Thankful, day three

Thankful, day three.

Mikey.  His name enough should suffice.  

Mike is my better half, in every single way.  He is the yin to my yang.  He is the calm in my storm.  He is my strong and steady.  He is my rock.

Of course, as you all probably know, Mike and I met online.  Some said that I was crazy, any maybe I was.  But in the end, my gut was right.  He is the most amazing man I have ever met.

Mike puts up with my crap.  And man, do I have plenty of it.  I am honest and demanding.  I am messy, and crude at times.  I like things how I like them, when I like them and where I like them.  And he lets me.  Don't get me wrong, he is the first person to put me in my place.  But all in all, he has spoiled me like no person should ever deserve to be spoiled. 

By no means are we perfect.  We are far from it.  He hates that I leave my towel on the floor.  I hate that he chews his nails.  He can't stand it that I won't cut Wyatt's hair and I hate it when he doesn't hurry for things.  But all in all, we work things out.  We communicate about how we feel.  We make time for date night, every Thursday night.  We know the value of each other.

Don't even get me started on how amazing he is as a dad.  He and Wyatt are so funny together.  Sometimes I swear they are the same age.  He crawls with Wyatt and throws him in the air.  He cuddles with him and kisses him, always telling him that the loves him.  And he does, I can see it.

Ours is the kind of love I am proud my son will see.  The kind of love that dissolves boundaries.  The kind of love that others are jealous of.  I am so thankful for Mike.  I am thankful he is mine, and I am his.  I am so thankful that he chose me.  I don't feel adequate for him at times, but I am every so thankful he thinks I am. 

But most of all, he loves me.  He loves me with a deeper love than I have ever experienced before.  A scary kind of love that stops me in my tracks sometimes.  He loves me fat and thin.  He loves me rich and poor.  He loves me crazy and sane.  He honestly loves me.  In no way will I ever be able to match his love for me.  But, I promise I will spend the last of my days trying to.

I love you Michael Paul.  I am thankful you were online ten years ago and that I was the "Southern" girl you chose. I love you to the moon and back.

Thankful, day two

Thankful, day two.

Today I am thankful to rock my baby boy to sleep.

There were many occasions when we were in the hospital, that I was unable to even hold my baby.  Days upon end, I would sit at his bedside, holding his hand or rubbing his foot, longing to hold him in my arms.  His tiny body, contained tubes and wires, helping him breathe.  There was no place for mama's arms.  He was fragile, and, I admit, I was scared.  Frightened that if I held him, I could disconnect a tube and cause his breathing to stop.  So, for days and weeks on end, I held and rubbed his hands and feet. 

I tell you this not for sympathy.  I tell you so that you can understand why rocking my boy to sleep, even at 2 in the morning, is a blessed occurrance.  So that you can understand why the smallest of things in your world, may hold a much bigger place in someone elses.  I treasure every evening after bathtime, when I can cuddle close, sing Fire and Rain (sometimes dozens of times) and rock my angel boy to sleep.  I praise God that his breathing is on his own.  That I can wrap my arms around him and bring him comfort.  And that the last sound to his day, is my voice and the beat of my heart.

Thankful, day one

While many of my friends have taken to Facebook to express their thankfulness during this month of Thanksgiving, I have chosen to blog.  I find that Facebook limits the emotions I tend to have (and can't contain to a certain number of characters).  So, here we go.

Thankful day one.

Today, I am thankful for my faith.

While by no means do I profess to be a perfect person of faith, but I know my heart.  And I am ever thankful that God loves me despite the fact that I don't deserve it.

Over the past two years, my faith has been tested.  There have been times that I would pray, not knowing if they were heard.  There were times when I questioned the very existence of God.  But, I can honestly say that being on the other side, I could not have made it without my faith.  I know that in those doubting times, that I just needed to be angry.  And during those very same times, I continued to pray.  I prayed for the healing of my son.  Many of those prayers were in the midst of not even knowing what was wrong, but I had faith in healing of it. 

And you see, Wyatt's healing has never been about my time.  Things don't happen in our time.  They happen when they should, in His time.  I see Wyatt's healing every single day.  I see his progress from that place where I questioned everything.  Wyatt continues to amaze me.  His healing is visual for me now.  I can see how my God is laying his hands upon my baby and healing him, every single day.

While I don't know where tomorrow will take me, what I do know is that I am not alone in that journey.  I am not alone in each and every step I take.  He is always there, holding my hand and guiding me, even when I don't deserve it.  And for that, I am eternally thankful.

Reflective

Here I am, nearly two years later, reflecting on all that is.

When Mike and I received the news that were were having a baby, we were elated.  After six months of "trying" and two months of "really trying", our dreams were becoming a reality.  Three months later we received the news that our unborn angel appeared to have his heart on the wrong side of his chest.  

I will say, living with this secret nearly killed me.  I didn't want people to know.  I didn't want people to feel sorry for me.  I didn't want people to take pity on me.  I hate pity.  So, I lived with this pain.  

I prayed every single day, a million times a day, that God would heal my angel.  That whatever it was, that he would just make it better.  Every single day.  

We had showers honoring our baby boy.  People gathered to give gifts and see a pregnant me.  With a false smile, I forged ahead.  Celebrating with a secret is hard.  I smiled for pictures with a broken heart. 

We went diligently to our monthly appointments with our specialist.  We saw how he was growing and got to see his sweet face.  Still, the pain of not knowing was terrible. 

The not knowing.  Not knowing what?  Not knowing if he was going to live.  Not knowing if his heart was going to beat once he was born.  Not knowing if he was going to breathe on his own.  Not knowing what was wrong with our baby.  It's the not knowing that will kill.

Fast forward.  Through nearly two years of hospitalizations and doctors and nurses.  Through rides in ambulances and pleas to God to "make it better."  Through episodes of literally saving my son's life.  Through amazingly supportive friends and family.  Through words spoken on deaf ears.  

I sit here today, the mother of the most amazing little boy on the Earth.  Wyatt is head strong, funny, intelligent and a ball of energy.  He is always on the go and relentless.  He is loving and concerned for others.  He is my angel on Earth. 

You see, during these past two years, I have lived with every emotion imaginable.  I was angry that God would do this to my son.  I was fearful that I would lose him.  I was so happy to be a mother.  I was jealous of mothers of healthy babies, who I didn't feel deserved that honor.  Most of the time, these emotions got the best of me.  Most of the time, I couldn't see the other side.

Two years in, I get it.  I get the big picture.  My prayers never feel on deaf ears.  My prayers were not in vain.  Wyatt is perfect; the truest vision of perfection.  Every day I see the healing.  I see him getting stronger.  I experience the miracle that I have been given.  I live in perfection.

While I didn't want to hear others tell me that God knew what he was doing, those words were planted, like a root in my soul.  I didn't want to hear that in fact God had given me a gift, not a punishment.  Looking back, I know that pain was at the root of all my anger.  I did feel like I was being punished.  Often I would look back at the mistakes I have made in my life, and analyze each and every one, valuing them to see which one caused this heartbreak.  Now I realize, I was looking in the wrong place.  I analyzed the mistakes as if this was a punishment.  Not the successes with Wyatt as my reward.  

I have been given the most amazing gift.  I struggle daily with being a good mother.  Not giving Wyatt limits.  Allowing him to fall and get back up.  I realize that I will struggle for the rest of my life with these things, but I am so thankful I am able to do just that.  Able to have this perfect life in which I have been given.

Just what I needed

The past two days have been tough.  Mike and I have been house hunting.  Because I have gone back to work (even just part time) we are able to purchase a home that we really love and one that we are able to grow with.  I won't bore you with details, but just stay a prayer for us.  It's a crazy emotional journey.  

Also this week, it has come to my attention that Wyatt is at "that stage".  The stage where he wants me all of the time one minute, then wants nothing to do with me, the next.  It has literally broken my heart.  

At any rate, today has been a sad one for me.  I don't know why, just a down day.  I logged into Facebook and checked my "groups".  I am a member in tons of amazing groups from Moebius Moms to Moms of Trach Babies (MOTB).  Both of the aforementioned groups have been great for me.  They are both full of moms who are living with the same "stuff" we are.  It's awesome to have that kind of support.  Anyway, when I checked the MOTB group, a mom had posted the poem below.  Of course when I read it, I couldn't stop crying.  It was exactly what I needed.  It's the story of my life.  I feel as though this poem was written for me. 

I hope you enjoy it as much as I did. 

The Special Mother 

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.  This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? 

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. 

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." 

"Forrest, Marjorie; daughter. Patron saint, Cecelia." 

"Rutledge, Carrie; twins. Patron saint, Matthew." 

Finally He passes a name to an angel and smiles, "Give her a handicapped child."  The angel is curious. "Why this one God? She's so happy." 

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." 

"But has she patience?" asks the angel. 

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." 

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." 

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" 

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!" 

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". 

"And what about her Patron saint?" asks the angel, his pen poised in mid-air. 

God smiles, "A mirror will suffice."

Promises, promises

While I realize I make promise after promise to be a better blogger, I simply am not.  So, no more promises, I promise!

Honestly though, I have started and not finished in excess of a dozen blogs.  All started when I was in a bad place, emotionally.  I never intended for this blog to be a teary eyed, poor pitiful me rant.  This journey has been tough, I won't lie.  But, being on this side of what I pray is the worst of it, I feel terrible that I subjected you all to my sadness.  But I thank you all for your steadfast commitment to supporting me and encouraging me through it all.  I know that I would never have been able to be where I am without each and every one of you. 

Since it has been nearly six months since you last heard from me, I'll try the best I can to summarize what has been going on in our "Crazy Carcione" home.

Wyatt has had one hospital over night stay since we last spoke.  After going to the ER twice, spending the night in the PICCU, going to our ENT's office and a month of calling our ENT repeatedly, Wyatt was scoped at which time they found that our little goat had swallowed a foreign object (the tip from on of his medical supplies that was suppose to be thrown away) lodged in his throat.  They said that had he not had a trach, he would have chocked to death.  Nice.  Thank God it did no harm.  I won't bore you with the details, just suffice it to say that a mother's intuition is never wrong!

Our Peanut is now a crawler and a stander.  Yes, we are mobile!  It's a scary thing, really.  Knowing that you can no longer protect them in a perfect bubble.  Pillows no longer stop topples.  And our boy is on the move!  It's as though he is making up for all of that immobile time.  He is constantly moving.  Even when he lays down to sleep, he keeps moving.  It's crazy.  Our therapists in PT and OT had him fitted for AFO's (braces for his ankle/feet) to help in standing and walking.  While he isn't overly concerned with walking yet, the AFO's are certainly doing their job.  Every day I am amazed at how much stronger he is getting all over, in general.  They really give him the support he needs in order to have the confidence to stand. 

So I know that all parents think their children are smart, my I know mine is a genius (as I had to concentrate on how to spell the word).  He is simply mind blowing.  I mentioned the AFO's above, but they only work when they are on his feet.  Wyatt has mastered the Velcro and can successfully remove them, himself.  He puts them on himself, but can't get them on his whole foot, just yet.  He is obsessed with zippers.  Have I mentioned his fine motor skills?  They are creepy!  He holds the tiniest of things.  I mean, what child at 20 months old can do the things he does?  He knows most of his body parts, by name when asked to point to them.  While he is still non-verbal, he can scream.  Boy can he scream!  He can put large knobbed puzzles together.  He knows the shapes and colors and where they go.  I seriously can go on and on.  It's crazy how smart this child is.  I have no idea where it comes from!

We went to the doctor last week and Wyatt is measuring in the 17th percentile for height and the 50th for weight.  He hasn't gained any weight in the last 6 months, which is good.  The heavier he is, the harder it is for him to be able to move.  The low muscle tone is getting tons better, but he is able to get around better being a bit smaller.  The doctor isn't worried about his height  because he has been consistently growing and a steady rate.  All in all, the doctors are pleased with his growth.

My mom and I attended the 10th Moebius Syndrome Conference in Philadelphia.  It was amazing, of course.  I literally need to devote an entire blog just to what I took away from the conference and all I learned.  I feel so blessed to be a part of such an amazing organization.  Just knowing that things Wyatt does that I had been concerned with are common in the Moebius community.  But the most amazing part was taking away all of the relationships with other Moebius moms.  There is nothing like getting a bunch of mothers together, not only to talk about their children, but sharing information.  It is like nothing I can explain.  Just knowing that you are not alone.  I can't even being to describe it. 

I have gone back to work, part time.  It was a very difficult decision for me to make.  That fine line between being Wyatt's mom and being Amanda.  I live to be Wyatt's mom.  It is in every fiber of my being.  I was made, and born to be his mom.  I know that with everything in me.  However, during the last 20 months of being Wyatt's mom, I lost Amanda.  I lost who I was, not only to the people around me, but to me.  I woke up every morning focused on Wyatt.  Of course, I am his mother.  But, during the struggles we have faced with his needs, I totally lost who was because in the end, I am nothing without Wyatt.  Now, going back to work is not going to fix that, but it has certainly helped.  I feel like an active citizen again.  I now shower every day, and not just because I can smell myself.  I get to talk to people, and not just ones that are in my home for my son.  I feel productive.  I don't feel so dark and sad.  And while it is only 2 to 4 days a week, it's enough to work for now.  Don't get me wrong, I always wanted to be a stay at home mom.  But, circumstances presented themselves differently that I imagined.  I imagined being a SAHM and doing things mothers do.  Basically, being able to care for my child, the way most mothers do.  Taking him to the grocery with me, going to the park.  Simple things you do with your children.  However, in our world, I have been largely unable to do that.  There are nurses in my home 23/7 (don't ask) who are there only to tend to my child, much the way a mother does.  They bathe him, they feed him, they watch his every move.  And while I am there, and tend to do much of this myself, I felt as though they were there to do all of this, and better than I could.  While I know this isn't always correct, imagine someone in your home, all day, all night, taking care of your child, when you don't want them there.  Now, I know that they have been placed there to tend to his medical needs and that I am still his mother.  But, that isn't always the case.  I am not even going to get into the problems I have had and continue to have with nurses, but suffice it to say that it's terrible.  What I am trying to say is that, work has been a good thing for me.  And while I don't know how long it will last (I am only there on a temporary basis), I know that it is the right decision for me, at this moment.

Wyatt is obsessed with Roscoe.  I'm not sure when the change occurred.  He always watched Roscoe, grinning when he would lick his foot, but all in all, could care less that he was there.  However, now that Wyatt is crawling, Roscoe is like a moving target.  Poor guy.  Example:  A few weeks ago Roscoe was lying in the hallway between the bathroom and the nursery.  Apparently Wyatt locked his cites on the poor dog on this particular occasion.  Wyatt began crawling toward  Roscoe.  Sweet Roscoe, not wanting to be bothered during his afternoon nap, simply got up, and moved into the nursery.  Crisis averted.  Or so he thought.  Wyatt then hooked a right and followed him.  Of course, I got up from the floor, where Wyatt and I had been playing, to follow the action.  When I got to the door, Roscoe was literally pinned to the wall as Wyatt made his final decent upon him.  I swooped Wyatt up to take him back into the other room as Roscoe blinked in relief.  But seriously, Wyatt's love for Roscoe is undying.  He loves to pat him on the head and give him hugs.  I am so thankful that Roscoe is so patient with him.

Well, I think I will put an end to this update.  I know there there are six months of things that I have missed, and for that I am sorry.  I am going to try and make an effort to be better, but I promised not to make promises, so I promise I won't!

Love and happiness!

Amazing Friends

While I have tons of amazing and supportive friends, this blog is dedicated to one in particular.  Andrea Jarvis Hurley.  Her photography and artwork are truly amazing and ah-inspiring.  But, she has taken the most incredible photo of (my favorite, unbeknownst to her) purple tulips.  Ms. Andrea has decided to donate all profits from the purchase of the picture to the Moebius Syndrome Foundation.  She even asked me for my favorite quote to add to it!    

http://www.etsy.com/listing/93252726/purple-tulip-religious-verse

I beg each of you to check out this beautiful picture in honor of my Wyatt.  

Also check out her blog. http://andreahurley.blogspot.com/  She is crazy talented!  And don't forget to check out her other stuff on Etsy.  This girl is going to be super famous someday soon!

Andrea, we love you and thank you so very much!!

Fix me

I recently saw Joyful Noise with Dolly Parton and Queen Latifah. 

Let me begin by saying that I had heard mixed reviews on this movie so I went into it with an open mind, and heart.  I got there about 5 minutes after the previews had started, expecting to be the only person in the theater.  Instead, I was the youngest!  lol  

While I found much of the acting hysterical (and not necessarily in the good way), I learned two things about sweet Dolly.  First, she isn't the actress I once found incredible in Steel Magnolias.  And second, she dances with the rhythm of a white woman!  I say this because I too, have the rhythm of a white lady.  It was pretty funny to watch.  

Back to the blog at hand, I found so much of the movie spoke to me.  I'm sure that many people will watch this movie and take different things from it.  The things I took from this movie, could fill a stadium!  Honestly, though, I took quite a bit from this movie.  

First, there is a scene with Queen Latifah's character and her son, who has Aspergers.  They are having a conversation about God.  Her son asks her why she loves God.  He then goes on to say that she should hate God for making her son the way he was.  This scene was the most profound for me.  You see, I have felt this way so often.  I don't hate God, but I don't understand how this could have happened to my son.  Wyatt doesn't have Aspergers, but he is different from others.  He will struggle for the rest of his days.  He will become teased and broken by words because he is different.  This thought alone crushes me inside.  People have told me I need to teach him to be strong to it, but I hurt for him.  I know I have talked about this before, but unless you have a child with a "disability" or a visible difference, you have no idea what this feels like.  Not to mention the struggles he has already faced medically in his short 14 months of life.  It just doesn't seem right in my eyes.  Why my baby?  

Anyway, the next scene that made me cry like a baby was actually a song Dolly sings with her grandson.  It's called From Here to the Moon and Back.  It is a very sweet song.  However, this was shortly after the scene mentioned above.  And you see, every night when I tuck Wyatt in to sleep, I tell him I love him to "the moon and back a million, billion, trillion times".  

And lastly, there was a song in the movie that spoke to my very core.  It's called Fix me Jesus.  Below is the youtube link.  It's simple and sweet and incredible.  It's my mantra.  Fix Me Jesus.

I recommend that you at least take a chance on this movie.  It's not the best I have ever seen, but it spoke to my heart.  Maybe it will yours too.