a dead car battery, but we succeeded). They had a blast. First we visited with an old friend.
Then we walked down to the church and played games until our friends joined us. Then the gaggle of kids trooped off to collect candy. So cute watching them all together. But my favorite part was this...
This is the reason I am not scared of Reagan's future. She is so loved and will always have people around her to love and support her. Olin did not want Reagan to miss out on trick-or-treating so he took her from me at each house and carried her to the door and brought back her piece of candy for me to hold. With friends like that Reagan is going to grow up just fine :)
Now I am going to officially pat myself on the back for not missing one single day of posting this month. I actually managed to find something to say everyday and the time to say it. I really enjoyed the challenge and I think it will be easier to blog regularly (not everyday though) from now on. I've "met" some great new people too and look forward to keeping up with their blogs.
I know the plans I have for you...Plans for welfare and not for calamity to give you a future and a hope. I will give thanks to Thee for I am fearfully and wonderfully made.
Monday, October 31, 2011
Sunday, October 30, 2011
What did you say?
I realized that I mentioned Reagan's hearing test and visit to the ENT a while back and didn't report back with the results. Reagan acts like she can hear well. She looks at us when we say her name, she signs on our request, she responds to sounds. However she does still have some hearing loss. The ENT says she has fluid in both ears which is causing some if not all of her hearing loss. (think trying to hear under water) We are of course praying that it is the cause of all of it because it can be fixed. Will be fixed as a matter of fact as her ENT (another fabulous doctor, I will be forever grateful to our wonderful midwife Lori for sending us to the best pediatrician ever who has set us up with some good specialists!) has determined that she should have tubes put in her ears. It is a small procedure that will only take about 20 minutes, but she does have to be put under general anesthesia so Mama is nervous about it. Her surgery will be done outpatient on Wednesday and we should see an immediate difference. She has been "talking" more lately with her signs ("ah doh" when signing all done etc) so it will be interesting to see if hearing better encourages this. Check back Wednesday to find out. :)
Saturday, October 29, 2011
People Second
Do you know what People First language is? I'd be willing to be a full 50% of people reading my blog don't know...and I consider that a good thing. When you have a baby with Down syndrome you learn a lot very fast. What it is. What goes along with it. Heart, thyroid, nose, ears. Therapy. And the proper way to talk about Down syndrome and people who bear the extra chromosome. (Now I know I'm gonna shock some here) I don't get it. Why in the world do we need a set of rules about the proper way to talk about Down syndrome? The theory is that it shows respect, but the way I see it requiring people to speak with "People First Language" puts the people second. By making a set of rules that must be followed you are now putting more focus on words and language than you are on the human being you're supposed to be talking to or about.
By having a set of rules that must be followed in order for no offense to be taken you are going to make people so worried about saying the wrong thing that they will say nothing at all which really doesn't help with inclusion. People first language basically has to do with grammar, and I really don't see how grammar can be insulting or demeaning. It says that you should always put the person first and the diagnosis second. Person with Down syndrome instead of Down syndrome person. I really don't understand why its a big deal. There are also rules about Down syndrome versus Downs syndrome. And people get really uptight about it all. I just have to fall back to what I said before...speak respectfully and in love and you can't go wrong.
The term Downs baby does not bother me. That is what Reagan is. And I don't want anybody to worry about us getting offended because they don't "know the rules".
By having a set of rules that must be followed in order for no offense to be taken you are going to make people so worried about saying the wrong thing that they will say nothing at all which really doesn't help with inclusion. People first language basically has to do with grammar, and I really don't see how grammar can be insulting or demeaning. It says that you should always put the person first and the diagnosis second. Person with Down syndrome instead of Down syndrome person. I really don't understand why its a big deal. There are also rules about Down syndrome versus Downs syndrome. And people get really uptight about it all. I just have to fall back to what I said before...speak respectfully and in love and you can't go wrong.
The term Downs baby does not bother me. That is what Reagan is. And I don't want anybody to worry about us getting offended because they don't "know the rules".
Friday, October 28, 2011
Scenes from Vacation
We've been on vacation for the last three days (okay since Monday, but only gone the last three days), and now we are home! I have managed to keep up with posting while we were off on our family adventures, but I have missed reading all my favorite blogs, so I'm excited to be able to catch up :) I've tried to have something worthwhile to say even if it is small and everybody has been so sweet with their comments! As I look through pictures to share of our adventure packed three days I thought I didn't really have anything to say...and then I realized there is something to point out here (other than adorable little girls that is). Note that in the last three days we have:
Toured a mission
Flown kites on the beach
Explored our way down to the Oceanside Pier
Roasted marshmallows and enjoyed s'mores
Hiked around a lagoon
Kayaked
Built sand castles
Explored tied pools
Spent the day at Legoland
All in three days. The point? Down syndrome didn't hold us back at all! Sometimes when you get the diagnosis of Down syndrome you might feel like everything is going to change and you won't be able to do the things you used to or are hoping to do. Look at that list....pretty normal! We did all the things I've been hoping to do with the girls since they were born. And I can't wait till Reagan is bigger so she can participate even more! Life with Down syndrome is pretty normal and pretty great!
Toured a mission
Flown kites on the beach
Explored our way down to the Oceanside Pier
Hiked around a lagoon
Built sand castles
Explored tied pools
All in three days. The point? Down syndrome didn't hold us back at all! Sometimes when you get the diagnosis of Down syndrome you might feel like everything is going to change and you won't be able to do the things you used to or are hoping to do. Look at that list....pretty normal! We did all the things I've been hoping to do with the girls since they were born. And I can't wait till Reagan is bigger so she can participate even more! Life with Down syndrome is pretty normal and pretty great!
Thursday, October 27, 2011
Made This Way
Theme Thursday 4 is upon my and it is the most difficult for me....what is one thing that you wish people would "get". I've been thinking it over all day and having a hard time coming up with something. The truth is that we have been so blessed to be surrounded by family and friends that are so loving and supportive that we haven't had any (that I can think of) negative reaction to her Down syndrome. Everybody who knows her talks about how cute she is, or how well she is doing in therapy, or how smart she is with her signing, or what a beautiful smile she has. Positivity all the way. So there is nothing that I wish people would "get" about Reagan...what about Down syndrome. Oh yes...come to think of it, I do wish there was something that people (in general) would "get" about Down syndrome. Want to know what it is? I wish that people would understand what Down syndrome actually IS! You would be surprised how many people (and the medical community is NO exception) don't know what it is or how it manifests. Now pretty much everybody close to us either knows or has asked because they want to know about Reagan, but people in general don't know. I have actually had more than one person ask me if she still has it. Down syndrome is not a disease. There is not a cure because it is not an illness. It is genetic. The same as being a boy or girl is programmed genetically from conception. And no God will not take it away if you pray. If you were to take Down syndrome away from my daughter she would no longer be Reagan. She would be a completely different person. Her extra chromosome is in every cell in her entire body...every toe, every dimple, every hair on her head carries an extra chromosome and you can't take that away. Nor would you want to. She is fearfully and wonderfully made in God's image just like the rest of us.
P.S. I am always open to questions...no stupid questions and I will never get offended! Ask away :)
Wednesday, October 26, 2011
We were visiting a mission today and saw this in the cemetery. It struck me that there are far too many innocents represented by this memorial. "Our time" has become not a safe place to be conceived if you are not genetically perfect. Too many siblings are looking at this
instead of looking at this.
We should never deprive siblings of the joy a little one like this can bring. Read this story for a heart-touching example. More cuteness tomorrow since the camera has been recovered.
Tuesday, October 25, 2011
Another Happy Birthday
I've said it before and I'm sure I'll say it many, many times in the years to come....one of the best parts of joining the Down syndrome club is some of the wonderful people we've become friends with. Today (and Saturday...party time) we get to celebrate the birth and life of one of Reagan's amazing little friends. Happy 2nd Birthday Laura, we are so glad to be a part of your life! I love watching Reagan play with Laura...they are so cute together (okay so they are just cute and when you put two cutes together it is almost unbearably cute) and really play with each other.
Check out Ashley's idea here for her baby sisters (Laura is waiting for her sister to come home to her forever family) and leave her a little birthday love :) Camera retrieval tomorrow so I promise some new cuteness.
Check out Ashley's idea here for her baby sisters (Laura is waiting for her sister to come home to her forever family) and leave her a little birthday love :) Camera retrieval tomorrow so I promise some new cuteness.
Monday, October 24, 2011
Happy Birthday Mamay
We went to visit Rafael's Grandfather today. It is his 87th birthday. He very much enjoyed seeing the girls and telling them how beautiful they are. He gets a gold star for telling me that the best thing I can do for them is stay home with them now while they are young. :) This was Mamay's first time meeting Reagan and he fell in love. Who wouldn't? Reagan was making faces and giggling when he laughed at her. As I watched them interact...the baby with an extra chromosome and the old man who relies on family to care for him...I was struck by how special they both are. How important their lives are. And how both of them could be considered a drain on society. How could anyone think that?!? Mamay didn't know Reagan has Down syndrome (he is too confused and wouldn't remember if we tried to explain it), all he saw was a precious baby worthy of love. Reagan didn't know that Mamay has memory problems and can't live on his own anymore, all she saw was someone to share love with. They have the right idea!
Sorry about the poor picture quality, I left my camera at Grammy's house and won't get it back till Wednesday, so we had to settle for a phone picture.
Sorry about the poor picture quality, I left my camera at Grammy's house and won't get it back till Wednesday, so we had to settle for a phone picture.
Sunday, October 23, 2011
People Correctness
I don't *do* political correctness. Because its, well, political. And political isn't really about people. Its not. Politics are all about ideas, arguments, convincing someone your way is right. So it stands to reason that political correctness isn't really interested in individual people, but in someone's idea of what is correct. People are not all the same...as a matter of fact there are no two people alike. So there is no one correct way of addressing people. People correctness...that's what I do. Speak to each person as an individual and out of love. It really doesn't matter so much what you say as how you say it, if your heart is in the right place you don't need the right words. Use whatever words you want to talk about my daughter as long as you to speak to her and of her with love and respect.
Photo by Laura Bug Photography |
Saturday, October 22, 2011
Stubborn
I don't know where she gets it from, must be her extra chromosome because none of the rest of her family is in the least bit stubborn, especially not her mama. <grin> Just one more way Reagan is more alike than different. She is showing her stubborn streak off this week too. Fighting therapy...no I won't stop arching my back or put weight on my arms. Fighting signing...mama you know perfectly well what I want when I point to it so why in the world should I make the proper sign. Fighting sleep....don't you know 1 year olds don't need to go to bed if they don't want to, what do you mean you're going to leave me here by myself. Of course I won't really complain about that stubbornness as it will help her power through hard stuff in life just like it has for her mama...ok I admit I'm verrrry stubborn tenacious.
Friday, October 21, 2011
21 Things about Reagan (31 for 21 Post 21)
1. Reagan has the exact same color hair and eyes as her sisters
2. Reagan is named after her Grammy (my mom) who ironically works with special needs kids
3. Reagan is very, very social and loves meeting new people. She even waved to the random man walking past us in the park.
4. Reagan's first word was duck (okay "duh") and that is also her favorite toy, and the theme of her birthday party.
5. She waves AND says bye bye :) and blows kisses
6. She had Open Heart Surgery at 6 months old and stayed in the hospital only overnight. She is a fighter!
7.The cat, who is not social with anyone else, will sleep with Reagan in her crib if we don't chase him out. He loves her.
8. Reagan LOVES music and rocks on her little baby grand piano or her drum.
9. She has three teeth and will eat anything she can get to her mouth..we have to watch her!
10. Reagan inspired me to build a business I could use to help Reese's Rainbow orphans come home...and she doesn't mind sampling the goods either.
11. Reagan loves to take my hands and play pat-a-cake and peek a boo and clap them...but not her own. I tell her to clap and she grabs my hands.
12. Aside from her heart issue, Reagan has been my best nurser and eater of all three of my girls.
13. Reagan pays attention to EVERYTHING!
14. Despite the fact that she cannot crawl, she tortures her sisters by chasing them around the house inchworm style while they try and set up a game where she can't destroy it.
15. Reagan was born still in her amniotic sac
16. Mickey Mouse tried to kidnap her when we went to Disneyland...her Godfather put a stop to that though :)
17. Reagan loves to feel the wind in her face.
18. Reagan loves to swing...see above :)
19. Reagan has had more doctors appointments in her 1 year than I have in my 31...and she's perfectly healthy now.
20. Reagan looks good in every color...its really not fair!
21. And this last one is from her 4 year old sister when asked to tell me something about Reagan...."she's leeetle....and she has drwon syndom"
3. Reagan is very, very social and loves meeting new people. She even waved to the random man walking past us in the park.
4. Reagan's first word was duck (okay "duh") and that is also her favorite toy, and the theme of her birthday party.
5. She waves AND says bye bye :) and blows kisses
6. She had Open Heart Surgery at 6 months old and stayed in the hospital only overnight. She is a fighter!
10. Reagan inspired me to build a business I could use to help Reese's Rainbow orphans come home...and she doesn't mind sampling the goods either.
11. Reagan loves to take my hands and play pat-a-cake and peek a boo and clap them...but not her own. I tell her to clap and she grabs my hands.
12. Aside from her heart issue, Reagan has been my best nurser and eater of all three of my girls.
13. Reagan pays attention to EVERYTHING!
14. Despite the fact that she cannot crawl, she tortures her sisters by chasing them around the house inchworm style while they try and set up a game where she can't destroy it.
16. Mickey Mouse tried to kidnap her when we went to Disneyland...her Godfather put a stop to that though :)
18. Reagan loves to swing...see above :)
19. Reagan has had more doctors appointments in her 1 year than I have in my 31...and she's perfectly healthy now.
Thursday, October 20, 2011
Faith and Down syndrome (31 for 21 Post 20)
"Faith is the substance of thing hoped for, the evidence of things unseen" Hebrew 11:1
God is unseen. Faith is a choice. The choice to jump from the cliff of reliance on yourself and trust that God will catch you. And he will. And the funny thing is he is still unseen, but from that spot in the shelter of his arms, you can clearly see the evidence all around you. Count your blessing...evidence.
Look at a beautiful sunset...evidence.
Watch your children sleep...evidence.
Faith is a gift. When you lean into that shelter it does not take away fear, or worry, or even pain necessarily Those things are part of a flawed human existence. But one thing that is a constant when you let go and trust in God is Peace. Because...God is Good, all the time.
"in all things God works together for Good..." Romans 8:28
God doesn't make mistakes. We do, but he doesn't. Not when he made you. Not when he made me. And not when he made a little girl named Reagan who has an extra chromosome.
Psalm 139: 13-16
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
I never grieved over Reagan having Down syndrome. I was scared. I didn't know what it all meant or what we were facing. But I did not grieve. Because I knew that she was created by God and God does not make mistakes. He has a plan and that gives me peace. I don't have to know it all or do it all or understand it all. I just have to believe.
"For I know the plans I have for you, declares the Lord, plans for peace and not evil, to give you a future and a hope" Jeremiah 29:11
God's plan is better than anything I could come up with for myself even if it doesn't look like it on the surface. Just like our children do not understand why we ask certain things of them so that they learn and grow in the best way, we don't always understand where God is taking us, but we can trust that his plan is good. I could give example after example (and have in previous posts) of the amazing path of God's plan in retrospect. Nobody wants to walk down the path that looks painful, but when you get to the other side and look back and see what you've learned and BAM it hits you what you would have missed if you didn't have faith. So when I get scared and overwhelmed, I turn back and give it up and know that no matter how hard (broken car, no money, Down syndrome, heart surgery) life gets, there is a Father I can put my faith in.
It is very hard to put all of this into words and I'm probably doing a poor job of it because faith is personal, but I can describe it this way: Have you ever had a horrible, terrible, no good very bad day? (whether it is really bad or just one of those days) At that moment you have no hope and no joy. And someone comes to you and says "just lean on me, its going to be okay". They fold you into their arms and you breath and feel warmth and peace take the place of stress and whatever has been wrong. You know that feeling? That is what faith feels like when you climb into God's lap. That is what has brought me through some truly horrific things in life.
Wednesday, October 19, 2011
Randomness
I've spent too much time reading amazing blogs today and not much time thinking of anything wonderful to share on my own. Oh well, sometimes we just have random days. Today was one of those. Just little bits and pieces and suddenly the day is gone. Lost in laundry (mostly done), kid activities and a over-tired fuzzy brain. Random thoughts and activities from today:
Early morning snuggles in bed with Reagan and Daddy is a great way to start the day...normally the big girls wake us up first.
Reading and obsessing and reading and obsessing some more about the new blood test and the value of human life...it eats at me and I wish there was something I could do.
Reagan had her hearing test today. There is still fluid in her ears and she still has mild to moderate hearing loss, she hears best in the low register. They still don't know if it is all from fluid or some sensory. Looks like we may be getting tubes :( Not happy, but I want my baby to be able to hear!
New tires. WooHoo the car is safe to drive again!
Bike riding with the big girls...Clarisse is getting good at it! We'll have to do some family biking on our vacation time...did I mention we are having our first (stay at home) real vacation since Clarisse was a baby!
I'm sure more went into this day, but did I mention my brain is fuzzy? Tomorrow is another shared subject day: faith and Down syndrome...I'll try and be more coherent. :)
Early morning snuggles in bed with Reagan and Daddy is a great way to start the day...normally the big girls wake us up first.
Reading and obsessing and reading and obsessing some more about the new blood test and the value of human life...it eats at me and I wish there was something I could do.
Reagan had her hearing test today. There is still fluid in her ears and she still has mild to moderate hearing loss, she hears best in the low register. They still don't know if it is all from fluid or some sensory. Looks like we may be getting tubes :( Not happy, but I want my baby to be able to hear!
New tires. WooHoo the car is safe to drive again!
Bike riding with the big girls...Clarisse is getting good at it! We'll have to do some family biking on our vacation time...did I mention we are having our first (stay at home) real vacation since Clarisse was a baby!
I'm sure more went into this day, but did I mention my brain is fuzzy? Tomorrow is another shared subject day: faith and Down syndrome...I'll try and be more coherent. :)
Tuesday, October 18, 2011
Scenes from Therapy (31 for 21 Post 18)
As promised I attempted to get some video of Reagan signing. I only managed to get her to sign "more" while I had the camera rolling, and I missed her successfully pushing up to sit for the first time ever! So I will keep trying to capture her greatness, but here are a few scenes from today's therapy.
"More" and she gets insistent when she really wants something :)
She looks like she could crawl, but refuses to move her hands.
She actually pushed up to sitting from here and I didn't have the camera on video!
This last one wasn't from today, but I've been meaning to post it cause its just so cute.
Tomorrow we go for a hearing test to see how well Miss Reagan can ignore hear us. We know she can hear, but the question is how much better she might be able to hear.
Monday, October 17, 2011
More Harm than Good
In case you didn't know this about me...I am pro-life. Adamantly! As in abortion is wrong; no exceptions. We are not God, we do not have the right to choose who is worthy of life. I bring this up tonight because a new test just come on the market today that can (in theory) accurately and non-invasively diagnose Down syndrome as early as 10 weeks gestation. *disclaimer, I do not and never will judge someone who tests with the full intention of keeping the baby, rather for information...for a wonderful example go here* I see nothing good about this test. I am not going to rationalize or sugar coat anything here. This test is designed to allow women to find out their unborn child has Down syndrome in time for an early termination. Early enough that the pregnancy does not even need to be revealed. Early enough that you could pretend it's not really a baby. There is nothing good here. I know that some will say that not all women want to abort. That they just want to prepare themselves. And this is true. And I am glad that not everyone will use it to end a life. But that does not make it a good thing. This test will do far more harm than good. Women who do not find out their child has Down syndrome before it is born will be ok. I am. So are many others I know. Babies who are terminated because their mothers are told it is undesirable and can be detected early and easily will not be okay. They will no longer be. I am blunt I know, but to marginalize this does no good.
Sunday, October 16, 2011
A Look Back
This whole month I've been thinking over and over...last year at this time. Last year at this time Reagan was tiny and fragile. A newborn with a heart defect. What a difference a year makes! I forgot my camera today so I thought I'd share pictures that I took on this day last year.
Reagan meeting her Godfather for the first time.
Reagan snuggling with the jingle Pooh that Uncle Reggie brought her.
And just because it doesn't feel much like fall...babies and fall leaves are sweet.
Wasn't she tiny! She's twice that size now :)
Saturday, October 15, 2011
Remembering the Lost Ones
I have a more somber post this evening. As I perused internet-land today I became aware of the fact that it is Pregnancy and Infant Loss Remembrance Day. Losing a baby whether before or after it is born is every mother's nightmare. One I pray I never experience, but one that I have faced head on in this past year. I have friends who have experienced miscarriages. I know mamas who have lost their babies before they came home from the hospital and after what was supposed to be life-saving surgery. I am remembering these little ones today.
And I am remembering the 9 out of 10 little ones who never had a chance at life. It is a heart-wrenching fact that 90% of babies with a pre-natal diagnosis of Down syndrome are terminated. Aborted. Killed because they are not considered perfect and worthy of life. Yet little Max's mama would give anything to have been able to snuggle her baby even one time before she lost him. Gabby's mommy shares how much she misses her baby every day...she never got to come home from her surgery. And there are women who have lost pregnancies and would give anything to carry one of those 9 babies and bring them into the world. Remember these babies. And their families. Tonight I'm lighting my candles for your lost little ones Jessica.
Friday, October 14, 2011
Her word for it
Baby girl can seriously communicate! Ok so I'm working on another post, but it is going to take a bit to get it right so tonight you are left with anecdotes about Reagan's communication skills tonight. I just wish I had some video to go along with it...I'll try and get some this weekend. It really is precious how she has figured out that she can get us to understand what she wants. Some adorable examples:
Last week she was sitting in my lap and she clapped (which I later realized was her mastering the sign "more") signed "milk" pulled at my shirt buttons and then laid down in my lap waiting expectantly for her hunger to be satisfied. It was pretty clear she wanted to nurse. I was amazed how she put all that together to ensure I understood her.
A few days ago she was sitting in Daddy's lap and he offered her a rice snack. She gobbled it down then started DaDaDa to get his attention while pointing at the bag and signing "more".
Yesterday she was sitting in her high chair eating pancakes. After finishing it I asked her if she wanted more or was all done (I didn't think she knew all done). She promptly signed "all done" and lifted her hands to be picked up.
Today I was teaching a piano lesson. Reagan loves when I teach piano lessons and she just sits and listens to the music. Well today she wanted in on the action. She scooted over to her little baby piano (see what you started Aunt Jodi) and patted the bench. So I put her on it to play for a minute then took her off to continue the lesson. She patted it again. And when I ignored her she babbled at me until I looked at her and tried yet again.
And then she spoke! Now I've mentioned that she says a few "words" but they are mostly to herself...just saying byebye or excitedly saying her version of duck. But today she said clear it clear as anything. She was eating a snack and I asked her if she wanted more or was all done...she started to sign all done then stopped, looked me right in the eyes and and firmly said "MORE". Now if only I could get her to do it again. But alas she is having too much fun signing "more" after every bite of dinner.
Last week she was sitting in my lap and she clapped (which I later realized was her mastering the sign "more") signed "milk" pulled at my shirt buttons and then laid down in my lap waiting expectantly for her hunger to be satisfied. It was pretty clear she wanted to nurse. I was amazed how she put all that together to ensure I understood her.
A few days ago she was sitting in Daddy's lap and he offered her a rice snack. She gobbled it down then started DaDaDa to get his attention while pointing at the bag and signing "more".
Yesterday she was sitting in her high chair eating pancakes. After finishing it I asked her if she wanted more or was all done (I didn't think she knew all done). She promptly signed "all done" and lifted her hands to be picked up.
Today I was teaching a piano lesson. Reagan loves when I teach piano lessons and she just sits and listens to the music. Well today she wanted in on the action. She scooted over to her little baby piano (see what you started Aunt Jodi) and patted the bench. So I put her on it to play for a minute then took her off to continue the lesson. She patted it again. And when I ignored her she babbled at me until I looked at her and tried yet again.
And then she spoke! Now I've mentioned that she says a few "words" but they are mostly to herself...just saying byebye or excitedly saying her version of duck. But today she said clear it clear as anything. She was eating a snack and I asked her if she wanted more or was all done...she started to sign all done then stopped, looked me right in the eyes and and firmly said "MORE". Now if only I could get her to do it again. But alas she is having too much fun signing "more" after every bite of dinner.
Thursday, October 13, 2011
And now.... A word from DAD
Tonight's post is one of those that has a predetermined topic, and tonight that topic is "I'm glad I have a child with Down Syndrome because..."
Before I get into the meat of the post, I guess I should introduce myself. This of course is Shauna's blog about Reagan but tonight she thought it would be the perfect night for a guest poster and she thought the perfect guest poster would be me, the husband, AKA Dad.
Well, any man who's ever had daughters knows that special and visceral bond that a father and daughter has. I have three! Before they were born I had heard about that bond and maybe even understood it in a very intellectual level but when she's born and you hold her in your arms and she looks at you with those big brown eyes, you fall in love and you know right then and there that your only job on Earth is to teach her, take care of her, and above all watch over her and protect her from all the worlds dangers. And I had experienced the miracle twice. So....
Looking back at it now, I'm more than a little bit ashamed to say that when Shauna told me she was pregnant again I was secretly hoping that this time maybe we would have a boy... Of course, when we found out she was a girl, there was some disappointment. Then, a little time later, we were told of a marker that could point to Down Syndrome but was still very unlikely. Shauna didn't seem to be bothered by it but from then on I had my fair share of anxiety about it. When it was confirmed the night she was born I was surprised, pleasantly, that the most pronounced emotion I experienced was Peace... (later that night was a whole other situation that I'm sure Shauna will address in a later post).
So now that I've given you this long winded history, you're wondering how this ties into tonight's topic...
I'm glad I have a child with Down Syndrome because in the short time I've known her she has taught me so much about me and has transformed me. I've learned so much about myself in the last year. Before I knew her I put out that I was bulletproof and arrogant about it but now I've learned about my weaknesses.... fears and anxiety about my future, my family's future, her future. It's something that I've really had to learn how to control. I've also learned that under that facade of arrogance and confidence, there is REAL strength there, strength that will pull me and my little family through the good and bad times. The beauty is... is that she's only ONE! And I know that there's more that she'll be teaching me and that means loads and loads of time I'm going to get to spend with her and learn with her. I'm excited about the future!
So here she is my third miracle, from that first moment she looked into my eyes, I knew she was placed in my arms so that she could teach me, take care of me, and protect me from the worlds dangers. Most of all she had no expectations and it didn't matter to her who I was. She just knew I was Dad and she loved me.....
Note from mom...I gave him the topic and set him loose...and now I have tears rolling down my face. Did you like it? Leave a comment to let him know.
Before I get into the meat of the post, I guess I should introduce myself. This of course is Shauna's blog about Reagan but tonight she thought it would be the perfect night for a guest poster and she thought the perfect guest poster would be me, the husband, AKA Dad.
Well, any man who's ever had daughters knows that special and visceral bond that a father and daughter has. I have three! Before they were born I had heard about that bond and maybe even understood it in a very intellectual level but when she's born and you hold her in your arms and she looks at you with those big brown eyes, you fall in love and you know right then and there that your only job on Earth is to teach her, take care of her, and above all watch over her and protect her from all the worlds dangers. And I had experienced the miracle twice. So....
Looking back at it now, I'm more than a little bit ashamed to say that when Shauna told me she was pregnant again I was secretly hoping that this time maybe we would have a boy... Of course, when we found out she was a girl, there was some disappointment. Then, a little time later, we were told of a marker that could point to Down Syndrome but was still very unlikely. Shauna didn't seem to be bothered by it but from then on I had my fair share of anxiety about it. When it was confirmed the night she was born I was surprised, pleasantly, that the most pronounced emotion I experienced was Peace... (later that night was a whole other situation that I'm sure Shauna will address in a later post).
So now that I've given you this long winded history, you're wondering how this ties into tonight's topic...
I'm glad I have a child with Down Syndrome because in the short time I've known her she has taught me so much about me and has transformed me. I've learned so much about myself in the last year. Before I knew her I put out that I was bulletproof and arrogant about it but now I've learned about my weaknesses.... fears and anxiety about my future, my family's future, her future. It's something that I've really had to learn how to control. I've also learned that under that facade of arrogance and confidence, there is REAL strength there, strength that will pull me and my little family through the good and bad times. The beauty is... is that she's only ONE! And I know that there's more that she'll be teaching me and that means loads and loads of time I'm going to get to spend with her and learn with her. I'm excited about the future!
So here she is my third miracle, from that first moment she looked into my eyes, I knew she was placed in my arms so that she could teach me, take care of me, and protect me from the worlds dangers. Most of all she had no expectations and it didn't matter to her who I was. She just knew I was Dad and she loved me.....
Note from mom...I gave him the topic and set him loose...and now I have tears rolling down my face. Did you like it? Leave a comment to let him know.
Wednesday, October 12, 2011
Milestones (31 for 21 post 12)
I have a confession to make. I don't care how long it takes Reagan to hit milestones. I've never compared any of my kiddos to any sort of standard when it comes to achievements. That is not to say that I'm not excited when they learn something new, I jump and cheer with the best of them. That is also not to say that I'm not interested in what others' kids are achieving. I "compare" just as a point of interest, it is interesting to see what different kids do at different ages. Perhaps being a teacher for so long hard wired me into not expecting people to travel at the same pace. That's good because I have never once had even a moment of sorrow about Reagan's slower development. (Actually I love that I get to savor the slower pace and really help her instead of wondering how she went from sleeping to walking seemingly overnight) It's actually really interesting to "compare" my children.
Three girls. All three breastfed. Reagan (who by all rights should have had trouble) was the best at it and has lasted the longest. She is also my best eater by far, despite the fact that she only has two-going on-four teeth.
Clarisse crawled at 7 months, walked at 11 months signed 4 signs between 6-12 months and had a 100 word vocabulary by 14-16 months. Cadence crawled at 6 months, but didn't walk until she was 14 months old. She picked up 3 signs around 12 months and had a 20 word vocabulary for most of her second year. She still lisps and is a lazy talker. You couldn't get much more diversity in milestone achievement than those two. And Reagan? Well she fits right in there too. Somethings she excels at and others she's slower. That's what makes her Reagan. Oh...you want to know what she's doing? Ok fine I'll brag if you insist. :) Reagan says 3 words (well I say its 2 since its not fair she says DaDa and not Mama so I say she's not really saying Daddy : p). Her first word was duck. She waves and says byebye, and of course Daddy. She picked up her fourth sign today and is giving every indication that she will be picking up new signs on an almost daily basis now! She is actually really good at signing even if she isn't using "real" signs. She points and waves and grabs our hands and moves them until we understand what she's trying to tell us. She is a much better communicator than Cadence was at this age.
She is sitting up and just today learning how to push herself up to sitting from her belly. She is inchworming everywhere. She drives her big sisters nuts chasing them all over the house while they are trying to play a big girl game.
She is going to crawl any second. (ok not literally any second, she is asleep right now) She will pull up to standing holding on to our hands and has very strong legs. And she LOVES, loves, loves to play music. Her little piano and her drum and xylophone.
I have never seen a child with such an aptitude for music this young, and I'm a music teacher! Watching her learn and grow each day never gets old, and I love cheering her on...oh yeah she loves clapping for herself now too when Mama tells her good job. :)
P.S. Reagan is excited to welcome to the world her newest cousin born this morning. Congratulations Baby Kaia on achieving your first milestone: being born! Welcome to the world sweetheart. :)
Three girls. All three breastfed. Reagan (who by all rights should have had trouble) was the best at it and has lasted the longest. She is also my best eater by far, despite the fact that she only has two-going on-four teeth.
Clarisse crawled at 7 months, walked at 11 months signed 4 signs between 6-12 months and had a 100 word vocabulary by 14-16 months. Cadence crawled at 6 months, but didn't walk until she was 14 months old. She picked up 3 signs around 12 months and had a 20 word vocabulary for most of her second year. She still lisps and is a lazy talker. You couldn't get much more diversity in milestone achievement than those two. And Reagan? Well she fits right in there too. Somethings she excels at and others she's slower. That's what makes her Reagan. Oh...you want to know what she's doing? Ok fine I'll brag if you insist. :) Reagan says 3 words (well I say its 2 since its not fair she says DaDa and not Mama so I say she's not really saying Daddy : p). Her first word was duck. She waves and says byebye, and of course Daddy. She picked up her fourth sign today and is giving every indication that she will be picking up new signs on an almost daily basis now! She is actually really good at signing even if she isn't using "real" signs. She points and waves and grabs our hands and moves them until we understand what she's trying to tell us. She is a much better communicator than Cadence was at this age.
She is sitting up and just today learning how to push herself up to sitting from her belly. She is inchworming everywhere. She drives her big sisters nuts chasing them all over the house while they are trying to play a big girl game.
She is going to crawl any second. (ok not literally any second, she is asleep right now) She will pull up to standing holding on to our hands and has very strong legs. And she LOVES, loves, loves to play music. Her little piano and her drum and xylophone.
I have never seen a child with such an aptitude for music this young, and I'm a music teacher! Watching her learn and grow each day never gets old, and I love cheering her on...oh yeah she loves clapping for herself now too when Mama tells her good job. :)
P.S. Reagan is excited to welcome to the world her newest cousin born this morning. Congratulations Baby Kaia on achieving your first milestone: being born! Welcome to the world sweetheart. :)
Tuesday, October 11, 2011
I Can See Clearly Now
I got new glasses today. Wow! I haven't had new glasses in three years and my view of the world was accordingly fuzzy. I went for a totally new style of glasses too, way different than anything I've done before. As I read through a piece of music for one of my students tonight I was amazed at how much easier and more enjoyable it was.
That got me thinking. Reagan's Down syndrome is my glasses for life. She has changed my perspective and style. Since she was born I have found life clearer and more easy. More easy? Yes. Really. See what I have learned is that the words difficult and hard are not the same thing. When we say life is hard we mean it is hard to bear. When we say it is difficult we mean that we have to work at it. When we work at things though, we reap the satisfaction of our efforts. And hope. And hope keeps life from being hard to bear. Clarity. Perspective. With the new clarity comes added joy. And joy makes life easier. There is a verse that says For now we see in a mirror dimly, but then face to face; now I know in part, but then I will know fully just as I also have been fully known. This of course refers to the clarity we will have in heaven, but having a child like Reagan in our lives is a little piece of heaven.
And so we get just a little slice of that clarity to filter our view of the world. Sweetness, innocence, hard work. The value and fragility of life. The community. The passion. These are all the lenses that have changed my view of the world. They are not rose-colored, they are God given.
That got me thinking. Reagan's Down syndrome is my glasses for life. She has changed my perspective and style. Since she was born I have found life clearer and more easy. More easy? Yes. Really. See what I have learned is that the words difficult and hard are not the same thing. When we say life is hard we mean it is hard to bear. When we say it is difficult we mean that we have to work at it. When we work at things though, we reap the satisfaction of our efforts. And hope. And hope keeps life from being hard to bear. Clarity. Perspective. With the new clarity comes added joy. And joy makes life easier. There is a verse that says For now we see in a mirror dimly, but then face to face; now I know in part, but then I will know fully just as I also have been fully known. This of course refers to the clarity we will have in heaven, but having a child like Reagan in our lives is a little piece of heaven.
And so we get just a little slice of that clarity to filter our view of the world. Sweetness, innocence, hard work. The value and fragility of life. The community. The passion. These are all the lenses that have changed my view of the world. They are not rose-colored, they are God given.
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