Monday, April 14, 2014

The American Dream

2014 has kept me on my toes so far! I feel like I have to stop and consciously remember to breathe at least every third day :) There was a time when I said having a child with special needs didn't make life harder and I'd now like to take that statement back. Let me explain....Now that we have three children with special needs, I am much more aware that this lifestyle we have chosen and been so blessed with makes living in a world where everyone is obsessed with the American Dream, SO hard! You see, I'm realizing more and more every day that our values are not the values shared by much of the world today. 

We've been struggling with lots of transitions...Zoya will be transitioning to Kindergarten in the fall and Mila transitioned out of early intervention (and is doing some outpatient therapies now) and before I could even catch my breath from that they told me that it was time to start Sofia's battery of annual assessments and preparation for transition planning since she turns 3 in 5 months. With all of these transitions come assessments....you know, the kind designed to hold my kids up against a whole bunch of other kids WITHOUT any special needs. The kind that rarely showcase how much progress my girls have made....the kind that barely give them an opportunity to demonstrate their strengths. Much of the past year at least one of the girls has been undergoing "assessments." Now, as a former teacher, I logically understand the necessity, but as a Mama I think these assessments are absolutely over-the-top and a big fat waste of time, for the most part. Listen, we all know what our individual strengths are, and we all know what areas we need to continue working on. I've been stewing over why these assessments and transition meetings have stressed me out so very much. 

When it was just Zoya, we sucked it up once a year for her annual evaluation, and we held our breath for the preschool transition assessments and meetings. We hated the assessments, but we sucked it up, got through it, and breathed a sigh of relief when they were over.  Now with three children, the "assessment" brick just keeps knocking me over. Over and over and over I'm reminded of what my children can't do. I never felt the need for my children to try and "keep up" with other children their age...that's not why it bothers me. It bothers me because I know I can't change other people....I can't change their knee-jerk reaction to initially (and sometimes only see the deficits of my children). I guess the whole reason these assessments stress me out so much is because they just remind me that the world's goals and values are so so so very different from our goals and values. I can't change the world, I figured that one out a long time ago, yet I can't deny how much it saddens me still, when other people don't see the beauty in my children in even half the light that I do. They are so much more than an assessment. 

They are not broken. They do not need to be "fixed." Of course we want them to do their best and will help them foster their God-given gifts and talents. We want them to be happy and we want to give them the tools for lives they can live as independently as possible. But you know what? If they live with us forever, neither Shawn nor I would be upset. In fact, try convincing Shawn that his girls very likely may want to move our one day and have lives of their own....he's not ready to hear that yet ;) Keeping the future in mind, yet valuing our girls for exactly who they are today is a delicate balance. The world says fix, fix, fix. I feel this at so many therapy sessions, so many team meetings where all the professionals try to figure out what is best for my children, so many social events where they don't quite fit in as perfectly as everyone else...and on and on. 
I feel this pressure of the "American Dream." Five years ago the Lord spoke very clearly to Shawn and I that the purpose of this life was not just to go through the motions. Having our three sweet girls with special needs has reminded us daily that we are different, but it's also reminded us that that is something to be proud of. There was a time when material things mattered so much more to us...when we dreamed of making lots of money, having the biggest and bestest "stuff", going on vacations around the world and living a life just to serve our own desires. This cracked-out idea of the "American Dream"....guess what? I've got the inside scoop that those people chasing that dream don't and won't ever feel satisfied or happy. You know why? Because I used to be one of them. It wasn't until I kicked that "American Dream's" ass to the curb that I was able to see, and feel and live this beautiful dream that was always mine for the taking, if I just slowed down long enough to embrace it. And embrace it, I will! 

Our American Dream now means....
 loving without holding back....

laughing without ceasing.....

 smiling for any old reason! 

This great new "American Dream" means
 Snuggling and just being!

Embracing our differences....

 Truly enjoying the little things....

And sharing life deeply connected to other souls!

Our American Dream can't be measured in dollars, or job promotions, or fancy things. Our American Dream can't actually be measured at all. It can only be felt. And once you feel this, the worldly values just fade away. 

Monday, April 7, 2014

Sofia's Surgery


It's been a while since I've visited this space. A while back Sofia had a sleep study that showed she had sleep apnea. I thought they'd schedule her for tonsils/adenoids immediately but the doctor said he wasn't extremely concerned since her tonsils weren't too big and her sleep study wasn't too bad (mild sleep apnea). She wasn't having any symptoms of sleep apnea at the time so we agreed to revisit the surgery if things changed. Over the past several months we've noticed a change in her sleep and have observed behaviors that definitely indicate sleep apnea. She was snoring, having pauses in her breathing, waking up gasping for air, sleeping sitting up or folded in half, and just never seemed fully rested. So when we went to the girls' annual Down Syndrome Clinic appointment, we mentioned our concerns. The doctor looked over the report and let us know that Sofia's sleep study was actually WORSE than Mila's!!! We know how much Mila's sleep and overall disposition improved after she had her tonsils/adenoids out, so we were shocked to hear Sofia's sleep study was even worse. When we spoke with the ENT we were under the impression that it really wasn't too bad! With her sudden increase in symptoms, the doctor at the DS clinic thought it'd be a good idea to go ahead with the surgery, so we had it scheduled.

Sofia had her tonsils and adenoids out on Friday, along with having her ears cleaned (TONS of wax!) and tubes checked. She and I made the drive to the children's hospital and stayed overnight while Shawn stayed here to work and take care of the girls, with some help from Uncle Mike! Her surgery was a bit delayed so she didn't get back to the OR until about 2:45. I was so stressed about this surgery because she has made such great progress in the last few months (emotionally) and I was afraid this would set her back.

She did pretty good waiting all day without eating, for the most part! 
Here are some pictures of her waiting to go back! 



Here she is once we got back to the preop room. She was not too thrilled about the socks she was supposed to wear and took them off 48 times before I finally gave up :) 



We were told it would be about an hour longer than expected and although Sofia was doing great, my Mama instincts told me this Ticking Time Bomb didn't have an hour left in her! Who can blame her, she hadn't eaten since 9:00pm the night before and it was now about 1:30pm! 


And, as I predicted, the time bomb went off and this happened: 

We regrouped, snuggled and I sang "You are My Sunshine" (her favorite song) about 32 times and it was all good! 



They almost forgot the premed to help her relax before going back to the OR. It made her silly, but not sleepy at first so I was worried!!! By the time we got back to the OR it had fully kicked in and worked PERFECTLY!
She did pretty well since they let me go back to the OR and they gave her some meds to calm her before the surgery. They worked so well she was pretty docile in the OR, except when they put the mask on her to go to sleep. She went out fighting! At my request they also allowed me into the recovery room before she woke up from anesthesia which also helped immensely! I have found that my girls (especially Zoya and Sofia) have a much higher level of "medical anxiety" and have a much harder time with the separation that happens during surgeries. Zoya has gotten much better over time, but Sofia is in the depth of her trust-building and I knew it'd be detrimental for her if she woke up in recovery without me there (heck I can hardly go to the bathroom at home and leave her in another room at this point!).

I was thrilled to see her still asleep when I went back! It took her a bit to wake up, but that was fine with me because I knew I'd be there when she woke up. 


The nurse couldn't believe that she didn't wake up screaming and crying! She said 90% of their 2 year old patients who have this surgery wake up screaming bloody murder. Honestly, I'm shocked she wasn't screaming as well! She was pretty clingy and demanding once we got to our room. Nothing was making her happy and I literally could not MOVE (not even my eyeballs) without her getting upset. After a few hours she settled down. We had a roommate for the night who had quite a few "visitors" which Sofia did not appreciate (neither did I). Luckily both Sofia and her roommate slept pretty well overnight with no crying! I slept with Sofia and she literally had to have at least one hand on me at all times. For much of the night she laid half on top of me so I couldn't move...I'm pretty sure that was her plan! :)
For a while after surgery if I tried to take a picture she kept turning her head. I think she was a little POed at me! 


Looking at herself in the phone camera! Blue tongue from her slushie! 




She started looking sleepy and I thought, this is too good to be true! 

Sure enough it was ;) By the time the nurse came in with her "before bed" med dose, she had gotten a second wind! 


After a bit she wore herself out though :) 

I snapped this pic the next morning when she was snuggled up to me. I did take a few punches to the nose and kicks to the ribs overnight, but I think she was happy to have me by her side! 
At least she found comfort in her Mama! We had an AMAZING nurse for much of the night so that made our night go much smoother!!! She slept the entire 2.5 hour drive home and rocked her recovery until TODAY. She's struggling today, but still eating and drinking enough that I'm not concerned. I just feel bad she's in so much pain!

Day 1 post op, rockin it!: 

Day 2 post op: "Who just had their tonsils and adenoids out??? Not ME!" 

Day 3 post op: snuck right up and sucker punched us!!! 

Even though she wasn't feeling hot, once her motrin kicked in she was willing to eat some scrambled eggs and ice cream! She had a rough morning and is napping now. I'm praying today is her worst day for recovery (although I know days 5-7 are usually the roughest). 
Here's hoping Sofia feels back to herself in no time (or, wait, should I be wishing that???? ;))

Tuesday, March 25, 2014

Sisters







 I'm so thankful that the Lord chose these 3 to be sisters! Watching their relationships blossom is such a beautiful thing! I'm thankful that through adoption they've not only found us (and we-them), but also that they've found one another! My 3 beautiful girls' hearts are growing inseparable! 

Monday, March 24, 2014

Sesame Street Live!

 We took the girls to see Sesame Street Live! A wonderful friend of ours (who used to be IN the show!!) arranged for the girls to be able to meet some of the characters before the show! You would have thought they were in heaven!!! It was such an amazing opportunity and we are so grateful! Zoya had the shock factor going on for quite some time...she looked as if she was thinking, "You've GOT to be kidding me, I've waited my WHOLE LIFE to meet these guys!" Mila preferred to visit from the safety of our arms (and try to poke Rosita's eyes), and Sofia-well she shocked us all by LOVING the characters and going right to them. We had to pry her out of their arms when it was time for the characters to get ready for the show!!!! 

Pre-Show pictures :) All 3 of these shirts were Zoya's at one point :) Zoya and Mila are about in the same size shirt these days ;) 

Uncle Bub (yes he rocks!!!) made the drive again to keep our successful 1-1 ratio going :) 

The first character they met was Rosita!! She was Zoya's favorite...and Mila's (if she had to pick a favorite to save her life anyways LOL)

Elmo and Cookie Monster!!!! Zoya just stood and stared at Elmo for quite a while! 

And Sofia fell in love with Cookie Monster...she only had eyes for him! She seriously could have snuggled him all day long if we let her!!!! Something about feeling safe in the arms of a big blue furry monster!!! We were shocked with how well Sofia did with the characters because she is usually VERY HESITANT around people other than Shawn and I!!! I think with her sensory seeking tendencies, Cookie Monster was the perfect sensory input for her! I asked our occupational therapist if she could come to the next session dressed as cookie monster but she didn't take me up on that! 


Zoya and Cookie! 

Buddy Check! 

Zoya had the time of her life, bustin' a move! 

Mila was really into the show! 

And Sofia pretty much did not move from this position or gaze! She was mesmerized!