Thursday, January 31, 2013

Diary of a Grieving Mother

Most days I am happy. Truly happy. I see my son and feel this overwhelming sense of purpose in life. This surreal feeling of knowing that you are the one constant in someone's life. Its hard to explain what it feels like to be that person... who comforts them when they are crying, the person who makes them giggle uncontrollably, the person who when you walk into the room from being gone at work all day who makes them smile ear to ear.
I am a mom.
I am a mom of a little boy who by all definitions is a MIRACLE.
What a blessing. What a honor.

Then there are those other days. Those days where I feel broken, and feel this overwhelming feeling of loneliness. Surrounded by people, and yet still so lonely. Someone missing.
I am an angel's mom.
I am a grieving mom. I never wanted that title.
I never wanted to know what true pain felt like. On these days I can't explain to people why I look exhausted, I can't explain to people why am I not my normal self, to look at them am just say..."I miss my son! I just want my child back. Today my heart is breaking."  I do not want pity. I do not want that "look". Anyone who has experienced loss, knows that "look". A very selfless look, that comes from a wonderful compassionate place, yet it can make you feel so naked. So exposed.

What is hardest about my grief is that sometimes the one person who is such a blessing to me reminds me of the one person who is missing in my life. I look at Blake and see this wondrous child. This child who has overcome obstacles that would have stopped even the strongest of men. This child who defies all odds to be alive today. But ever so often I see this child that was once a two part deal. How do you have only "one" twin? It doesn't even make twin. How am I suppose to answer simple questions.
Is he your first? Is he an only child?
Then there are those days when I look into his eyes...

I look at his amazingly blue eyes and wonder.....
Would Conor's eyes have been blue...or would they have had my shade of green?

I look at his heart melting smile and wonder....
Would Conor's smile have been as big when I walked through the door?

I look at his face, with the shape and likeness of his father and wonder......
Would Conor have looked as much like Zach or would he have looked like me?

So many questions...left unanswered. Hopes and wishes that I once had for my two twin boys, gone. Altered to fit our now "normal" life. Multiple sides of me. The daily struggles of learning to be a new mom, as well as the daily struggles of being a mom to a child with therapies every week, doctors appointments, trips to Riley's, labs here, shots there...going stir crazy from being on lockdown. Unable to go to the grocery store on a whim or to lunch with a friend. The daily struggles of finding the time to take off your "mom" hat and be a wife, and friend. I have frazzled hair dos, baby food on my shirt, and sometimes I have tears in my eyes for no other reason than that I miss my son. Finding strength on these "other" days is hard. Finding faith, and hope, and comfort is almost painful. When your heart is breaking the last thing you want to do is stand up, wipe away the tears and praise God and thank him. Christianity is not easy. To believe in something you can't see its difficult. But when you have faith- you understand. You find strength you never thought you would have. You stand up when you thought you would never again. You wipe away tears, and you feel comfort. God does not place a path in front of you without a reason. You must keep the faith. You are allowed to cry, and have those other days as long as you eventually stand up and believe that there is a plan. So today I miss Conor. And I do wonder. I wonder who he would look more like, I wish for everyday that I could see his beautiful eyes, his heart melting smile, how I wish I could hold him and kiss his cheek. But I know its not forever, I will see him again. And today I also look at my sweet baby Blake..who isn't such a baby anymore. He is growing like a weed, and is such a blessing. What a blessing! What a miracle!
I am a mom.
I am also a grieving mother...

Psalm 73:26My flesh and my heart may fail, But God is the strength of my heart and my portion forever

Saturday, January 26, 2013

Bubble Blowing

Might be the cutest video we have taken. Blake randomly and quite consistently learned to blow bubbles...and for that whole day he decided to do it....non-stop! Zach and I have never been so tickled!

YouTube Video

Thursday, January 24, 2013

Adjusting to the Band!

We have had a busy few weeks here in the Hargis household. Before I go on about Blake, I want to thank all of our Facebook and Blog followers for all the wonderful and kind comments you left me and my family about my grandmother. It has been an emotional and taxing journey and to know she is now cancer and pain free is a wonderful feeling!
Now onto Blake's newest addition to life...his cranial band! This was one I was having a really hard time with. I'm not sure if I can truly pin point why, if it was the actual look of the band or "helmet" as Zach and I call it. If it was the amount of time he has to wear it. Or if it was strictly because I love every inch of my son and covering his head makes it IMPOSSIBLE to kiss all over it! To be honest I think it was a combination of all of these...but like everything else it was something we have to do. So we do it, whether we like it or not, for Blake!
So last week on Thursday we took Mr. Blake to get his newest hat!

Love those Rosie cheeks!

He still had no idea what was happening!

Last picture before the placement of his helmet!

Before the customized cut.

It was a little BIG! But then after some cutting and grinding to make the perfect fit....My cutie pie....

Looked even cuter with his new hat! And thank god it didn't even phase him! I think my biggest worry was that we would put the helmet on and he would throw a fit, and those tears I was just not prepared for! But who knew I wouldn't have to wipe away those tears?! He was perfectly content! And another big plus was that he was on a weaning schedule. So no 23 out of 24 hours until a week later! This I think was more for us then for Blake but hey we are taking it!!

Our first day went really well he wore it only three times for an hour. No red spots, no rashes, or problems to report!

Second day- 3 times that day for 2 hours each time! And again...perfect! And so followed suit on the 3 and 4th day! He even slept in it and tolerated it great!

It was only on the fifth day after a car ride to a doctors appointment we hit our first glitch! After our visit with Blake's surgeon from Riley-which by the way went great! We have graduated and no longer have to see him! Even though we LOVED him- Yay for one less doctor!! but anyway back to my story! So after the appointment I noticed Blake had a very large, very red spot on his forehead! So as instructed we left off his helmet for an hour-then two hours- and it was still there so we left it off for the day and met with the cranial tech the next morning!

The spot didn't seem to go away even after a whole nights rest- it's not really that red...we marked with lipstick so we could see where it was rubbing on the helmet. And after 30 minutes of cutting and grinding again....

Wàla! The helmet fits once again!!
I actually have become quite fond of how cute my lil' man looks in his special hat...although its an adjustment we will get through it! After all its only a few months or so and then we have a round head again!

So on another note- Blake is up to 14lbs 8oz. He is eating what seems like ALL the time! He is grabbing toys more and more and is doing really well in therapy meeting almost all milestones for his adjusted age and meeting some at his actual age! We are blessed and loving everyday we have with out little miracle baby!

Stay tuned: Up next a video of Blake's new bubble blowing habit! Too cute!

Monday, January 21, 2013

Another Angel

Yesterday was a hard day for my family as we said our final goodbye to one of the sweetest, loving, stubborn (yes it's where I get it from!), SUPER strong and most giving woman I've ever met. My grandmother, Bonnie Kirkwood, graciously and peacefully went with Jesus on Sunday afternoon. She left behind her husband of 52 years.

Two loving daughters.

5 grandchildren, 3 step-grandchildren, plus all the grandkids she gained through marriage!!

And 3 great grandkids!

She loved her family, and always made sure her life was surrounded by the ones she loved! After finding out she had cancer back in 2006, she fought hard and showed my family what true strength was. She looked the evil monster dead in the eye and said it would not bring her down....and it didn't! She fought hard and won! After two more relapses that evil monster finally took my grandmother but on her own rules...her own terms! it wasn't until she was ready, until she had time with her family, and then peacefully she went! And now she walks those beautiful streets of gold, pain free, cancer free and cuddling with my dear angel baby Conor.

He Only Takes the Best
God saw you getting tired,
And a cure was not to be.
So he put his arms around you,
And whispered “Come to me”.
With tearful eyes we watched you,
And saw you pass away.
Although we loved you dearly,
We could not make you stay.
A golden heart stopped beating,
Hard working hands to rest.
God broke our hearts
to prove to us,
He only takes the best.
By Therese Pearman

I love you grandma!
Thanks for showing me how to be a strong loving and generally GREAT woman!

Wednesday, January 16, 2013

Heads Up!

Tonight is our last night for the next few months of getting to constantly kiss on Mr. Blakers head and run our fingers through his little comb over hair style whenever we want! Tomorrow is the big day.... we say hello to Blake's cranial band to correct his plagiocephaly . I can only hope for two things with the cranial that the helmet doesn't bother blake too much, causing him to be upset all the time and uncomfortable....and secondly i hope for a fast fix! We are looking at at least 8 weeks of wearing the band for 23 out of 24 hours out of the day and could last weeks even months longer if necessary.
I just try and remember it will be completely and utterly worth it no matter how long he has to wear it, and Better to do now while he is so young!! So for now... It's goodbye pretty little head and hello cute little helmet! Pictures to come soon of his new style!

Sunday, January 13, 2013

This dang cold season!

Sooo... Where to begin?! It should probably start with Christmas and the low grade fevers, followed by runny noses and a LOUD.....DRY....all the time...wake you up cough! And that was just Blake! Fortunately, Zach some how escaped this dreaded cold (we needed someone to take care of us!) as I was dropped smack dab in the middle of it, and continued to have it until mine ended up to be bronchitis!
Thank God Blake's did not....but that does not mean it was any less scary!

We took Blake in a few weeks ago for his Synagis (RSV) shot, and of course his cough and congested nose was worse than normal...this triggered one of the longest days we have had this far since being home! It started out with Blake's nurse telling me "how bad RSV has been this year... How she hopes Blake doesn't have it...or pneumonia... How she hopes he won't have to be admitted to the hospital...." All things I didn't want to think about! So Blake's pediatrician came in to listen to him only to reintegrate all the things his nurse had just said.... Thus turning me into a sick...
worried...mess!! And poor Zach was helpless at work waiting for updates from me, while I kept forgetting to text only making him MORE worried! So the first test was to check Blake's oxygen saturation. Something I do everyday at work, something that shouldn't be hard... It's simply a plastic clip that goes on your finger and gives a reading! Nope.... Not today. They clip it on Blake and it read 76-79-82-68..... (These are NOT good numbers!) so I begin to flip out... But alas it's just the darn machine failing to pick up properly! (Thank GOD!) So while we wait for a new was time for the Nose swabs for Blake. Which he hated. But we tested for flu and RSV both of which take 15 minutes to result. So Blake and I waited. And waited. And waited for what felt like an eternity...both of us coughing and generally just wanting to be home in bed cuddling! But finally those results came back....NEGATIVE! Again thank god! So the doctor informed us she was worried with the way Blake's lungs sounded he might have pneumonia, so she wanted a chest X-ray just to verify and she would be sending him home on long as Blake's oxygen saturation was normal once we were able to obtain it, and she also went ahead and gave the okay for Blake to get his RSV shot as planned. So the nurse went to get the shot- and we would check his oxygen level as soon as the other machine got there. Okay- day was getting a little better...OPPS spoke too soon... As soon as the nurse got back in the room Blake broke out in a red splotchy rash across his chest and on his upper right arm! great! So... Enters the pediatrician again... Okay the rash is nothing to be concerned about probably stress related! on the the oxygen saturation... Now how many people do you think it takes to get an accurate reading on Mr. Blake? Mom + Blake's Nurse + Pedatrician + another Nurse.... Ahhhhhhhhhhh 4- Four people (four health care professionals at that!) to get an accurate reading! After 10 minutes of messing with that dumb machine we were finally able to get a reading of 99%! So we got the okay to go home rather than get admitted to the hospital! (And yet I have still failed to be a good wife and update my poor husband who has texted me multiple times for updates!) it was from there after his shot (which he hated as usual!) that Blake and I went to get his chest X-ray. That in itself was a traumatic experience for Blake and myself as I was not allowed at his side while he was placed in some weird see through plastic contraption for the actual X-ray. Finally after all was said and done we headed to car and to daddy's work so I could apologize for not updating and Blake could get some lovin and cuddles from his daddy! And honestly so I could get some hugs and "it's gonna be alrights from Zach too!" We waited for about 30 minutes at his office when finally we got a call with the results of Blake's X-ray...
Pneumonia....or.... Just a cold?
Just a cold!!! His chest X-ray looked clear and was completely normal! Thank The Lord.... With Blake's past lung issues- to get pneumonia could have been very scary and possibly could have lead to him needed oxygen support or even to be placed back on a ventilator! But Luckly only antibiotics were in our future! And we can handle that! So after days of much needed sleep....

And more sleep.....

And more sleep....

Here we are feeling SOOOO much better!

So fast forward to today- 10 days later Blake is feeling much better- I am still coughing up a lung but have finished my antibiotics as well and feel much better also! This week is the last week we will have Blakers without his cranial helmet. Since the new year Blake has gone to the cranial techs here in Evansville and gotten fitted for his helmet. Unfortunately what we were told would probably be a few month ordeal has now been changed to 3-6 months but we roll with the punches in this house! To add to that also our insurance has claimed this to be a "cosmetic" procedure and has denied any claims made to it.... What does that mean? Well it means we pay for the helmet- no coverage for us! But what needs to be done will be done... And honestly with all the bills we look forward to paying why not add one more?! So Thursday it is! Thursday our cute little man gets to fix his crooked little head! Wish us luck! And pray that he doesn't flip the heck out the whole time it's on! Because its on for 23 out of 24 hours of the day... And we slightly feel like Blake's been through enough! We hope he gets used to it quickly and that his head corrects itself quicker than they expect too!

Blake getting his scan- see the camera on the top of his head?!

Now for more pictures.... So as you know Blake loves mirrors! Here is a pic showing JuST how much....

And him checking himself out on my phone!

This was Blake when he was sick... And yet there he was still smiling and being a ham!

Blake visiting Ms. Alyssa!

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