Tuesday, February 22, 2011

The "R" Word


If you know me then you know how I feel about this word. I am very passionate about ending it. I am offended and hurt when people use it, even if it is used out of context. I have heard this word repeated over and over, by co-workers, strangers in the store, acquaintances and sadly enough, even by people somewhat close to me.

It.is.hurtful.

Obviously having a daughter with Down syndrome has made me very sensitive and aware of this word, but it started long before the blessing of Emma. Please join me in this national campaign to end this word. It needs to stop NOW.


When you use this word, you are speaking about my daughter and the many, many others who don't have a voice for themselves.



Let's make a difference to break the cycle. Please join me now. Will you take the pledge? Visit http://www.r-word.org/ to make the pledge (this is a verbal pledge not monetary). I would love to see my family and friends made this pledge in Emma's honor. Feel free to "share" this post on facebook or email using the links below.

Tuesday, February 15, 2011

Surprise!



My Valentine’s Day was a day full of amazing surprises for me. These were not your typical Valentine’s Day surprises, but even better in my opinion.

Yesterday was my kids first day back after being tracked out for three weeks. My first surprise was when Drew told me he didn’t mind going back and was kind of looking forward to it. I immediately took his temperature. Drew does not like school (what 13 year old does)! That was shocking, but wonderful to hear. Later in the day, my second surprise came when Emma’s teacher emailed me saying that Emma had a great first day back and participated in all the Valentine's festivities and loved every minute of it. She had so much fun they didn’t even pull her out for her resource time. Always good to hear the positive comments from her teacher!

On Wednesday of this week, I have Emma’s annual IEP meeting. This is the dreaded day each year. Doom and gloom day. I hate it and there just isn’t a nice way to say that. I sit with a room full of people who think they know what is best for my daughter. I get to review all the things she “can’t” do instead of making them see all the things she “can” do. You would think after all these years I’d be used to it, but it never gets any easier. Having said that, I decided to email her special education teacher to ask for a heads up on what recommendation may be coming our way as far as classroom placement for next year. I knew the attempt at mainstreaming may be short lived and certainly came with a price-the price of fighting the fight of my life to get Emma the education I feel she deserves. My third surprise- I received an email response from her special education teacher saying her only recommendation for next year is to increase her resource time an additional 30 minutes. Say what? Wow. I was shocked. We’ll see if that turns out to be true (one missing piece of the puzzle is mandatory psychological testing she has to have this month to determine her area of eligibility –please pray about that!) but this was a wonderful, very unexpected surprise.

Remember this post? Waterman Family Blog: Bravery I have been waiting to hear about Emma’s lab results. Last night I heard from her endocrinologist. My fourth surprise- most of her labs were within normal limits, including the test for Celiac disease (which was positive just 7 months ago) and her thyroid levels. But wait, it gets even better! She was diagnosed 4 years ago with hypothyroidism. Since our move, we had not been giving her the thyroid meds (bad parents, I know but there were a lot of excuses, I mean reasons) so we all expected her thyroid labs to be terrible since she hasn't been on her meds in about 6 weeks, yet they were normal. She hasn't had normal labs in over 2 years ON the medication. The doctor has no explanation. She was baffled, as am I. She told us to stop the meds altogether for now and she will recheck her labs again in six weeks. Could God be providing us with yet another miracle (He closed a large hole in her heart diagnosed at birth when she was almost 3 years old, just months before she was going to have to have open heart surgery to repair it)? We will have to wait and see, but I ‘m trusting in Him. She does have low calcium, vitamin D and phosphorus, so we will address those things. Overall, a huge praise and wonderful surprise!!!

My fifth surprise was when Drew walked up to me and asked if Jon and I were going out for a Valentine’s dinner. I told him no and he said “Mom, you guys need to go out. It’s Valentine’s. I’ll keep Emma for you so you can go out.” My heart melted. At his ripe age of 13, he realizes how much Jon and I need a break every now and then and how rare we actually get one having a child with special needs. He didn’t want this Hallmark holiday to pass without us having time together. That was all the Valentine’s I needed right there. We did have to take a rain check on his offer since it was a school night. Raising teenagers is not all that fun (as I’m learning) but when beautiful things like this happen, you are reminded how it is all worth it. I love you Drew. You made my Valentine’s.

My sixth surprise was when Jon walked in the door last night with a Valentine’s Day gift for both Emma and me! He went the practical route (since he wasn’t supposed to get my anything to begin with) and bought some decorative shelves to help me take the plunge to start decorating our new house. He bought Emma a cute, pink life jacket for our new pool. Emma doesn’t like getting in, so he thought this will help her with her confidence and safety of course. It was obvious he put some thought into our gifts. What a good man he is. I love that guy so much!

I went to bed, once again, feeling so blessed for all the good things in my life. I am so undeserving. I hope your Valentine’s Day was filled with love, laughter and a few surprises too…

Monday, February 14, 2011

Happy Valentine's Day!

1 Corinthians 13:4-7

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

Thursday, February 10, 2011

Bravery

Emma had her routine endocrinology appointment yesterday. She is such an amazing patient whether it's the dentist, pediatrician, cardiologist, endocrinologist, ophthalmologist, gastrointerologist, ear, nose and throat doctor etc. Yes, you see, she visits lots of doctors each year. In fact, yesterday while we were waiting for the endocrinologist to come in the exam room, Emma looked at me with a huge grin on her face and said "Mommy, I can't wait for the doctor. I'm so excited." She sure does make life easy when it comes to all the doctor visits, but I certainly give God the glory because only He knows how much I can handle. :) Of course, Emma does morph into a different person when we get home and have to chase her around and hold her down to get medicine in her but that's a different story for another time! I wanted to share some pictures I took yesterday when she had her blood drawn.


Me: "Um are all those vials for her???"
Lab Tech: "Yes ma'm. Dr. Friedman is checking a lot of labs."


Emma: (in her facial expression, not words) "Lady, what are you about to do to me?!?"
Lab Tech: "Sweetie, I am not here to hurt you. You will feel a little prick and that's all. I promise it will be fast and then I have some silly bands for you."
*Side note- The lab tech's eyes look a little scary in this pic!


Me: "Emma, look at mommy not your arm."


Emma: (expressions) "This isn't so bad!"


Emma: (expressions) "I think I'll even show off a bit!"


There they are, 7 vials plus the last one in her arm still.


Emma: "All done. Silly bands now please."

What a trooper this girl is! Now for the prayer request. These labs will tell us her vitamin levels (vitamin D was slightly low last time), thyroid levels (she already has hypothyroidism and is on synthroid but her numbers haven't been regulated in 2 years yet), check for potiential celiac disease (her numbers were high for this 6 months ago, but we decided to repeat them in 6 months before undergoing an intestinal biopsy- AKA be in denial :), routine check for Leukemia (for unknown reasons, children with Down syndrome have a 50% chance of getting Luekiemia, sed rate (to check for arthriitis because Emma complains a lot with her legs hurting) and a metabolic panel. Obviously these are all large issues so we are praying for great results!

Monday, February 7, 2011

The People You Meet

Ecclesiastes 4:9-10 NIV
Two are better than one, because they have a good return for their work; If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!


Do you ever think about the people (outside of family) you are closest to and how you met them? When I think of those friendships I treasure so dearly, I am in such disbelief at how empty I would feel had we never met. Oddly enough, who knows if these are people I would've have normally been friends with if certain circumstances of our lives didn’t bring us together. Today I am feeling so humbled and so thankful for all the special people the Lord has brought into my life. To each of you, if I have not told you enough, your friendships are a true gift and blessing and I treasure each and every one of them unconditionally. It has taken me a long time, some hurt, grieving and healing from past friendships to realize what real friendships are supposed to be about. I Pray I am as good of a friend to you as you are to me. So to my friends, I dedicate this post to you!

Proverbs 27:9
The heartfelt counsel of a friend is as sweet as perfume and incense.


To my 3 close friends from where our friendships originated (TGP) - I am so thankful, even more so now that our gatherings are so far and few between, for the time we get together. I love how we can switch from uncontrollable laughter to deep talks so quickly. We have blessed almost every restaurant in Raleigh with our loud, obnoxious selves (some of us more than others!). We have created so many wonderful memories that I hold deep in my heart. I miss the summers we spent at the pool watching our kids grow up together and though all 4 of us are on different courses for our lives now, I am so thankful our friendships remain in tact. Thank you all for taking me in as a pregnant 19 year old CHILD, opening your arms to me and showing me what real, Christian sisterhood is all about. I love you all deeply.

To my 3 longest standing friends whom I met at Mt. Vernon back when I was 9 years old- I can not put into words how much I value our friendships. With all 3 of you, it seems if times passes and we haven’t talked, we can pick up right where we left off. I enjoyed our reminiscing of childhood memories on facebook last week. It brought back many funny memories and I’m so grateful to have made them with each of you. One of you I had dinner with recently, one of you I saw last Saturday and one of you I haven’t seen in way too long but talk to all the time :), but I still feel just as close to each of you as when we were kids. That is the true definition of friendship. We have a bond that will never be broken. To say that I still talk with friends who I’ve had since I was 9 is an honor. I love each of you and treasure our dear time together!

To the person who was Emma’s very first occupational therapist and became my dear friend- You helped me sift through so much emotion, pain, agony, questions, concerns, milestone’s and laughter in Emma’s earlier years. You were such a crutch for me, being patient with all my “when will she do this and this and this” questions, getting me developmental charts (and highlighting them!) and even attending our IEP meeting when I needed you. I looked forward to each time you were coming to work with her. One of my fondest memories was the time Jon came home for lunch unexpectedly and found you and I eating Cheetos and Oreos, watching your wedding video in my living room (after you had worked with Emma of course)! Good times. You are a wonderful OT and a beautiful girl inside and out. I am so thankful our friendship evolved out of having Emma and I have treasured watching you become a wife and a mommy. I miss our times together, so this serves as a reminder to us both that we need to have dinner soon :)

To the moms I have met through TDSN and our playgroup- Where to even begin? We have all been on quite the ride with our children with Down syndrome. I am so thankful for our “circle” for two reasons. First, I love that my daughter has a place where she feels fully included with peers just like her, though she may not realize it. She loves playing with her playgroup friends and it warms my heart and satisfies my soul to think of their many future memories together. We all know how important friendships are and I am thankful my daughter calls each of your daughters her friend. Second, I am thankful for the adult friendships us moms have made. We all share a bond like no other. There is no need for apologies when we are together, no judgment, no need for explanation if a tear is shed and a common joy and excitement shared when a milestone is reached. We just understand. We get it. We love and support each other in ways we may not get from other sources in our lives and that’s okay because that is why we are friends! I am thankful that each of you shares my desire in watching our girls grow and flourish together. I am thankful for the support system we are to one another. I treasure our times together both with and without our girls. I am a better person for knowing each of you and blessed to call you all my friends. (Sorry- the organizer in me is coming out…reminder: moms night out Feb 21st-).

To the 3 RCCC gals who have added me into their dinner night’s out (most recently at Olive Garden)- I am enjoying getting to know each of you more and more each time we are together. I love how you all have a servant’s heart in one way or another. You 3 are all giving women and are excellent examples and reminders of what it means to show God’s love. I love how you understand if any of us show up to dinner late, frazzled or covered in spit up or breast milk (not me of course :) ahem…Krista. I have laughed quite a bit with you girls. I am honored to be a part of the “club.” I look forward to making many more memories together and sharing many more yummy birthday desserts! Looks like you’re stuck with me…

To the best DT we ever had for Emma and also my dear friend- I hope you know how blessed we have always felt to have you as a part of Emma’s life, and ours. I’ll never forget the day I got your number from Becca and called you on a Friday afternoon asking if you would be interested in working with Emma. My heart skipped a beat when you called back saying you would love to! I always saw something special and different in you. You have such an amazing gift for working with children with special needs. You have provided many fun, exciting hours for Emma, all while teaching her. You made me feel good about leaving Emma with you and that says a lot. She loves you like no other. I appreciate how you have always gone the extra mile to keep in touch and to see her, even when you weren’t working with us anymore because of grad school. We are always honored that you come to the buddy walk with us too. It makes me so proud and warms my heart. I am so happy to watch you graduate from State and move on to get your masters degree. You are going to be an amazing OT and we will tell every client you ever have if you want us to! :) I am tremendously honored that Emma gets the precious gift of being your flower girl in your wedding in August. I have thought about your phone call asking me many times and each time I tear up. You know how I hold those who love my daughter so close to my heart and you are no exception. We love you to pieces!!!

To my longest standing friend from high school- Girl, what is on your butt? :) I know we don’t talk as often as I’d like, but it’s more now than in years past so we are doing better right?!? I don’t know if I have ever fully thanked you for sticking by my side during times when others did not. You were my only friend from high school at my wedding and your support meant the world to me. Please know that I have never forgotten or overlooked it. Even way back then, you knew what it meant to be a true friend, no matter what the circumstance. I treasure our friendship and our conversations when we get the chance to have them. We had many, many fun memories together and you certainly stuck with me at times when I didn’t give our friendship the time and attention it deserved because I was preoccupied with being crazy in love! Haha, rainbow phone! I have some of my fondest high school memories with you and I hope in the future we can make more memories together. We really have no excuse now that I live closer to you! I am honored to call you my friend. I love you!

To all of my couponing buddies- Or the “crazies” as we are sometimes called…I enjoy sharing all the good deals with you. I am so thankful that something like couponing has made us all close friends. We all help each other and that’s what it’s all about. I hope you all continue to find many good deals all while saving money for your families and giving to others. Remember what a true blessing it is. I am thankful for each of you.

To my dancing buddy and Sytney’s mom- Okay so you are family, I know, but also a very dear friend. When you came into our lives, I was sooooo excited to have another female around with all my boy cousins!!! I have enjoyed all of our family get-togethers so much and couldn’t imagine them without you there. We have shared many laughs and a few tears and it is always a blast to be with you. I love how we can text each other some random question and think nothing of it. I appreciate all the times you have asked me about Emma and truly care about her and the things she goes through. I am honored to have danced to “All The Single Ladies” with you in Melanie’s upstairs loft, among other songs I won’t mention on my blog. :) You are the best white girl dancer I have ever seen. I am thankful for our beach trip last year and the time we spent together. I loved it when we sat on the beach and people gazed aka- talked about everyone walking by, and created our new name, Cheese Nips, for which we were almost kicked out of the movie theater later for laughing so hard about! I also loved the rebel in me encouraging you to get Dr. Pepper while pregnant. Sssshhhh, our secret. You are the most amazing mom and I know that our friendship has been taken to the next level because we now share that common bond of being mommies. Sydney is blessed beyond measure to have you and Blake for parents. I am so happy we get to watch her grow. I treasure our times together and I am thankful for your dear friendship. I look forward to more dance parties soon.

To my new Bible study group friends- I am so excited to jump into the word with each of you. I love having that spark ignited inside me to learn from this Bible study. I treasure our time together as we learn more about each other and our study. I enjoy winding down from our day together and sharing some laughs and discussions before we get started each time. I have already made some awesome friends and I know this is exactly where the Lord wanted me to be at this time in my life. What a blessing it is to know that I have friends praying for me each week. I already know I will be sad when our study is over but I know this is just the beginning of our friendships!

To my “Chubby Tacos” dinner gals- you 3 are really going to seep over into the next category too, but I am so thankful for our time together when we meet for dinner. It’s a wild ride having 13 year old boys and you 3 make me feel like life is normal on days I feel it is not. So much of my time is focused on things for Emma and I am so glad to have friends that have boys the same age as Drew so I can talk about him as well (good and bad!). I love baseball, I love you all and I am so thankful the two intertwine. I love laughing with you girls! I am also excited that we will all be seeing a lot of each other very soon at the games :) I vote we order t-shirts that say “Meet me at Chubby Tacos after the game.” Go Durant! I have to give a special shout out to one of you for the magnificent scrapbook you made me based on my blog post. You know how much I love it, but thank you again. I will be sure to bring it to our next dinner. Your friendships mean a lot to me and I look forward to the next time we can get together again.

To all my friends I have met through baseball- We all share a common love for the sport. I have spent a lot of time on the baseball field since I was 12 years old first watching Jon and now Drew and have loved every minute of it. Yes, we are a special kind of crazy spending most weekends at tournaments while others are doing typical summer activities like swimming, grilling out, going to the beach etc. But, we know how to make it fun and boy do we ever! We have spent many hours together and made lots of memories for our boys that will last a lifetime! I treasure each of your friendships and look forward to many more to come both on and off the field.

To my wonderful friend who really loves my daughter- Yes we met through baseball but it goes much deeper than that. I remember meeting you when the Mudcats and Bulls were both playing at Myrtle Beach. You had a sweetness and sincerity about you that I didn’t see in most people. I immediately knew I wanted to be your friend. Throughout the years, you have opened up your home for us to have many fabulous parties there. I have enjoyed our time together and will never forget the awesome party you threw me with our baseball friends for my 30th birthday at the beach. That is a memory that has always meant so much to me. You have such a giving spirit about you and you are such a hard worker. You are a great mom and wife. What makes you stand out above all others is your desire to have a relationship with Emma. You love her. You want to know her. She still carries her bear from Build-A-Bear around. Its memories like this that a parent of a child with special needs never takes for granted. I thank you from the bottom of my heart for loving her and for what a wonderful friend you are. I love you!

To my great friend and the funny way we met- While you were playing softball with my husband, I was keeping yours company in the stands. I know, it sounds so odd but it was meant to be. I am so thankful we met. I treasure our friendship more than you probably realize. Yes, I know you fell into another category already, but you deserve one of your own (plus I thought you’d like that)! You have been such a spiritual guidance for me in so many ways. You have encouraged me to branch out and do things that I wasn’t always comfortable with. I greatly appreciate your persistence in holding me accountable for participating in Sunday School and Bible studies. I love spending time with you whether its late night couponing trips to Harris Teeter, going out to eat or just reading each others faces at get togethers. Haha! You are so funny and I love laughing with you. I love your family and I thank you for encouraging me when I needed it the most. I am honored to call you my friend. Oh, and I vote you let that hair grow to live out your dream!

To my newest couponing/Bible study friend- We don’t even know each other all that well yet, but it seems we have a lot in common. I know our friendship will grow and blossom because we are passionate about the same interests and helping others. I look forward to many lengthy talks and sharing our great finds together. We haven’t even tapped into what other areas of our lives may be similar so I am excited to learn more about you. I am already so thankful for the Lord bringing you into my life. See you tonight! :)

To my friend who happens to be married to my brother- I know I am again breaking my own rule of not including family members but how could I not? On this subject you are not my sister-in-law, but you are my friend. I am so thankful you are in our lives. We have had soooo many fun times together and lots of laughs (remember when my dad thought that’s what LOL meant?). I love it when you are around because you always brighten the day. I have enjoyed our many lengthy talks about life. I love how you bring a carefree spirit to the table. You know who you are and that is a beautiful thing. My favorite memories of us are the boat/AB trips and poker parties. Those have been some of the best times of my life and I am so glad we shared them together. Thank you for loving my kids and being a part of their lives too. I treasure of friendship and I know it will never end. I love you!

To the other mommy who knows what it’s like to have “special needs mommy moments”- When we met 4+ years ago, I had no idea what good friends we would become. Our kids were blessed enough to be in the same class for many years and I must admit, it’s not the same this year. Though we don’t get to talk as often as I’d like anymore, we always know we share many common bonds, but that one special one in particular. We know we can call each other at the drop of a hat when we are having our “down moments” from parenting a child with special needs or need to vent about the misunderstanding of those around us. We have laughed, we have been angry at others, we have cried and we have vented and stuck together to make it a better place for Emma and Cameron. I miss the days we would drop the kids off and hit 5 Harris Teeters for triples. I’m sad that we didn’t treasure that time enough and now it seems almost impossible to find time to even talk now. I want you to know I love you and always will. The bond we share can never be torn down and I am honored to call you my friend. I am always here for you.

To my friends who blog- I want you all to know how much you brighten my day by writing your blog posts. I feel as if I know each one of you so personally, even though some of us have never even met. Writing can provide an intimate view into your soul and I enjoy sharing my journey with each of you and thank you for doing the same for me and others. Keep on writing!

To our newest friend- “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11. This is the verse that comes to mind when I think about what the last two weeks have become for our family. I received an email from a girl inquiring about working with Emma. As it turns out, she more than knows what it is like to work with a person with Down syndrome because she has a 14 year old brother with Down syndrome. But it’s more than that; she has the heart, the desire. This is a parents dream and I am so honored we have the privilege of welcoming you into our home and hearts. I can’t wait to get to know you better but I love you already. You understand and you want to do it anyway. You want to use your light to be a light for others. I am so excited I can hardly stand it. God had his hand all over this from the very start. I have never been so sure about anything before. So, welcome my new friend!

To my very best friend- I don’t know why I saved you for last, but I did. It’s so challenging to condense my thoughts about our friendship into only a few sentences. Though we really got to know each other through a tragedy in your life, there has never been a doubt it was meant to be. It is glorifying how God can use something so sad to bring out something so good. Our friendship is the most beautiful, unique thing I have ever been a part of. I feel like I have been missing out my whole life not finding you until we were in our 20’s (or were you in your 30’s? Haha). I am in awe daily at what an inspiring, amazing person you are inside and out. You inadvertently force me to strive to be a better person. You are the exact definition of what a friend is. You stick with me through the good, bad and ugly and accept me for just exactly who I am. You love my kids just like they are yours. You are a helper, a fighter, a giver and a sweet spirit. You don’t put expectations or limitations on me and you help me to grow in the areas I choose to grow in. You create an aura of laughter and happiness when you are around. I treasure every single minute we spend together. I can’t even begin to name all the memories we have made but there are tons and we have many, many more to make. I have been tremendously blessed by knowing you and I thank God constantly for bringing you into my life. A part of my heart and soul were empty until I found you. I am seriously complete now. I love you more than you could ever know.

I know this was extremely lengthy but it needed to be done. I am so happy to share my thankfulness for all of my friendships with each of you. I pray you will realize the blessings of the close friendships you have in your lives and treasure them the way you should. We are all somebody’s friend. Remember that.




*Stay tuned for future posts about my family members. No, I am not leaving them out!*