Playing a board game with Allie tonight, I told her  remember at no one like a sore loser. She quickly replied, “Then try not  lose this time”!

Kids keeping it real.

This was a question posed by one of my Liebster award-givers. I was thinking about it over the weekend and found the real answer (i.e. Not Catholic Guilt!).

If you could have one wish that didn’t earn you money and didn’t magically fix something, what would it be?  

It would be to have a diagnosis for Boo. It wouldn’t magically fix her or earn me money. It might earn an enterprising young med student his degree, but it wouldn’t “fix” Boo.

It would however, provide a compass. It would answer if we have Boo in the right therapies. What her prognosis would be. If she will continue to grown at her own rate or remain a peanut. If she will live alone, assisted living or need 24-hour supervision. Will the remaining hole in her heart remain benign or will she need surgery. Will she continue to turn blue in the cold or will she be able to play outside if there is a chill in the air.

I don’t have concerns for Allie. I know that she will find her niche in life. That she will be happy and successful in whatever she puts her mind and dedication towards. But I am concerned that Allie will be responsible for Boo after we are gone. I know that Allie will live on her own. When she is 18 and going to college. If she doesn’t go to college then when she gets a job. Either trajectory, it will be just that. A trajectory.

With Boo I don’t know if or when she will plateau. I question her life span. I wonder if I am doing enough to set her up for success.

Her genetics and neurologist tell me that the science will be available in the next 3-5 years to tell us “what” is “wrong” with Boo but not what it means. We might know that XAB chromosome is damaged but not how it will affect her. That might it might take another 5-10 years to know her prognosis. By that time she will be 15 years old. And then it will be more of what we have done than what the science says which will have impact on Boo.

So, if I could have a wish that wouldn’t magically fix things it would be two: One, for a diagnosis and two for patience to wait for one.



 

Today Boo woke up on the wrong side of the bed. Well the floor, actually as she had fallen off her bed and onto the floor. But still, not a good start. She still isn’t feeling well and it snowed last night.

Boo does not like snow. She told Allie, I NO LIKE (see another sentence, she is making progress). It was only a dusting of snow, it should not have wrecked her morning. But combined with the fall out of bed (the fall was less than 3 inches, by the way) getting ready for school this morning was not fun.

For any of us.

As I am running after everyone trying to get out of the house and be on time I lost Boo. She was hiding with Bailey our crazy puppy.

At least they were out of the cage this time, right?

I have heard that moms with special kiddos isolate themselves because they feel that ‘normal’ parents won’t have empathy, patience or understanding. We really haven’t done that with Boo, but we had Allie first. So the relationships were already established. We are also lucky that we have a tight-nit group of friends who can go six months without speaking to one another, but in an instant pick up where we left off. (Establishing Girls Night In also helped)

So maybe we “special parents” are not isolating ourselves, but rather being isolated by those who do care about us (and I do believe they do). I think they isolate us for a couple of reasons. 

The first is that they do not want to burden us with their own troubles. They worry we have too much on our plate and feel guilty adding more. These friends do not get that we need to feel more than Boo’s mom/therapist/taxi driver/pharmacist. This I know to be true, in my case. A friend is going through a divorce and didn’t feel she could burden me. I don’t think that friends understand that I have to be more than Boo’s mom. I need to be Kerri. As much as I need to lean on them, it has to be a cooperative exchange.

The second reason is scarier to me. They do not want to “be” us. They do not want to look at their child and wonder that there might be something wrong. That they are lucky and (your know some do) feel that our children are spoiled/misbehaved. They want to see the perfection of their own children. Never realizing that our kids are perfect too. Some feel guilty for their ‘perfect’ family. Others feel self-righteous. And still others feel that there might be something wrong with their child, but if they are not exposed to Boo and my out-there with her struggles they won’t have to admit it.

I count myself lucky that I have a circle of friends who love us because of Boo, not in-spite of her.  What is your opinion, Do we isolate ourselves or are we isolated by those who once were our friends?

We had the best weekend. It just wasn’t quiet and relaxing. 

On Saturday we had dinner with friends. There was a dinner I didn’t have to cook, dishes I didn’t have to do, good friends and wine. Added bonus, I managed to kick the kids butts in Twister (at 42 I still got it!).

On Sunday, a day I was sure going to be a day of rest. Well….

Allie got invited over to her Crafty Aunts after Church. Husband decided to go to the movies with friends. (Zero Dark Thirty. He couldn’t understand why I didn’t want to go!). It was just Boo and I. I decided to tackle Allie’s room. It was a disaster area. 

You know what they say about good intentions right? Well, they haven’t tried to clean a room with Boo and a crazy puppy. But we did it. It is clean. Then I had the bright idea of surprising Allie by putting glow-in-the-dark stars in her room.

Picture it now….me, a step-ladder and Boo. Who do you think won?

CRASH!

And Boo laughing: MOMMA BOOM! AGAIN!!! (I am thinking woo hoo a sentence as I lay under the step ladder)

I see a pedicure in my future for next weekend. Who’s in? 

This week I received four Liebster Awards. I am overwhelmed by it all.

I started blogging as a form of therapy. I needed an outlet for what I was feeling, my struggles and my joys. Life with Boo has been eventful to say the least. I thought it would just be about Boo. But Allie keeps things so real that the blog became about her too. (She is kind of a scene stealer)

I stumbled on Love that Max thanks to a top blog award in Parents Magazine in 2011. Ellen’s writing spoke  to me, but it was really thinks to her Friday link-ups that I began discovering that our family was not alone. I know, at some point, we all think we are in the worse situation ever. I frequently comment that how I keep my calm is seeing other families in waiting rooms.

But those families, I do not know their struggles or joys. They are just faces you see in waiting rooms. With the Friday link-ups I found people, not exactly like me but going through this special world with grace and humor. Humor is a must for me.

While I thank Kristi, Misty, Mama and Alana for the recognition, I really thank them for their blogs! Without them and the blogs I passed my award onto, I would still feel alone in this overwhelming special world. In October when Michelle hosted 31 for 31 Challenge I joined up. Not because Boo has Down Syndrome, but because the techniques that are used for DS Children work for Boo. It made me see, once again, that although Boo is undiagnosed she shares a lot of traits as kids with DS, Autism, Sensory issues and (ew) bowel issues. 

Just like every person is different, every special child is a journey in and of itself. Where we find commonality is with the struggle to get our children the tools they need to live life to the fullest.

So keep reading and commenting! Your advice, experience and humor help me navigate this world.

Thanks,
Kerri

Thanks to Mama Meerkat for giving me a Liebster Award!

It’s so pretty

Since I already established that I am a rule follower, here it goes! My questions from Mama:


1. What got you first interested in blogging? To me, it was a therapeutic outlet. I had finally found moms like me and realized I could connect more if I shared what we are going through.
2. If you could take a vacation anywhere, where would you go? Africa safari
3. What is your favorite genre of music? 80’s hair-band rock. You know how when Def Leopard comes on and you still scream the lyrics at the top of your voice? That is me in the car next to you!
4. What is your favorite hobby? Hiking
5. Are you a morning person or night owl? I am a mid-day person
6. What is your favorite part of your day? 8pm, when both girls are in their rooms and the glass of wine is poured
7. Have you ever gone scuba diving? Nope. I tried to snorkel once and thought I was going to drown.
8. Are you a cat person or a dog person? Dog
9. How do you feel about flightless birds? I feel bad that they haven’t figured out how to use their wings. Wings would be so cool.
10. What is your favorite thing to cook? Spaghetti sauce, from scratch not a jar and then Calzones with the leftovers
11. Did you think these questions were a little weird? Nope, I just wish you had to answer them back 🙂

I knew better. I swear I did. I should have listened to my gut rather than my bank account. Boo was up all night. Runny nose, sure. But more importantly she was constipated (you can file that part of the story under TMI). 

I sent her to school anyway. Because I had to work. Because I, again, put work before her well-being. Of course, husband did too but I think he is exempt from that rule. She lasted 2 hours before the school called me. They know and understand her bowel issues. But this was different, they said. 

So I left work and picked her up. I walked into the crazy puppy had destroyed Allie’s fairy house and peed the floor. Karma, bit my butt I guess. The rest of the day was spent in this position. The only position Boo could find comfort.

I’m thankful Boo doesn’t hold a grudge. 

Wow. I just realized that people read my blog and like me. A Boy Named Silas is a boy who we should all try to emulate. He just doesn’t seem to get down. And his mom awarded me with a Liebster.

I’d like to thank my mom for teaching me how to read and then write!

I do not want to bore you with 11 more things about me. But I do want to brag some more about other bloggers!

Have you read I can Say Mama?  Not only is she not Martha Stewart, she is a real person who sees the best in life.

Another favorite is Michelle at Big Blueberry Eyes. I love that she is so proactive in the Down Syndrome Community. And also that she shares tips that seem to work with Boo 🙂

So here are my question’s to answer from Silas’ mom!

1. Think of the day your child received his or her diagnosis. What is the first word that comes to mind? Boo doesn’t have a diagnosis. After 4 years we do not know why she suffers from Booitis (my pet name for it). I think at first, though when told she would be “special” the first word that came to mind (is sadly) despair.
2. Who is your favorite doctor, specialist, or therapist for your child and why? I don’t have a favorite therapist, they all rock and have become great friends. My favorite doctor would be our primary pediatrician. Probably because he comes to the office in flip-flops if you catch him on a weekend.
3. What symptom of your child’s disability breaks your heart the most? Constipation. Because there is no way to relieve or explain her pain.
4. What symptom of your child’s disability is actually somewhat endearing? Her stubborness. She just WILL NOT give up
5. What is something your child is REALLY good at? Hugs. She seriously gives the best hugs.
6. In three words, describe how you have changed after becoming a special-needs parent.  I gained patience.
7. How has having a special-needs child impacted your spiritual life? It made me question more why God lets children suffer. Even though Boo suffers much less than most. (I still don’t have an answer)
8. Would you take away your child’s disability if you could? Why or why not? I think I would. Because just like I would like Allie to be a Harvard Grad, I want Boo to have a life without pain or difficulty.
9. What is the most disrespectful thing anyone has ever said to you or your child? I have been lucky. No one has been really disrespectful.
10. “One thing I wish more people realized about my child is …” That she will not ‘grow out of it’ and “become normal” and we are okay with that.
11. If you were to articulate all the wishes you have for your child, what would they be? Seriously? How much time do you have? For both girls I want them to be the best they can be. If it means Allie becomes a Harvard Grad, bonus. If it means Boo goes a day without having to work so hard, even better.

Thanks again, to Silas’s mom. Her blog rocks and you should totally check it out. I would renominate her, but I think that is against the rules!

I am actually speechless. A little overwhelmed, a lot grateful and well mostly speechless. (My husband would never believe I could be speechless). I was nominated for not one, but two Liebster Awards. One from Kristi @ Finding Ninee and the second from Misty @ Meet the Cottons (she has another blog, too that I love called Take it or Leave it which you should totally check out).

So here it the deal. With the Liebster Award I have to do some work. Not just brag about my girls or vent about the world. The first rule, is done I send a heartfelt sincere THANK YOU shout out to both Misty & Kristi (sounds like they should be twins, doesn’t it?). And I have to show the beautiful award.

Okay, I am so impressed that I figured out how to do show the award!

And now the easy part, bragging about the blogs I love and rely on to keep my sanity and sense of humor.  A Liebster Award is an acknowledgement that your blog rocks from another blogger. Okay, probably not the Webster’s Dictionary definition, but what I believe I to be true about the following blogs. It goes without saying that Misty & Kristi are in my top 7 but since I already gave you those links, here I go….(in no particular order, I go to these all daily)

Big Brother, Little Sister and the Baby first, because Coop is freaking adorable. And second how can you not love to follow some one who lives half-way around the world, remains upbeat and has three kids with the best names possible!

Anybody want a peanut? I love how Jen is brutally honest about her families struggles. I like knowing that although my Boo doesn’t have autism we face the same type of hurdles. I found her blog when I thought she was quoting the Princess Bride to describe her life! 

Musings of a Marfan Mom, I confess to not even knowing what Marfan Syndrome was before discovering Maya. I enjoy how her blog includes her own struggles, her sons’ and now her adoption journey. It is life, complicated and she seems to excel at it!

From across the other pond, Looking for Blue Sky. Partly because she seems to get my sense of humor and partly because I love the Irish 🙂

Ever feel like you could live the dream? Go check out Susan at Trout Towers. Her kids are perfectly normal, it is the one blog I read that has nothing to do about special needs. Even though her kids are normal, she has a unique bent on life.

A new find, is livenowandzen although I have no idea how to pronounce it. But trust me, anyone who can apply my favorite all time movie (The Princess Bride) to this special life we lead is a rare find!

Last but not least, Flannery over at The Connor Chronicles. Again, we seem to have the same sense of humor. I love how she looks at her son and sees a kid with autism. Not an autistic son. And yes there is a difference.

Now that the bragging is done, here I need tell you 11 things about me. You might not find them interesting, but rules are rules.

1. I am a rule follower.
2. I believe in disciplining my kids.
3. I do not believe that just because Boo is Boo that means she can be a holy terror. And neither can Allie but my patience threshold with her is lower.
4. My kids eat healthier than I do
5. I wish I had straight hair
6. I love to read. Just no particular genre. Some days it is Percy Jackson and some times it is War & Peace
7. I refuse to read 50 Shades of Grey because my mom  and Tia’s step mom told us it made them hot
8. I have only told 2 friends about this blog
9. I love Irish Pubs, but I don’t drink beer (in fact I have never had one!)
10. I think kids should go to school year round. Not that I don’t love them. But working and having to find surround care sucks.
11. I sometimes take the long way home so I can have 20 minutes where I don’t have to be polite, nice or talk to anyone.

The next part is tricker, because I was nominated by twice I have to answer twice as many questions (sorry if you are bored). 

1. What is your secret dream? To travel around the world
2. What does your significant other not know about you that a friend does? Just about everything! Including this blog. I told him once, in an Irish Pub, but I don’t think he remembers
3. If you could have one wish that didn’t earn you money and didn’t magically fix something, what would it be? This question is impossible! I think it might be to exorcise my Catholic Guilt complex.
4. How would you describe your personal style? Trying to be fashionable but failing miserably
5. What three words do you think your closest friends would use to describe you? Funny, Tiny and Fierce
6. If your house were on fire, and your family and pets safe, what three items would you attempt to save? My antique china doll, Boo’s stuffed puppy and whatever cash was lying about
7. Do you believe in plastic surgery? Not for me, but like abortion not my call for you.
8. What’s number one on your bucket list? To hike the Knife’s Edge
9. If you had one hour of secret free time, how would you use it? I would play Words with Friends and get a better score
10. Beer, wine, mixed drinks, water or soda? Wine, Pinot Grigio please if you are pouring
11. Are you afraid of the dentist? Hell yes
12. Name a food that you would not eat as a child, but enjoy as an adult. Lobster (my mom told me I didn’t like it because we couldn’t afford it)
13. What was the last movie you watched or the last book you read? Last movie, American Reunion (sad, but true) last book Threat Vector by Tom Clancy (does it count if I am in the middle of it?)
14. What is your favorite Girl Scout Cookie and why? I don’t have one, although my Husband is addicted to Thin Mints
15. Do you have a favorite movie soundtrack and what is it? I don’t think I do
16. Are you “a little bit country” or “a little bit rock and roll”? A little of both, I have them on my radio presets
17. Do you think it’s weird that I sort my dirty laundry? I don’t think it is weird, but sometimes the smell is bothersome
18. What is your favorite ice cream topping? Fudge
19. What word do you almost always misspell? Anything with “i” before “e”
20. Do you have pets? Crazy puppy
21. Words to live by. I love you no matter what
22. Are you a social butterfly or a recluse? This is tough, I used to be a recluse and now seem to be a butterfly!

HAHAHA this is the fun part, now my nominees have to answer my questions:

1. If you could change one thing about yourself what would it be?
2. High heels, sneakers or flip flops?
3. The Beach, the City or the Mountain?
4. Who is your favorite singer/group?
5. If you could vacation anywhere (expense is not a consideration) where would you go and why?
6. Do you mind that my blog is sometimes snarky?
7. What is one thing we would be surprised to know about you?
8. Favorite, guilty pleasure, TV show?
9. Favorite book or author?
10. Do you admit to having a favorite child?
11. If you could replace your life with one from the Disney Channel which show would you pick?

Wow, this was harder than I thought, but a lot more fun. Thanks, as always for stopping by. I hope you come back soon and learn more about our life. Kerri