Adjusting..again..

A week ago, we bid farewell to our oldest child, Ashleigh who is soon to be 25yrs old.


Quite some time ago, Ash decided --- since her 4yr Bachelor's Degree was not landing her a worthwhile job --- that she needed a new chapter in her life. She wanted to continue her education, without having to go deeper in debt in order to pursue her Master's Degree. And so,,, much to our disliking (although we NEVER voiced that to Ash. Honest!) she joined the United States Navy!


We are very proud of her for making this decision. Proud that she is such a determined minded young lady. Proud that she is brave enough to endure the physical and mental aspect of "military life"! However, life around here is once again...an adjustment. From buying groceries, making dinner, doing laundry (less, much less laundry!) to not having our very talkative, soon to be 25yr old exhausting us with conversation!! Someone once asked me, "does she ever stop talking?"To which I replied..."No. I can't even remember a time that she didn't talk!"

Saying goodbye to Ash was harder than I had imagined it would be. Last Monday, she had to report to a hotel in the Lansing (MI) area at 7pm for a briefing. We decided we'd go to dinner at her favorite restaurant, Carrabba's..which is just around the corner from the hotel. Ash dropped us off and headed to her mtg. Around 8pm she was back at the restaurant where she enjoyed her favorite meal. At 9:30pm (she had to be in her room by 10pm) Paul and I dropped her at the hotel. It was so hard to see her off. I haven't had that much emotion pour out of me since that horrible day in April 2010. I had that sinking feeling in the pit of my gut..again..I had uncontrollable tears..which I had hoped I wouldn't have. I didn't want to make Ashleigh feel bad. But, I just couldn't help it. Bless her heart, her last words to me that night were, "Love you mom. It's going to be okay. It really is."

As we sat and watched Ash walk into the lobby of that hotel, Paul and I both just sobbed. I didn't stop until we were 25miles away. That being said, once we headed out of the hotel parking lot, this song came on.



This was one of Carly's most favorite Miley Cyrus songs. One of MANY favorites. This song would come on the radio, while we would be driving in the car..and if Carly had happened to fall asleep, she would instantly wake up and start singing and bopping around in her car seat. She did it every. single. time. without fail! And even though the name of this song is, Party In The USA, Carly referred to it as the "butterfly song"

I mean, come on..at the very moment we pulled out of that parking lot, this song comes on the radio?!?! I think that's a pretty good sign from our little sweetheart. Telling us she is right here with us, watching over her "sissy" and all will be okay for Ash and us.

I just know that Carly has her arms wrapped around her "sissy's" neck just the way she always did.. See??!!??

On Tuesday morning, September 20th., bright and early...Paul and I headed to Lansing to see Ashleigh be sworn in and to hug her one last time..for who knows how long. But, we didn't see her sworn in..she had been sworn in weeks ago. The little stinker didn't tell us that! Oh well, we still wanted to see her off so it was not a morning wasted. Not by a long shot! About 12:15pm, she boarded the bus that would take her to Illinois, where that new chapter of her life would soon begin.

Ashleigh did call me when she arrived on base. Unsure of the phone she was using..they weren't allowed to take cell phones. How she will survive 9weeks without her beloved cell phone is beyond me! Anyway, she called just to say that she made it and she wouldn't be calling for at least 3 weeks. She also said that she'd have her address for us in a week or so. The call lasted a whole 48seconds. I was happy and somewhat at ease knowing she was there.

As we face yet another adjustment in our family life. Again. I take much comfort in knowing that Carly is watching over Ashleigh. I just know that she is.

Think Before You Speak

Dear Friend, today you broke my heart,

In a place that was unbroken.
You did it with your thoughtless words
That should not have been spoken.
You know that I am grieving,
That my pain is deep and real.
Your hurtful words pierced like a knife.
How do you think I feel?
You may not suffer from my loss
Or share this lonely grief,
But I'm mourning my baby,
Who's life was much too brief.
I'm sure you don't know how I feel,
I don't expect you to.
Don't ask me to get over it....
That's something I can't do.
Without grief, there's no healing
It's a journey I must make.
It's not the path that I would choose,
but one I'm forced to take.
No matter how you choose to see
What I am going through,
I need compassion and support....
I'd do the same for you.

~ Angie Robbins Sexton

This is a poem I found by way of one of my online grief support groups. I thought I'd share it with you all. And boy, does it ever speak volumes. So many people I've encountered in the past 17months, have said things that are not so sweet. Just not nice. Things that just do not need to be said. Now, I know I'm suppose to have a 'thick skin' but seriously....WORDS do HURT...and hurtful words are multiplied by numbers that are way beyond existence, when you are a grieving mother.

It's Friday, the 23rd of September...

The two days that I hate the most--Friday's and the 23rd of each month. Today happens to be both of those day. It also marks 17months since I last held my little girl. 17months.

Often times I kind of blank out..for lack of better wording...and find myself thinking, there is no way this could have happened to our family, no way is our sweet little girl gone. I can't begin to explain the wave of sadness that washes over me. It's that feeling of your stomach dropping suddenly. Arms go limp. Head gets fuzzy feeling. And, you can actually feel your heart skipping beats. It's terrible.

Every Friday my mind goes back to that horrible day in April 2010. Every. Single. Friday. I relive that day every week. It's like rewinding a movie..it just plays over and over in my head. I can recall every single minute of that day.

I kick myself every day, over and over again for not climbing in the back of that ambulance. Not that I could have done one thing to help...although I would have been on my cell phone calling Mott's/cardiology..which I guess, could possibly made a difference..being as the EMT was a complete freaking idiot! I had a friend tell me, "Jonesey (she always calls me Jonesey) you weren't suppose to be in that ambulance." Maybe she's right, but I still wish I'd have climbed in with Paul. I did actually climb in, to kiss Carly and say, "mama loves you. I'll see you in a little bit."

I have been asked by a few people how I am doing..really doing. Well, my answer would have to be ~ I am lost. I have no idea who I am anymore. Even tho., I'm not "alone" I sure feel alone.

If you've ever been lost in a corn field you can kind of relate to how I feel on a daily basis. It's actually pretty similar. Except, when one is lost in a cornfield, they eventually find an exit point and make their way out..I keep going around in circles, making all the wrong turns and it seems to me, that there is no exit point in sight. So, in a nut shell, I'm not doing okay. Although I have learned that most people do not want to see that I m not okay. So, I learned how to wear a mask to hide it all. I think I do a darn good job. However, if you look into my eyes..really look, you'll see nothing but sadness. It's there, even I can see it.

As far as I can tell, being 17months into this miserably sad life, it does not get any easy trying to navigate through each day. I still HATE waking up each day. I HATE nighttime. I HATE seeing the bus stop at the neighbors house each afternoon. I HATE that it's been 2 full summers since I played with Carly outside. I HATE going into a store, seeing all the cute little girl clothes and the toys and books and candy at the checkout. Anxiety attacks still overpower me in the store. In fact, I've read many books that confirm, a grocery store is one of the most common places for a bereaved parent to have an all out anxiety attack. Yep, I carry my med's with me and usually have to pop one while in the store.

Anxiety and panic attacks are my best friends now..some friends eh? But, they are both there, without fail, all. the. time. From going to the store to doing laundry. They are a constant now in my life. I don't particularly like either of them, but they are in my life now and will likely be here forever.

If you notice, I had to add something to my right sidebar on my blog. I know it makes me sound like an all out b!tch, but so be it. I am floored to this day, that people who KNOW what my blog is about these days, would actually take time to leave stupid comments. I've had quite a few that didn't get posted..my blog..my choice! In all honestly, I know that life is rough from time to time, for every. single. one. of. you. From, a sick kid who has had you up all night, to a broken arm, to a bad IEP meeting, a flat tire, a dead car battery...etc...I GET that. I'm not a stupid person. However, at the end of the day, most all of you can and will wrap your arms around your child/children. I can not do this anymore. PLEASE, do NOT come to my blog and tell me how "life is rough for everyone, not just you (meaning me/us)." I'd give anything to have a "rough" life like yours, but I'm willing to bet not one of you would want my life right now. And if any one of you thinks life is soooo bad , try on and do some walking in my shoes. You'd quickly want to kick those shoes to the curb and go back to your whining about IEP's and snotty nosed kids, dead car batteries, etc, etc. I envy each one of you. I'd give my right arm to have a snotty nosed little girl to sit up all night with. And as much as I HATED fighting with the school over Carly's rights as a general education student...I'd do it a million times a day if I could have her back with me.

Most of you will see your children today...I'm going to visit my little girl at the cemetery, as I do each Friday (and several days in between) and the 23rd of each month. Yeah, I'm willing to bet, your life ain't as rough for you as you think it is. Unless of course, you are a bereaved parent.

Everything came crashing down..

Woke up this morning feeling like crap..love days when you wake up and feel miserable. NOT! Most days I wake up sad..so throw in feeling like crap and boy oh boy does it make for a bang up kind of morning.

This past week has been difficult for me. It hit me, that saying goodbye to Ashleigh, our oldest (24yr old) was going to be much harder on me than I had imagined. I dreaded the whole 'goodbye' and feared I would feel just exactly as I did...everything came crashing down, around me. That whole feeling of loss hit me all over again.

Even though I kept telling myself that there is a difference between this loss and the loss of Carly. Everything came crashing down. I know most of you will likely think that there is such a huge difference between these two losses..and you are likely wondering, how can she even compare the two. I know, I KNOW but for a "mama" who suddenly loses her baby girl its kind of hard to separate the feelings of one loss from another.

We had a going away party for Ashleigh, complete with friends and family. It was a GREAT time. I'll do a post on her later this week about her leaving and her party. The night before the party, it hit me. LOSS. The feeling of total complete loss. Again. And even though I tell myself that this loss is a good kind of loss..well, actually I try to convince myself that a good kind of loss even exists...like I said above, it's still a loss. At least in my eyes.

In less than 1 - 1/2 yrs I've lost both my daughters. Yes I KNOW Ashleigh is doing what she needs to do (for those who don't know, Ash joined the Navy) to better her life..and live her life as she needs to and I'm/we are very proud of her for being such a determined young lady. But I still feel a loss. She is gone and even tho I'm proud of what she is doing,,,the fact remains, she's gone now.

Again, my house is eerily quiet. Ashleigh is a motor mouth..which may prove to be a bad thing in the military! Just yesterday I picked up my phone to text her and again everything came crashing down...I can't do that anymore-mainly because she belongs to the Navy now and she had to leave her cell phone at home. I can no longer just pick up my phone to call her or text her anytime I want to, like I used to do.

Last night I received a surprising and very quick phone call from Ashleigh. A quick 48 second call as a matter of fact! She called to tell me that she made it to her base safely and that she will write with an address in a week or so. She also said, "mom, I wont be talking to you for about 3 weeks." I've never gone a day without a conversation with Ashleigh. It's going to be a long 3 weeks for me.

So as I sit here this morning, I have come to realize...our life has to find another new normal. I can't even begin to tell you all how I HATE new normals. HATE them with a passion..and you guessed it, everything came crashing down, again.

September....

...is Childhood Cancer Awareness Month.

I've been laying low when it comes to blogging. Haven't had the desire to sit down and just do it. Call it self pity, laziness...or just simply neglect, I've just avoided it all together. I have managed to check on a few of my friends blogs. But, checking on them has been few and far between too. In all honesty, I've tried to avoid all the "back to school" posts. Although I am so happy for all my little Down syndrome (Ds) friends, as they venture on toward another year of school, learning and fun. Again, call it a little self pity, but my heart aches just a little more..knowing that my girl isn't among that group of back to school--ers.

I thought I'd sit down and blog about something that will always be a part of my life. Childhood Cancer Awareness. In case you missed the title of this post, September is Childhood Cancer Awareness Month.

Many of you know the story of Carly and her diagnosis of cancer. Acute Lymphoblastic Leukemia (ALL), on Sept., 25, 2004. Trust me when I tell you, NOTHING and I mean NOTHING can prepare you for the words, "your daughter has cancer". It knocks you down. It brings you to your knees. It takes the wind right out of you. Especially if you had no idea that your kid has about 80% greater chance to develop leukemia than the "typical" child.

Unfortunately, leukemia is not something that is all that uncommon among the Down syndrome (Ds) community. How on earth my family went for nearly 2.5yrs before finding out that Carly had a much higher probability of some day being diagnosed with leukemia is beyond me. But, no one ever told us and we certainly never read about it. We were devastated and absolutely in disbelief and very much terrified for our sweet little girl.

Sadly, I've learned quite a bit about leukemia. I really had no choice but to get educated. Fast! Childhood cancer is scary. VERY scary! The first few days after diagnosis is horrifying. You are given TONS of information. Doctors and nurses come at you and your child from all different directions. It's kind of like watching the cartoon, Charlie Brown..when the teacher is talking to the class, but all 'we' hear is, waah wahh wahh...that's what it's like being bombarded with "cancer" terminology. It's exhausting and overwhelming.

As a parent, you quickly catch on to all the terminology. You learn to how read all the reports. You learn all the different types of blood tests and their importance. You are told about broviacs and ports. You quickly learn how to flush IV lines. You learn all the different types of poison..err I mean, chemo names and their side effects along with the risks associated with the chemo. You are given the 'road map' or protocol of your child's cancer and a treatment plan-in our case, it was 26 months worth of chemo. You learn all the ins and outs of IV chemo, oral chemo, steroids, spinal taps and bone marrow aspirates. You see your child receive blood pretty regularly, especially in the beginning. You see the bag of platelets that are given to your child, when their platelet count is dangerously low. And you see children of all ages, infants thru teens who are deathly sick and fighting for their lives. You see pale white skin, bald or thinning hair, big black circles around these children's eyes. It breaks your heart and if it doesn't, you my friend,,, are NOT human!

As you are thrown into a world that most of us didn't bargain for you quickly learn how the platelets work and why they work and why they are so darn important. Parents learn how the immune system works, we learn all about the absolute neutrophil count (ANC) and whether the ANC is high enough to continue with chemo..or if its low and chemo has to be put on hold until the ANC comes back up to a safer range. We also learn how the white count works with the ANC..the correlation between the two. We are told of the signs of a low red blood count. We are taught to watch our kids closely. Watch for fevers and if a fever does occur, head to the ER if the temp reaches 100.7-under the arm. Infection is always worrisome.

In a way, parents who had no desire to get into the nursing profession,,suddenly find themselves right there in the midst of "nursing". We learn to give shots..although, I flat out refused to do the shots. I had family and friends who are nurses, they came over and gave those shots to Carly. No way in HELL was I going to inflict pain on my little girl. NO WAY! But I was taught and had the need come, I would have done it. I did however, learn rather quickly how to run IV's, flush lines and all that crap. Thankfully, Carly had a broviac (and later a port), which meant she didn't have to be poked by me. Nonetheless...it was awful. UofM always told us parents, "when treatment ends, you parents earn your honorary nursing certificate" I told them, "no thank you, I'll pass!"

Most people do not realize all the different types of childhood cancer. I still don't know all of them. I am however, very familiar with ALL. Lived it. Know it. HATE it.

Being a cancer mom, you learn how to live a whole new life. Life as you once knew it is over. A new life begins. Life full of medical terminology. Frequent Clinic visits and lab work. Friendships made with other children and their parents along with nurses and doctors who become extended family members. Long days spent at Clinic, trips to the ER in the middle of the night along with many admissions into the hospital. It's a nightmare. You see your once vibrant child, looking deathly ill with pale skin and dark circles under their eyes, you see the weight loss and weight gain in your child. And some of us will even experience very near death experiences.

A diagnosis of Childhood cancer wreaks havoc on your entire family. Siblings of a cancer child often times feel forgotten. The focus has to be on your sick child. Forgetting your other children is NOT something we, cancer parents, intend on doing. But it does happen and it happened to our kids. I know our kids knew that Carly needed us..but still, they were left alone more times than I even like to think about. But, we made it through cancer and we were learning how to live a new normal life..because life never is normal again...not as it was before cancer hit.

I often times get so pissed. Pissed because Carly fought and won her battle with cancer. She endured 26months of chemo along with many hospital inpatient stays and 3 extremely close calls with death. All of which, she WON...only to lose her life in a mere 1.5hrs. Makes me sick. That's what she gets for enduring the evilness of cancer?? Pretty messed up if you ask me. And for the record--Carly had NO cancer whatsoever, within her little body at the time of her death. She was CANCER FREE!

I leave you with the face of cancer. The many faces of Carly fighting ALL-(leukemia). CANCER SUCKS! However, do you see that little smiley face in nearly every picture?? Yep, this little girl brought US through this horrible nightmare. She carried US through it. She made US strong while she was so ill. I was asked once, during treatment, "Joany, how do you do it?" My answer, with no hesitation, "because Carly keeps marching forward. She is carrying us through it and that's how I do it." Even in her weakest days, she gave her "mama" all kinds of strength. Love her and miss so much. Much more than most of you could ever even attempt to imagine.