Moments.

Moments. We all have them. No, I am not talking about the “calgon take me away” moments but the good ones. The ones that take your breath away and leave your body filled with the satisfaction and contentment of joy and happiness. True moments. Yesterday, I experienced several of these.

Emma and I came inside and she decided to sit down on the stairs. I decided to stop what I was headed to do and sit down with her. Had I not made that decision, I would not have experienced the most amazing, longest conversation we have ever had to date. I don’t even know if I can recall everything we talked about because I was so engulfed in the moment… at all she had to say. It was such a beautiful moment, one that still brings happy tears to my eyes. It is not that Emma is not verbal usually, but to the average person it is probably hard to decipher what she is saying because she leaves out so many connecting words when she talks and she typically has a hard time putting what’s in her brain into words. Not this time…she was talking beautiful, flowing sentences! What did we talk about you ask? Well, nothing really. That seemed like a lot of buildup for nothing huh?!? :) She told me in detail about her day at school, who she sat with at lunch, that her resource teacher had glasses on, that she saw her friend Kaylyn and she was wearing flip flops like Emma, that she had a chicken sandwich, broccoli and chocolate milk for lunch and then about her upcoming plans to have her friend Amanda sleepover this weekend and how they are going to watch a movie, have popcorn, play basketball and go to Drew’s baseball game. I know these are normal everyday things to a lot of families, but for me this was a shining moment for Emma in my world with her. I couldn’t help but have some slight feelings of sadness creep in for two reasons. One being that I did take some of those same type conversations with Drew for granted when he was that age. So often it is easy to ignore our kids because we are always so busy. Let this be a lesson. Your children are only young once, so don’t let moments pass you by. Even when they are teenagers and then adults, never let the opportunity pass you by to have meaningful conversations. The other, is sadness for those who do not know Emma on this level and therefore miss out on these opportunities to be amazed by her. For me, this was absolute perfection and my heart was filled with joy.




(I accidentally hit my hand on the door and someone found it amusing!)

A little while later Drew came waltzing in the kitchen and smiled, showing that he had lost another tooth. He has been a very late tooth loser, just like his mom and dad. Now he has about 5 teeth loose at once (which will make for some awesome redneck pictures when they all come out!). He brought me his tooth and put it on the counter and I swear my eyes flashed back and I saw him standing there as a 6 or 7 year old. Except he is not. He is now 13 ½ and instead of bursting with excitement for the tooth fairy to come, he tossed his tooth on the counter and said “what’s for dinner, I’m starvvvvvving”? And then the flashback was over and there was my always hungry teenager! Where has the time gone? Why is it so hard to watch them grow? It almost seems cruel sometimes. Maybe that’s silly but I wish I could bottle time. As if I wasn’t already internally emotional enough, he proceeds to tell me how some advice I had given him a few days before on a situation he was dealing with, helped a lot. He listened. I repeat, he listened to my advice. Oh man, was my heart bursting! In a phase of his life where we are always wrong and he is always right, my sweet baby had let what I said to him soak in. Another moment.



Lastly, we have a mama bird in our backyard that has made a nest for her babies. There are two little eggs in the nest. Apparently the bird scared Drew the other day when she flew out from under the deck and he decided it was an “angry” bird and he didn’t like it. I wanted this to be a teachable moment for Drew, so I explained to him that she built that nest all on her own and she was protecting her babies. As I was telling him this, I couldn’t help but be in awe of God’s beauty and how even a little bird knows what it means to be a mother. Really? Simply amazing. This morning, Drew had to run outside to check on the bird before school. Teachable moment achieved I’d say.



Oh and this is how I found the kids this morning. Emma found her way into her brother's room...again!



Have you had any “moments” this week? If not, I pray you do. Happy Friday!

Lots of reasons to be happy today!

* Sydney's surgery was a success and she is at home recovering nicely (my cousin's baby who had surgery for syndactyly yesterday).

* Kim's surgery was a success and she is recovering, but still in hospital (friend from work who had a double mastectomy yesterday).

* My kids track out Monday! Always makes things a bit easier in some ways.

* I don't have to work tomorrow!!!

* I am having dinner with Jill tonight.

* My friend Allyson is coming home today from her 2 week trip to Honduras.

* I am going to buy Miranda Lambert tickets.

* I read a sweet article today about Down syndrome. Left me smiling.

* It's Easter weekend and I am looking forward to celebrating with our families.

* And as I am typing this, I just got a call that a spot opened up for Emma for camp this summer! Yay!!

Life is good. It is important to always remember all that we are constantly thankful for, but also to appreciate and grow from the trials we go through. Those things are what make us stronger and define who we are as a person.

Happy Easter everyone!

This is what happens when...

These photos were the product of us rushing out the door to go somewhere. I had my camera with me and I told the kids to get together real quick and let me take their picture. Usually this is quite the ordeal with Emma, but she did great! Hope you enjoy.















Happy Spring!

"I confirm and understand that I have the choice in seeking care in an intermediate care facility for individuals with mental retardation (aka an institution) instead of participating in the Community Alternatives Program for individuals with mental retardation/developmental disabilities."

Perspective.

This section of a form was staring me in the face, needing me to put a check mark and signature in the box, first thing this am. It was part of Emma’s annual review for CAP services. Though this was not actually my intended blog post for today, reality and perspective took over and won. A flood of emotions consumed my mind and heart. I stopped everything I was doing, took a moment and said over and over to myself “really?”

Reality.

The reality of this one simple box that needed to be checked stung me like a swarm of bees. My heart sank when I read it. It literally took my breath away. I just couldn’t imagine. Oh yeah, I DO have a child with Down syndrome. It is VERY trying at times. It has stirred up many unwanted feelings for those who don’t understand. This is the reality we live in. A reality where there are so many unwanted children in this world. So many misunderstandings and misconceptions about those with disabilities. Not for this mom though. I relish in it. I soak it up. I can’t get enough (sometimes). I want more. I want to learn more. I want to help others and I want to give Emma the life she deserves. I want to wrap myself in the blanket of Down syndrome and share its warmth.

Thankful.

Thankful is the word that comes to mind when I see this form. Interestingly enough, thankfulness for the circumstances in my life was exactly what I wanted to blog about today. I am so thankful for the programs and early interventions and the people that have been put into place to give us hope for our children with disabilities. I could not imagine living one.single.day. without my precious daughter in my life, in our house, sleeping in her own bed. Thank you Lord for allowing me the opportunity to let my little one know she is loved and wanted.

Joy.

I suddenly realized how alone and empty I would feel without her in my life. On the days I let the hardships of having a child with special needs get to me; I still end the day praising God for the blessing He has given me. I really do. I’m not sure I have ever experienced true joy until becoming Emma’s mother. Don’t judge and think I am disregarding being Drew’s mother, but everything is very different when you are the parent of a child with special needs, plus we all know with age comes wisdom. I wouldn’t say I had too much of that at 19 years old when I became a mom for the first time. I experienced many other wonderful emotions with Drew. Joy though. A joy like no other. This fruit of the spirit was given to me by her… so effortlessly. And I am so undeserving.

Gratefulness.

I am forever grateful for the opportunity to be Emma’s caretaker. I couldn’t imagine her being in a place filled with unknowns, all alone waiting for someone to love her. I embrace taking care of her as my job and one that I do with great pride. I am grateful to actively participate and be a part of every milestone she achieves. So very grateful. I am also grateful for the choice to check this box that yes, I do understand I have that right but I respectfully decline.

Let's just say- Emma will be getting an extra hug and kiss when I meet her radiant, smiling face at carpool today.

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.

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…

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.