Just a quickie

Rewind:

1st- need to start blogging again.
Why?
A) I get to live life twice
B) it's therapeutic
C) some really amazing things are happening in my life right now

Now back to the rewind button:

Since I last wrote I was diagnosed with sjogrens syndrome. I have started chemotherapy in an effort to tame my stinking immune system. Yuck.

Leila had massive reconstructive surgery to her face which is turning out beautifully (thank you Dr. Leighton, or dr dude, as Leila refers to him as. Yes I will post pictures, at some point.

Just stopped by to say hello and write a quick update. I need a keyboard for this darn I pad before I can type more---never have hit the backspace button so much in my entire life!!! But I do love you oh I pad, I do!!!

Rie

Random Ramblings

So you found me eh??? Being back here feels a bit like coming home.....I feel comfortable here.

I don't have much to say, really. I feel like poop most days as my joints ache, burn, swell and become stiff. Putting two feet on the ground in the morning simply takes too much effort and energy at times.

Docs think it's RA (rheumatoid arthritis) and now their out to prove it. I just want medicine to make it better already. Feeling crummy can be down right depressing---especially when the children's laughter echos down the hall and into my bedroom and I am reminded of what my body is keeping me from enjoying.

I am counting the days until I can see my mama and daddy, feel their warm hugs and enjoy that beautiful Michigan breeze. We are ALL going........my hubby and Sultan this time! The kiddo's are beyond thrilled and I'm counting the days til I can wrap my arms around this turkey:

Just look at those baby blues---and to think I haven't held her since she was newly born (insert sad face here). I miss out on so much being here in Arizona, away from my Michiganders. My mom, dad, sis, bro, aunts and friends all do their best to call me often, fill me with updates, throw Peyton on the phone so that I may sing with her---all in an effort to help me feel closer to home. I crave the support of having my mother live close to me, especially these days. I need her more than ever. Countless days I would have called and asked her to come sit with me, talk to me, love on my babies. I would have begged her to get me out of the house and have lunch together, something, just to help me feel human again. Then again, I know I wouldn't have to beg as she is always one step ahead knowing just what I need.

It gets so lonely here in AZ while fighting an illness when all you want is your mom, who just happens to be over 2000 miles away. Melissa, Rebecca.......you two rock! Your support is unyielding and your friendship only grew stronger during difficult times and will never be forgotten.

I don't always have pleasant thoughts to write about, therefore I haven't written. But with the support of my friends and particularly my Aunt Daleann, I will write----even when I feel I have nothing to say that anyone would want to read.

XOXO

Rie

Pain and Gain

Another surgical procedure, another tough week. This old back of mine just won't cooperate. And I need it to cooperate more than ever! I've just been accepted into nursing school for the fall to complete my RN!!!

Not only that, but some super exciting things are happening here at Rie's Dialogues.
Some super big changes, and some SUPER BIG GIVE-AWAYS that I promise YOU WON'T WANT TO MISS!!!

It's going to be so amazing.

Stay tuned.......

A Piece of Home.....

Actually a BIG piece of home is here with me now and I am gobbling up every bit of it. If I couldn't go to that dock, by gosh the man responsible for building that dock came to me. After reading my post about that "little old dock", my dad said when mowing the lawn yesterday he looked at the dock and began to cry (sorry dad for exposing your sensitive side). I don't think he knew how special that small piece of earth is to me. How I appreciate the effort and work it took to build it. I love it all, everything my mom and he created, because all the little things have made me the woman I am today. I hope they realize that.



I spent the afternoon preparing my homemade chicken pot pie because there is nothing better than coming off a long flight to a home cooked meal. After one bite my dad said "this reminds me of my grandma's". WOW, I was speechless. There is no greater compliment I could have received.
(An apron I made for my sister-n-law)

Simply put, they are EXACTLY what I needed right now.

I'm going to be taking a small blogger break to celebrate my beautiful girl (more to come on that soon), and to prepare for the difficult days that are to follow (more on that to come as well).



Rie

New Day

One of God's greatest gifts is that we awake to a new day where the problems of yesterday are just that, the problems of yesterday.

A new diagnosis will not change who I am at my core; wife, mother, sister, daughter, friend, and above all, faithful.

A new diagnosis may change my direction but it will not change my soul nor the people that ride along on this journey with me.

So while I wait for the results, I will not let worry consume the here and now.

I am A-OK.

That Little Old Dock

I have been a terrible blogger this week. Truth is I wanted to tell you, my extended family, what has been weighing on my heart but for some reason I had a very difficult time writing it.

Turns out that what doctors thought was post-partum cardiomyopathy (heart failure brought on by pregnancy) may not be what I have/had at all. The Mr and I had our suspicions since day one that my immune system was to blame and we told everyone so. However, there was neither a person that took us seriously or the research to guide them so my diagnosis stood.

It turns out that I may very well have an immune system disorder in which your antibodies will attack your heart/lungs if a foreign body (fetus) is presented. This would also explain why my heart failure returned because with PPCM heart failure NEVER returns unless you were to get pregnant again.

I was told to have another child would be fatal therefore doctors recommended a hysterectomy. Now, if this new diagnosis is correct, I could have had more children biologically.

A firm believer in everything that's meant to be will happen, I know if anything had been different, we wouldn't have our little Kyrgyz princess and I simply can not imagine a life without her in it.

With that being said though, the choice was taken away from me. If I wanted today to have another biological child, well, I can't.

It sucks.

The one place that could ease this pain is home. Home in Michigan, 2000 miles away, where in the backyard lies a humble little dock extending over a pond. I want nothing more than to dangle my feet over it's edge and watch the movement of the water distort images of trees and birds.

All of my problems growing up were pondered on that dock. Oh those problems seemed so big at the time; boys, mean girls, bad grades. I needed nothing more than a little time on that dock and I would have a certain inner peace about life. It is a magical little place.



My life reflects the life of that little dock. I've faced the harsh elements and they've left their scars and splinters. The elements may rock and weaken it's boards but because it was built with care and purpose, it will withstand the test of time.

This was the dock that built me.

Super Husband. Super Dad.

Today I rolled over in bed and painfully placed my feet on the floor. I needed to get Leila to school and return home to rest.

The house was still, not a noise to be heard.

Leila was at school and so was J. My husband, that wonderful man, that wonderful man.

The hustle and bustle of life can tune out all of the wonderful things that people do for us daily. My Mr. had a busy day of work ahead yet he managed to get both kiddo's out of the house and to school so I could rest my achy back and legs for a little while longer.

Sunday morning he came in from the garage bearing all sorts of meats from the fridge. Soon the house was filled with all sorts of delicious smells; garlic, onions and bbq out on the grill. "You won't feel like making dinner the next few days so I'm making them for you" he says.

Date nights consisting of movies and fancy dinners all have their place in a happy marriage but what is most romantic to me is my Mr's ability to foresee my needs in the near future and meet them.

My mother-n-law has been so helpful as well and I can't thank her enough. Kids were bathed and nestled snug in their beds the night of my procedure. She picked them up from school yesterday and I was told not to make dinner tonight, Jidu will be bringing something delicious over.

It takes a small army to keep a family functioning when a mom or dad is not up to par. I couldn't be more grateful for the friends and family that surround us and jump into our places so flawlessly that the children don't even bat an eye at the changes.

I am one lucky woman.

Dream Land

Today I had double steroid injections into my lower back in the hopes of warding off another surgery for many years.

The only word that's coming to mind right now is OUCH!!!

So........I'm under the weather today and will write my next post in a few days.

My favorite thing EV-AR is napping with my furry sons. Their warm bodies and soft fur are a delicious recipe for a long afternoon snooze.

Kisses,

Rie

Where is He?

If you're thinking about tomorrow, you're not living today.

Today is so wonderfully beautiful for it's very own reason, though we may not always see it.

I have every reason to think about tomorrow. I almost died after my son was born. There was more than a possibility he would be raised by his father and without a mother. I went into a deep depression. I can still hear the echo's of well-intentioned people saying "stay positive", "there have been studies showing that negative things happen to negative people", "where is your faith?" and the ever-SO-not-helpful "everything will be just fine". I did not raise my son for six months, therefore we did not bond until much later. I did not even feel like a mother. I had no energy to fix a bottle, change a diaper or feed my handsome boy.

The years ahead were filled with challenges; hysterectomy, cancer scare (twice), meningitis, gall bladder removal and eventually the return of my heart failure. And throughout I would continually ask "why me?"

When my daughter was burned and then left to die on someones front door step in the middle of an incredibly harsh winter, I wondered, where is God in all of this?

Science is science. Our anatomy is fragile, things go terribly wrong. Physics are physics. When tragedy strikes it's Christian nature to ask "where is God in all of this"?

Where was God when I was fighting for my life and not able to be the mother he had blessed me to be? Where was God when my daughter was left to die? Where is God when an innocent child's life is taken? Where is God when children are orphaned and fighting for their lives just waiting for a family to adopt them?

I now know for myself exactly where He is.

He is in the doctors and nurses. He is in the selfless orphanage staff that does their very best to bring life back into these children. He is in the people that show up when we can't show up for ourselves. He is, simply put, the love that surrounds us when our world is falling apart, holding it all together. God doesn't cause these terrible things to happen. Bad things happen to good people and bad people, tragedy does not discriminate.

I've had to work very hard not to worry about the future. Everyday a thought will creep into my head wondering what's around the corner. When you've been through the worst, you realize the worst does happen. "Rare" is no longer rare. You take no comfort in any ones advice or medical statistics. And this is completely normal, completely realistic and completely OK. I no longer feel badly about expecting the worse.

But what I do know, is that no matter what lies ahead for me, God will show up. I think about today only and cherish what I have in the here and now. "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future". Jeremiah 29:11. I place my worries in His hands and focus on living the life He has planned for me.

To Continue

Arizona sunset during our last camping trip


Two nights ago was not a good night. I experienced some type of cardiac event which included palpitations, my heart felt like it was coming out of my chest, extreme jaw pain with numbness, nausea, dizziness and difficulty breathing. Lying on the bed was torture as my Mr. was closing up the house for the night and I couldn't call for him. Literally, I felt as though I was going to die right there and he wouldn't even know I was experiencing this as I was completely fine one minute before.



Eventually he found me and comforted me as he does so well. 15 minutes or so had passed and I began to feel normal again. I was so scared, a million and one thoughts went through my head; I need to write letters to my children, what would my children do without their mother, does my husband know everything he needs to know, etc..... Just when I think I'm healthy and life is great, something happens to remind me just how lucky I am to be here today let alone tomorrow. Preparing for the worst is not pessimistic, it's realistic. I am at peace with Heaven and The Lord, I am not at peace with leaving behind those that I love.



I say to my Mr. "I just want it to stop."



He replied "we have gotten through the worst of the worst and have come out stronger for it. I will always be here for you and whatever life throws at us we will tackle together. You want it to stop, I just want it to continue".



Here's to continuing life, together, no matter what.

Shop Talk

The injection kicked my booty. Migraine caused me to loose my G2 in the truck to pick up J from the bus.
J gets in and proceeds to make me feel better by saying "My gosh! What stinks in here!" Uhh, that would be my puke bag.

Had another injection yesterday and this time I asked for the knock-me-out-make -me-happy medication. Not a decision I regret for one minute.

Oh! And on top of icing and medicating, I'm studying for a mid-term tomorrow!

I am alive, I am mostly healthy, I have a wonderful family and group of friends. I am thankful to be a nurse so I can impact patients and their experiences in a positive way, unlike the experience I had myself during injection one. I felt lower than a lab rat that morning.

For you Michiganders! Blue Lily has opened her session dates for September! She will shoot in downtown Clarkston and Yates, two incredible locations! I myself would go for Yates but seriously, you can't go wrong with Wendy. Once her sessions open, they fill (speaking from experience) so don't dilly dally!

SIGN UP HERE

If I don't end up in nursing school this fall, you bet your white butts (I know your butts are all whiter than the snow up there right now!) I will travel up just for this shoot!

And last but certainly not least in my shop talk:
Happy Birthday Beanie, you ol' fart you! I'm looking forward to our weekend date together. You are soooo gonna love our gift to you! I would be lying if I said I weren't jealous!

Smooches,
Rie

Dear Pain,

I've got things to do.

Dreams to live.

People to entertain and take care of.

I simply have no time for you.

Please let this injection today make you go away, no offense.

Let's make one thing clear: I am not having another surgery (period)

My life has finally gotten exciting.

Go away- Bah humbug!

Under the Weather

This weekend I sent my parents home on a jet plane.

I am not feeling so hot, flu I suppose. Swine? Seasonal? Cold? Who knows?!

I have lots to tell you and no energy to type.

Hopefully I'll be back to normal soon........

Date Night Michigan Style

I'm off on a date.
Yup folks, I'm the third wheel tonight.
I don't mind.
Quality time with my bro and his wife.....ahhh, my soul has been at such peace since my arrival.
From this trip alone, my heart has healed.....I betcha.
Just wait until that next scan, all is well.

There are greater things yet to be done in this city.

Energy. Where have you gone? Are you being held for ransom by those medications in exchange for a functional heart? I can't find you and I really need you back. I need you for all the great adventures I've signed myself up for. Because you left, I had to delay my return to the work force and I was really looking forward to that new phase of my life.

In an effort to maintain my emotional well being I have searched for alternative options. I signed up for cake decorating classes and offered myself as a volunteer at our church. I mentioned to Tariq that I would like to sew. "Go for it and get yourself a machine......Happy Birthday." What a wonderful husband I have. Not only did he support this new venture, he accompanied me to a store. Not only did he accompany me, he was present as we spoke to the ladies about the machines. He asked insightful questions and gave me his full blessing in making my decision.

Even though the reality of my situation shows its ugly face once in a while, I've managed to work through the pain and move forward. But I cannot be an active participant if you do not come back to me in some way shape or form.

There are greater things yet to be done in this city, this city that I have not been so partial too. There has been good here, but I want it to be better. Not saying this is going to happen, but I could not leave this city without giving it full effort. I want to enjoy it and experience it.

Please come back to me energy and allow me these greater experiences.

Extractions, Toothfairy, Bunk bed and PTSD...What a Week!

Jalyn's adult teeth were trying to come in, yet his baby teeth are not budging. His big man teeth are coming in crooked due to the overcrowded issue going on in his mouth. The dentist gave Jalyn the option of doing the extraction right then or another day. To my surprise, he requested it to be done now and without me in the room! This was the first time he went back alone even for a cleaning! He took it like a champ. The dentist, who lives in our neighborhood and has seen Jalyn since one year of age, came out and said to me "your little man's growing up!" I cried.

We found a retired master carpenter on Craig's List that makes bunk beds to order. He had one already on hand and gave us a great deal. It was made out of fresh wood so I've been painting it the past few days in 115 degree heat.....not fun. The J man is so excited to have a whole new room. I will post pictures of the make over when it's complete.

Jalyn will have his sixth birthday party this weekend! He choose to have his closest friends over for pizza, popcorn, movie and slumber party! I'm trying my hand at a Mario cake......wish me luck!

I signed up for cake decorating classes today that start in August. I will be doing them with my dear friend Laura. We are both so excited to learn something new! Having some girl time is going to be so much fun and very much needed. Thank you to my awesome hubby who offered to watch our kids and Laura's daughter so we can do this together (her hubby works nights).

And Leila. It's been rough. Today I was told that she is struggling with PTSD (post traumatic stress disorder). Without going into detail, she has been exhibiting concerning behaviors that we have noticed. I met with her pediatrician today. He has extensive experience treating children who have been burned and have PTSD. We will continue to provide a loving and supportive environment. At some point we will start counseling with her. It has been and will be a long road, but if being loved unconditionally has any impact, we are certainly off to a good start. Her pediatrician was amazingly supportive today. He said "since the first time you showed me her picture I've loved her. Then you brought her in to meet me and I loved her even more. She is loved by a lot of people and that has the most impact on recovery." He reassured me that he will be there for us every step of the way and that his heart is truly with us on this journey. He said that what we have done and are doing is very admirable. That meant so much to me. Just knowing that your supported by family, friends and even your doctor makes the road ahead look a little less bumpy.

Now Your My Whole Life

This morning I had music playing in my room as I was working on packing the entire family for Disneyland.
Leila came walking into the room during the last minute of a song and danced. She loves to dance.
As that song was fading, she walked over to me with her arms up in the air.
I knew what she was wanting.
She wanted a dance with Mama.
We waited for the new song to start.

Now, on my MP3 player I have lots of different music. Black Eyed Pea's, Poker Face, Flo Rider and numerous country songs. Whichever song came on we would dance, mother and daughter, fast or slow.

This is the song that came on.

I cried.

I couldn't help but think there was a higher power involved in this one.

I remember trying not to stare the first night I met you
You had me mesmerized
And three weeks later in the pale moon light taking 45 minutes just to say goodnight
I told you over and over again, I thought I loved you then

Now your my whole life
Now your my whole world
And I just can't believe the way I feel about you girl
Like a river meets a stream
Stronger than it's ever been
We've come so far since that day
And I thought I loved you then

I can just see you with a baby on the way
I can just see you when your hair is turning gray
What I can't see is how I'm ever gonna love you more
But I've said that before

Now your my whole life
Now your my whole world
And I just can't believe the way I feel about you girl
Like a river meets a stream
Stronger than it's ever been
We've come so far since that day
And I thought I loved you then

My precious baby girl, I love you so much.

Our bond has grown so much since the first day we met.

This picture was taken the day of her MRI, daddy took us out to dinner.

You ate and ate, we didn't know where you were putting it!

We found out yesterday that her MRI came back completely normal.

Unfortunately, Friday was considered a holiday so the doc didn't have her records with him. He asked that we call back Monday to review what this means and discuss where we go from here. Does this mean there could be other causes? Could she just have had a negative MRI but still have CP? We are left with more questions than answers now.

Brother and sister watching a movie together.

Leila holding my Ken Barbie doll from when I was little.

Both chowing on licorice.

What a bond these two share.

Warning: Construction Zone

There are some big changes going on in the Al-Mutawa household.

I had a visit with my new cardiologist, whom I love. My Mr. consulted with him when my grandma was so sick. First thing doc asked was "how's your grandma doing?" How amazing was that?

During my visit the doc explained to me how lucky I was to have recovered from PPCM. "Only 1/3 of my patients recover, in fact I have one patient that went against my advice and decided to attempt a second pregnancy. She is now in the ICU awaiting a heart transplant with two babies at home." Wow. I recovered. I'm blessed. I wanted a second child, I tried talking the Mr. into trying again even though I knew that meant possible death. I was desperate. I didn't feel my family was complete. I prayed for God to show me the road we were meant to travel and I would take His hand and place total faith in Him. Well we all know where that road lead, to the most beautiful little girl in the world.

The words I heard from doc was nothing I haven't heard before, but it hit me rather hard. It brought it all back for some reason. Just when you think you've grieved and moved on you realize your not quite over it.

Doc recommends a nuclear stress test to take a look at my ticker. He requested I come in today but we all know that was not possible. Sissy had her MRI. The test will have to wait until after Disney.

Meanwhile, I received a call today from another doc notifying me that I have Hypothyroidism. If untreated, your risk of heart attack doubles. Yikes.

Time for some major changes.

I read the obituaries daily. I watch the news/read the paper daily. While they are inspiring, I read blogs that center around tragedy.

Starting this morning, I decided to stop reading, stop seeking and to stop focusing on negatives. I have my own personal tragedy that I'm still trying to overcome, and that's enough on my plate for now.

I'm going back to work very part time. I'm at my happiest when I'm helping others through their time of need. I've missed my job tremendously and I'm excited to have some adult conversations again.

Starting August I will begin to take cake decorating courses to full fill a dream I've had for sometime. One of my all time goals would be to own my own cake decorating business out of my home.

The gym is back to being my new best friend.

In the past I've felt guilty over taking time to work out, leaving the kids in the gym daycare. Now I realize that getting healthy is not a luxury but a necessity.

Just having these new goals and a husband that supports them has made me feel like a whole new person.

What goals can you make for yourself today towards a happier, healthier you? Think about it and then join me!

Punkin Poo's Update

We are back home now and Leila did great!

They let me go back with her while they gave her the anesthesia via mask. When we walked in, the anesthesiologist held out her arms for Leila and she went right to her! She held Leila so gently in her lap, let her play with some toys attached to her name badge, held the mask near her face and sang Twinkle Twinkle in the most beautiful voice ever. It was such a calm, relaxing experience for Leila. She recognized all of the faces surrounding her and must have felt completely safe.

Off I went to the waiting room.

About 45 minutes later, the anesthesiologist came to get me. "Come on back", she said. "Leila did wonderfully. She's still sleeping, and it's best to let her sleep it off for as long as she will." As we turned the corner I saw my little girl being held ever so gently by one of my dearest friends, Kristy. What an awesome feeling knowing that my best friend was there to comfort my daughter until I got there.

Leila and I could not have asked for a better experience than that.

She is now sleeping soundly in her crib.

Thank you for your prayers, they were heard! We should find out the results tomorrow morning as the doc requested we call him directly to hear them.

Doctor's Out Our Ears......

Forget about the fact that we live with a doctor, we can't seem to stay away from them!
Leila will have her MRI to diagnose the cause of her cerebral palsy. It's a total bummer that anesthesia is needed, but answers will help to complete her lifetime puzzle. I'll be going alone which I'm a little nervous about. Tariq was unable to get the time off work at such late notice. I'm not worried about the test, more about driving home with a child that just had anesthesia and no one to keep a constant eye on her during the hour-long drive home. One of my closest friends Kristy is a nurse in the MRI department, luckily she is working that day. Also, the same anesthesiologist that was there for her surgery will be there for the testing. We love this doc.

I'll be going back to my cardiologist tomorrow. While on vacation I awoke during the night with a crushing, severe pain all across my chest. The color ran from my face and sweat poured out, I began to feel faint. With my son blissfully asleep next to me I grabbed his hand and prayed that if I indeed were having a heart attach that He would just take me now. The pain was that severe. I lied down grasping my chest unable to yell out for my husband sleeping at the back of the trailer. Thankfully the pain passed after about two minutes too long. I've since experienced pain radiating down my left arm and neck with occasional difficulty breathing and palpitations. While I pray it was nothing serious, I'm being pro-active about my health based on my heart history and because I have two of the most beautiful children at home and a very handsome husband. I'm not willing to leave them over ignorance.
***Yes I'm a nurse, yes I should have called 911, yes I am stubborn.***

Jalyn decided to get his first ever sinus infection, he's getting so old! Antibiotics and decongestant should do the trick.

I hope this is the end of it as we are leaving for the magical land of Disney very soon.

If you are reading this and are a praying person, it would truly make my day if you could pray for Leila's MRI day. Please pray that all goes according to plan. Please also say a prayer for a gorgeous little girl named Anara. She is from Kyrgyzstan as well and her mommy and daddy rock! They helped us through our most trying times in our quest to bring Leila home. Anara is having surgery as well. Thank you, I truly appreciate it!!!