Life in survival mode

Life in survival mode means that I can and will disappear from this blog for days, weeks, or possibly months at a time. Life in survival mode means that instead of starting my year off great with goals and fresh motivation I crash from chronic sleep deprivation. I have been sick, I mean really sick as in I get all of the symptoms and it seems to last forever. I'm getting sick like a little school girl and feel just plain weary. Life in survival mode will literally knock you off your feet.

Life in survival mode happens when Em has a bad winter. Since her birth she has had a consistent pattern of good year, bad year during the fall/winter months. Correction-had a consistent pattern. Last year was a long, rough one for her with a whopping 3 day grace period between illnesses and spread well into summer. It took it's toll on the whole family since Emma's sleep is complicated due to the effects of illness on her diabetes, sleep apnea, and asthma. The new fall/winter season at the beginning of this school year quickly proved to be just as UNfun as last year. To date the longest grace period without illness she's had this season is 5 days. Check out Em's blog to read more about my quest to figure out answer's.

My own version of living in survival mode is something that a lot of parent's raising a child with special needs can relate to. Life, unintentionally, merges to a point where "luxuries" are moments that typical families experience on a daily basis. It's surprising how rejuvenating a trip by myself to the grocery store can be now, when it used to be a chore. There is only so much time and space in anyone's life. Mine is now filled with sleepless nights, medical care, behavior issues and everything complicating everything. I start each morning prioritizing the battles of the day because there will be battles. Then end the day fighting my own personal battles complicated by the physical, emotional and financial investments made throughout the day.

Life in survival mode is hard, very hard. I can't wait for summer.

Shopping

Shopping with kids is daunting, shopping with Emma-well let's just say daunting is an understatement. Recently, I went on a holiday shopping trip to an outlet mall with my sister, brother and sister in law. Emma was struggling, probably because it was lunch time and the only source of food in the entire facility was a vending machine. I hope to always remember the kids sitting on the floor with their lunch, it was sad and funny. Chips, m&m's, reece's-it was a great "lunch"! There is this thing kids, even adults, with Down syndrome do. I call it the plop. When they are done walking, they just plop to the floor. It doesn't matter if we are in a parking lot full of slushy snow or in the middle of wal-mart. Em sure was plopping that day and one can only carry her for so long(I need to get a stroller that fits her). My sister graciously offered her stroller and things went a little smoother. But, my comment to my sister was "you know you have a child with special needs when the 6 year old rides in the stroller and the 1 1/2 year old is walking".

Yesterday, I had some errands to run and had no choice but to take all the kiddos along. Leaving during the middle of the afternoon, can mean trouble for Em. That's usually when she'll crash from not sleeping in the night. I mean crash, a few days ago it took me 2 hours to wake her up after she napped for a very long time. So naturally, Em crashed on the drive to the store and I knew it was going to be somewhat challenging. She weighs about 50 lbs now and it feels like twice as much when she's asleep. It is dead weight. I'm not very tall so it's hard for me to carry her for long. Thankfully this store happened to have shopping carts and thankfully she still fits into them. The problem came when I was trying to get her in the shopping cart. It was quite the scene-me trying 3 times to lift her in that cart while she slept like a log. The cart kept moving and for the first time I could not get her in. It was a one of those moments that hurt inside a little bit. I was near tears and felt so incapable when a man grabbed her and started helping me get her in the cart. Even with 2 of us, it was quite the scene and challenge to get her in. His sweet act of kindness meant so much to me. I could tell by the way he looked at her that he knew she had Down syndrome. It was very sweet the way he looked into her face, as if he loved her as much as we do.

They say it takes an army to raise a child with special needs. I guess we can even include shopping. Take notice of the "special" mommies while you are out and about. I know first hand how hard it can be and how even small gestures of help go such a long way for tired, depleted moms.

Thankful

Thanksgiving was an emotional one for me this year and I fought back tears most of the day. Thankful for all of the delicious food that I could keep shoveling in to keep my tears at bay.

I'm not sad, just extremely overwhelmed with emotion because of amazing people who are helping our family. I came up with a little project to help earn a little extra money for the Holidays and was blown away by the support I received. Not only that, but my mom and sister sacrificed their entire day to help me. I felt so loved. Ever since Emma joined our family, we have been a needy family. Needy for moral support, needy for financial support, needy for physical support, needy needy needy. It is one of the hardest things I've ever faced. Recognizing that it is impossible to be able to handle our situation all on our own was a slow and painful process and very difficult to accept. But as I stripped away each layer of pride and dignity and accepted this reality I was able to see just how very lucky we are. Lucky because those around us have stepped up to the plate and helped us. Over and over, we've been helped. I feel so unworthy of such love and sacrifice on our behalf, but also very very grateful. Not a day goes by without being grateful for the service those have rendered to our family. Thankful that one of the hardest things I've ever faced has blessed us beyond words.

Thankful that life has taught me to understand what Thanksgiving is really about. I use to dream and envision about what I wanted in life and can even say I had my dream house planned out. Jeff and I used to have so much fun drawing it out on paper. I don't even know that girl anymore. Hitting rock bottom, more than once, can really open your eyes to what you really want and need in life. What a treasure and blessing to learn.

Thankful for my children and all that they are teaching and giving me. I can be disappointed with myself a lot. I never finished college and feel more than inadequate when I learn of others amazing achievements. But then, I see my 3 blonde beauties and wake up to find that I'm accomplishing and learning more from them than any other thing in life. I did want to pursue nursing at one time in my life. Through Emma, I get experience that on a daily basis. Madison has taught me to be strong when I don't feel like being strong. So many times, I need her help in distracting Emma out of a meltdown. She always has the special touch and she never complains. She frequently cries over all that her sister has to go through and is wise beyond her years. I still have so much to learn from her. Abby, with her perfect joy and innocence gives me a smile on my face everyday. She still says and does the funniest things and I'm so thankful for that daily dose of medicine.

Thankful for my husband. We celebrated our 10 year wedding anniversary in May. I was emotional that day too. Emotional because we are beating the odds and still together. After years and years of trials and hardships, we love each other. Real love, not the kind that comes so easy through dating and physical attraction. The kind that we've earned by fighting every day to stay together through some really difficult times. The daily stay at home mom duties take a back seat to Emma and her cares. He never says a word or makes me feel like a bad mom/wife when the laundry is piled up to the sky and leaking into the hallway. Or when the dishes haven't been done for 2 days and the playroom hasn't been cleaned for 4 months(I wish I was exaggerating). A far cry from who I used to be. I used to be super organized and had a house that was spotless. He makes me laugh when I feel like crying and works so hard for his family. I'm grateful for him in my life, even on the days he drives me crazy........

Thankful I can do hard things. I've learned that it's possible to do things you never thought you could do in life. When Emma was born I was given a book that detailed certain things that babies born with Down syndrome might face in life. I was a wreck when I read it the first time, it seemed too hard and too foreign. Recently, I came across that book again and flipped through it realizing that Emma had already been through quite a bit in the book. I was flipping the pages saying "Yep been there, we've done that". It was so normal to me and was not as big of a deal as I thought originally. What a lesson I can apply to many areas in life, things really aren't as bad as they first seem.

Thankful we have a "normal" family. Things get pretty crazy around here, it's just how it is with Emma. When she was first born, I was worried about feeling like a normal family. We have had some not so normal moments and quite the journey to our new normal that makes us a family. But we have it and I soak it up. We still do many things that other families do, but have a few additions like traveling with oxygen tanks and an entire suitcase of medical supplies. We still go to the movies over the holidays. Sometimes we wipe down the armrests with cleaning wipes and usually check Emma's blood sugar by the light of one of our cell phone's during opening credits. While driving to see Tangled over the weekend of Thanksgiving, I looked back and saw my girls in their excitement. At that moment, I realized again, that we are still a family. Through all of the craziness, exhaustion, meltdowns, illness, etc-we are still a family.

So very very thankful this year.

Laughter is the best medicine

Emma's cold turned ugly. The last one was brutal on her sugars and this one only mild sugar spikes(is 300 most of the day mild?) but major breathing issues. She can hardly breathe through her nose right now which makes it easy to see why nights are loooooooong. This girly has severe sleep apnea, which in her case, her tongue blocks her airway when she sleeps. Pretty sure it would be hard for anyone to rest peacefully if you could barely breathe through your nose and mouth. The cherry on top is her asthma, breathing treatments around the clock right now. In the middle of the night that didn't even seem to do much good.

I got 3 hours of sleep last night and less than 2 the night before. I can hardly call it sleep since Emma needed constant positioning to keep her airway open. Same goes for Emma, but you wouldn't know it with her fireball energy. She really amazes me. I on the other hand, was a real peach today until my girls started making me laugh.

Here are two of my favorites from the day:

While planning Santa lists this morning, drawing names for a present exchange was mentioned. Abby replied "But I can't draw the A", it was too cute. She was just being honest, she really can't "draw" an A!

Tonight Madison was saying her name over and over and then blurted "Hey my name would work in Japan" followed by "Konnichiwa Madi-son". I have to give her props, her accent was top notch. Sounded just like Mr. Miyagi.

A little bit of laughter went a long way today. It was the perfect antidote for a "maxed out" mama. I'll probably need it tomorrow-Em just woke up after 20 min of sleep and it's not even 10 yet. Here we go again-sigh...........

Discovering Myself

Let's face it, we all struggle in one way or another and probably in many ways.

I made an amazing discovery today about one of my own. While running this morning, I was thinking about how much I struggle when I run. I get a side stitch every time. I used to never get them, and ever since the first one, I can't get them to stay away. I love the accomplishment of a good run and crave the runners high. But, man oh man I hate running. Some people love it though and I've wondered why every time I run. While running today, I realized that I am much better at surviving in the special needs world than I am in the running world. The hitting, meltdowns, high sugars, low sugars, and illness are all exhausting but fit me better. It's something hard that I can do.

It almost doesn't make sense right? Do I cry? Yes. Do I fall apart? That's a big fat yes. Do some days feel like too much? Yes. At the same time, I am able to do this. This is my path to run on. A thought I had was that I'm not built for running. I'm built for the world inside the world-the special needs world-the Down syndrome world. For a girl that has struggled with confidence her whole life, it feels good to realize I fit somewhere.

Bad Day?

Whenever I see an ambulance drive by with blaring lights and sirens I always-always- say "there's somebody's bad day". I say the same thing whenever I see Life flight in the sky. I can't help but wonder who it might be or what they are going through. I can't help but wonder if they have loved ones frantically racing to the same location. I can't help but wonder if they are traumatized and scared that they maybe just said their last goodbye and gave their last kiss.

6 years ago, almost to the day, I had a bad day. A little more than 24 hours after giving birth to my new baby girl, a nurse called me in my hospital room from the NICU at 3 in the morning. I still remember what she said "Emma needs you". Jeff wheeled me up there and in a whirlwind the staff was guiding and prepping us about the severity of the situation. We were given a camera, a box with special things that could remind us of Emma and gently encouraged to call our family. In what seemed like no time at all, my parents were there and Jeff's parents were there. It was a horrible, scary time and yet special as the 6 of us gathered around her. Giving kisses, taking pictures, saying goodbye. We chose life flight to Primary Children's as a last resort. With the helicopter en route to pick Emma up, I frantically discharged myself from the hospital so I could try to beat the helicopter to Primary Children's. Jeff's parents were going to stay there with her until they transported her to the roof. Just before I left, the nurse over her that night, handed me the blanket that was next to her so I could "smell" her. I remember a nurse on the Mother/baby floor was helping me throw stuff in my bag and handing me a bunch of papers to sign. I didn't even fill them out, just signed my name. I don't remember much of the drive except how scared I was and my dad driving really fast. The helicopter caught up to us and I remember looking up and wondering if my baby was still alive.

By a miracle, Emma was doing better after transport. I remember seeing the life flight team walk by the room I had to wait in. One of the flight nurses saw me in my frantic state and came in to tell me that Emma did better than she expected her to do while in transport. I will never forget how she took that time to comfort me, even if it was for a moment. Miss Emma survived, obviously, but I have that bad day forever engraved in my memory. I don't want to forget. It helps to remember on the days that I think are bad, especially when not every outcome is positive like ours.

Right now, some people I care about are having a lot of bad days. My friend Niki is becoming an expert in bad days, along with her son-my buddy Cole. Another friend, Kassey, is joining the "special mommies" club. Her unborn baby, Mackinley Ann, was just diagnosed with Trisomy 18. If you know little about Trisomy 18, it has devastating statistics/high mortality rate. Loved ones in my life are also battling other kinds of bad days.

Hoping to remember that my "bad days" are not as bad as they could be. Hard and stressful, but not bad.

A Perfect Ending

(photo courtesy of melskitchencafe.com). My favorite foodie.

I've had Emma home sick since last Wednesday and I'm telling you the strongest of people would feel crazy by now. Love her, but she can be HARD to take care of-especially when she's sick and her sugars run rampant. This is nothing new, a sleep disorder and increased incidence of illness are major factors of her challenging behavior. I understand a lot about what is contributing to the way she acts on a hard day, but it still wears me thin. It wears the whole family thin. Several days of this will produce what I call "a crash day". It was 5+ days today, so the girls and I were feeling the "crash". Crash day, combined with Dental and Doctor appointments, felt just shy of madness. Really. Normally, a crash day will consist of pajamas and movies all day long. I'm not lying when I say it's the most I can do on some crash days.

Before Celiac disease entered our life, a day like today would end with a trip through the drive thru. On my way home from our last appointment tonight, I realized I couldn't just stop somewhere and grab dinner. I felt an emotional battle. For me, going gluten free, killed simplicity or what was left of it in our life. I came home bound and determined to find a solution for hungry, ornery girls and a depleted momma.

The solution-breakfast for dinner. Pancakes(gluten free of course), scrambled eggs and hot cocoa were winners tonight. The girls inhaled every last bite without a word of complaint. It was the perfect ending to a cold, blustery, crazy, draining, "crash" day. I so needed it.