Tuesday, March 5, 2013
Taking the Mask Off
"Crisis has happened. What will come of this? ... We have a choice to be conformed to the ordinary, the expected, the easier path. Or we can choose to let this event transform us."
---Miriam Neff
There are days when I feel as if a nuclear bomb just hit our family, and other days I feel as relaxed as can be (those days are few and far between, and normally forced on me thanks to my loving husband). The fact is our family endures a crisis every day. We have learned to live with it, and endure it, and one day we pray we can conquer it.
Living with a child with Cystic Fibrosis is challenging. Just like in all things, I have my good days and I have my bad. I tend to wear my happy mommy mask on those bad days, knowing they will pass, but also not wanting to make anyone feel sorry for me, nor our family, because we KNOW that God is in control and that He knows that we can handle whatever comes our way. But I have realized something recently...wearing a happy mommy mask stinks! I want to be real with you and I want you to know how hard some days can be. I am going to take my mask off today and be real with you...
For starters...No, I don't own a super hero cape. No, I don't own a super hero costume...and No, I don't have any super powers (although the abilities to twitch my nose and have a clean house would be AMAZING). I am a MOM! I supposed that is the greatest superhero of all times, but I am normal...well, some may disagree...but for sake of argument, I am a "normal" mom. I laugh, I cry, I get angry, and scared. I feel empowered and encouraged. I feel weakness and failures. As a mom of three amazing little ladies, I feel blessed, loved, needed and wanted. As a mom of a CFer, I feel tired, overwhelmed, frightened and discouraged.
Lately, I have been struggling with looking at our CF journey with an encouraged heart. Emma's health has been deteriorating and it is so hard for me. With every treatment, medication, and doctors appointment, I feel more concern. In the last year, Emma's PFT's (lung functions) have dropped a total of 88%!!!! For some of you reading this, you have no clue what I'm talking about. At every doctor's appointment, we check to see how well Emma's lungs are working, in the past 12 months, she has had a steady decrease in how well they are doing. Now, let me be clear with one thing, Emma's lung functions are still good! They just used to be AMAZING! They believe it may be caused from the new bacteria in her lungs. We are meeting with Infectious Disease later this week, in hopes that we get some answers.
As a mom of a child with a terminal illness, you struggle with many things, but I feel the need to address one, specifically. **Disclaimer...I'm about to get VERY personal*** Knowing that this horrible illness will take the life of my daughter is so hard to wrap my head around. I have recently watched several families have to bury their babies, teens and young adults due to Cystic Fibrosis. In the USA, one person dies from CF daily! Cystic Fibrosis is not a respecter or persons, age, ethnicity, religion, education or gender. CF is deadly and unfortunately, it wins every time. I don't say that to sound heartless, it's the facts, the truth, the reality of our life.
They say roses are meant for love
And roses are meant for peace
But these roses shed blood
These roses are quite unique
Instead of the typical dozen
We are dealt with 65
We must learn how to function
We must learn how to survive
As our bodies grow weaker
Our minds become stronger
As our roses become the leader
Our days aren’t stretched much longer
Thorns leave behind defections
These soon become our heroic alterations
Our roses aren’t signs of affection
We must learn to accept our gene mutations
We are much more than sisters and brothers
We are cysters and fibros
Once there is a passing of another
The sorrow overflows
Although someone may have passed
It doesn’t mean they have succumbed to the fight
Although that crackly breath was their last
Their strength and soul still ignites
In spite of the fact that roses have deadly thorns
There’s a beauty within them all
Between tears, pain and all of the mourning
We have learned to accept this brawl
Author Unknown
Now, onto the area I am struggling...I am having the hardest time with wanting to make good memories with my girls, especially with Emma. I know some of you think I am insane right now...but the reality is, as Emma's health is starting to fade, I fear making these amazing memories with her and then having to watch her fade away. True, I will have these great memories, but in light of the thought of losing my daughter, those memories will NEVER be enough!! I will only long for more, I will long to hold her her, laugh with her, tickle her, hear her silly jokes, look at her beautiful drawings, see her amazing smile. It will be torture. I sing a song to Emma all the time...
You are my Sunshine, my only Sunshine.
You make me happy when sky's are grey
You'll never know dear how much I love you
Please don't take my Sunshine away
Unless a cure is found, I know one day my Sunshine will be taken away. I hate that thought, it has brought a fear in my heart. I am so terrified of this day. I'm not sure if I am the only CF Mom that feels this way, but I highly doubt it. Now, with all that being said...will I let this crisis dictate the memories I make with my girls??? NO!!!! I long to treasure each moment with them. To look into their precious eyes and know that without saying a single word, they know that they are special and loved. I am a control freak, I want to control the future, but I know I have no control over it...God knows the who, what, when, where, and why of everything...so I tend to stress myself out for nothing!
For those of you that have children, remember to stop and hug them a little tighter today. Stop and listen to their laugh, their sweet little voice. Watch them with amazement today as the play, grow and enjoy life. You never know what tomorrow holds...what are the BEST qualities of your little angel?
Abby has the most giving, loving and helpful heart. She longs to make you proud. She is hilarious and has an amazing sense of humor. Emma has smile that warms your heart, a laugh that brightens your world and a personality that makes you fall in love with her. She is the most sensitive to those that are hurt or ill. Ayva is the most determined little girl. She has the softest heart, she loves to be with her family and she loves to be silly. I'd love to hear about your little ones...no matter how old your "baby" might be...tell me about them...
"Love and Pain go together, for a time at least. If you would know love, you must know pain too." Hannah Hurnard
The fact of the matter is, love hurts. It always has and it always will...but despite my fears, and insecurities, I cling to God's word and know that 'He is close to those who are brokenhearted and He rescues those who are crushed in spirit.' Psalm 34:18. My God is holding me in my time of need and He wipes away every tear that I cry. Remember, that He loves you, He sent His ONLY Son for you!
I hope and pray that you are encouraged...even in the midst of pain and sorrow. Of confusion, frustration, joys and excitement. We all wear a "mask" at times, hopefully, we can all learn to take them off and be real with one another. Thank you for letting me take my mask off today!
Sunday, March 3, 2013
A Mother's Journey-May 30, 2012
A Mother's Journey-Day 9
by Lisa Miller-Ormonde Ritter on Wednesday, May 30, 2012 at 8:24pm ·
God grant me the strength to handle life's challenges, In order to overcome these life long obstacles.
God grant me the courage to stand up for what I believe in, In order to express my true opinions without fear.
God grant me the answers to my questions, In order to find some understanding.
God grant me the piece of mind I so desperately need, In order to remain sane in this inside universe.
God grant me the patience I thought I once had, In order to with stand everything thrown to me.
God grant me the guidance to be able to succeed, In order to be whatever it is I want to be. God I need you now and forever, please help me .
The poem/prayer above was sent to me from a friend and fellow CF Mommy! It really meant a lot to me, so I had to share it with you guys! Today was better then yesterday!
Today, Emma's doctor informed me that her echocardiogram came back normal!!! PRAISE GOD!!! The final word is...Emma turning blue around her mouth is NORMAL!?!?!?! hahahaha Even though it isn't normal to turn blue around your mouth, for Emma, it is part of her vascular make-up. As far as her lungs, she started a new medication to help loosen the mucus. We will re-x-ray her lungs on Thursday to see if it is making any difference. If there is no change, then her doctor will scope her lungs to try to break the mucus plug free. She will be having surgery on Friday to replace her mediport. The reason this is being done is Emma has had her port for four years on July 2, since it has been in for so long there is the concern that her body may have formed around the catheter. If this happens, it can get cause it to get stuck and lead to a more invasive surgery, which we don't want. Emma's doctor said, since her surgeon is able to fit her in this week, then we should be able to go home by Monday!! YAY!!!!!!!!!!!!!!!!!!
Today Emma went "camping"!! The Paul Newman Foundation came and set up a "camp site". They had a camp fire, made of lights, the did arts and crafts, the played games and sang songs. Emma had so much fun. She also played some basketball with her nurse, "Canole", which was adorable to watch!!!
I will be so happy to get home, but I have to be honest...I will be sad to not see some of the amazing staff around her. I can't brag enough about how amazing they are. It is so comforting to be around people that not only take care of my daughter but love, and truly care about her!! The staff has become family and I can't thank God enough for giving us a place to feel so at home. With that being said...I will miss them...but I will be SOOOOO HAPPY TO SEE MY FAMILY!!!! ONLY 5 more sleeps!!!!!!!!!!!! :)
A Mother's Journey-"Trust Me"-March 29, 2012
A Mother's Journey-"Trust Me"
by Lisa Miller-Ormonde Ritter on Thursday, March 29, 2012 at 11:35am ·
"I will never leave you nor forsake you." Heb. 13:5
On hard days like today, I can find myself wanting to throw myself a pity party! Yesterday, I fought with CCS (California Children's Services) because they are trying to deny Emma all of her feeding tube supplies. Their reason...because she has reached the 10-25% for her height/weight! What they fail to understand is that the feeding supplies are the ONLY reason she is growing!!!! Plus if you just look at her weight...she is only in the 3-5%!! So...after calling all her doctors, children's home care and healthnet...I have to just wait for people to do their "job" and try to work it out...UGH!!!
Today, Emma woke up sick. She is coughing a ton, very grumpy and to top it off, she has a fever. It's ONE day from spring break!! The timing just couldn't be any better! :( Then I went to flush her mediport...and low and behold...it WON'T FLUSH!!! Something is wrong with it and it's not working...this is how Emma gets all her IV meds, so without the port, she has to do regualr IV's, which on a CF patient are pointless. So, if we can't get it to work...then we will have to do yet another surgery to replace it!!
In my devotional this morning it said "Before your burden overcomes you, trust God to put His arms underneath you." Underneath me...I had to look this up...dig a little deeper...God want to hold me up durning my times of burden. I looked up "To hold up" in my dictionary and to my shock it says "to continue to live through hardship or adversity". What a picture...God will hold be up during my darkest hours, my times of pressure and burden and through that I can continue to live through the hardship and adversity with God holding me!! My devotion also said "We can trust our faithful God to be there in all your stuggles. 'When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you.' Isa. 43:2"
The hospital just called and they are going to wait to see how Emma is doing tomorrow...if she isn't feeling better than we will have to look at the possiblitly of admitting her during spring break! :( As far as her port...they are calling in a nurse to come look at it and put some medicine in it to try and break up whatever is blocking it!!
Today, as we each face our hardships, our trials, our persecutions, our struggles, we need to remember that "Before your burden overcomes you, trust God to put His arms underneath you"!!
I don't know about you...but it sure enourages me to put a stop to the pity party I was thinking about having! haha Have a great day my friends!!
Love,
Lisa
On hard days like today, I can find myself wanting to throw myself a pity party! Yesterday, I fought with CCS (California Children's Services) because they are trying to deny Emma all of her feeding tube supplies. Their reason...because she has reached the 10-25% for her height/weight! What they fail to understand is that the feeding supplies are the ONLY reason she is growing!!!! Plus if you just look at her weight...she is only in the 3-5%!! So...after calling all her doctors, children's home care and healthnet...I have to just wait for people to do their "job" and try to work it out...UGH!!!
Today, Emma woke up sick. She is coughing a ton, very grumpy and to top it off, she has a fever. It's ONE day from spring break!! The timing just couldn't be any better! :( Then I went to flush her mediport...and low and behold...it WON'T FLUSH!!! Something is wrong with it and it's not working...this is how Emma gets all her IV meds, so without the port, she has to do regualr IV's, which on a CF patient are pointless. So, if we can't get it to work...then we will have to do yet another surgery to replace it!!
In my devotional this morning it said "Before your burden overcomes you, trust God to put His arms underneath you." Underneath me...I had to look this up...dig a little deeper...God want to hold me up durning my times of burden. I looked up "To hold up" in my dictionary and to my shock it says "to continue to live through hardship or adversity". What a picture...God will hold be up during my darkest hours, my times of pressure and burden and through that I can continue to live through the hardship and adversity with God holding me!! My devotion also said "We can trust our faithful God to be there in all your stuggles. 'When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you.' Isa. 43:2"
The hospital just called and they are going to wait to see how Emma is doing tomorrow...if she isn't feeling better than we will have to look at the possiblitly of admitting her during spring break! :( As far as her port...they are calling in a nurse to come look at it and put some medicine in it to try and break up whatever is blocking it!!
Today, as we each face our hardships, our trials, our persecutions, our struggles, we need to remember that "Before your burden overcomes you, trust God to put His arms underneath you"!!
I don't know about you...but it sure enourages me to put a stop to the pity party I was thinking about having! haha Have a great day my friends!!
Love,
Lisa
Mother's Journey-August 24, 2009
August 24, 2009
Emma was admitted to Children’s Hospital Los Angeles (CHLA) on Saturday, August 22…they have been pumping her full of antibiotics and her cough has started to sound a little better. Emma has been having a hard time this stay; I am not sure if it is because it has been 9 months since her last stay or if it is because we are at a new hospital. She has made it very clear that she misses her daddy! Whatever the case, it has been rough.
Upon arriving it was apparent we had been SPOILED at Children’s Hospital Central California (CHCC) (Madera/Fresno)…our room at CHLA is tiny, about half the size of the rooms at CHCC…it contains a two and a half foot chair that pulls out into a bed for me to sleep on, it’s hard and completely impossible to get a “good” night sleep on. Our room, does have a toilet, but no shower or bath! So, to shower I must use one of the two “public” showers assigned to our wing. It’s sort of like going camping and having to hike to the bathroom and shower and hope no one else has had the same idea as you. We have to pay to park here, you can buy a weekly parking pass that will give you in and out privileges but you can’t buy it on the weekend…so I didn’t want to leave and have to pay again. We also have an intercom system in our room that pages the hospital staff at all hours, which to our excitement doesn’t have a volume control. On the plus side, the have a McDonalds that serves iced coffee!
Yesterday, Emma’s nurse Shonda, a tall blonde hair blue eyes middle aged lady with lips that would put Angelina Jolie to shame, helped make Emma happy with coloring pages of Spongebob and Hello Kitty. She also directed me to the closest Target…a 25 FRUSTRATING minute drive, where I found some much needed socks and a cute doctor’s play kit for Emma…I’ll come back to this in a minute.
Last night was LONG…someone was in our room every other hour for one thing or another; we even heard “OOOPPS, wrong room!” I was ever so thankful for the wake up calls. I also learned that the “Just say NO” phrase was written about the fantastic pullout chair they gave me to sleep in, so I crawled into the twin size hospital bed with Emma. I can honestly say; I am not sure which one was worse!
This morning, Emma had an ultrasound of her liver, we await the results. We are also waiting for the results of the MRSA test. Her drug levels were a little bit high so they have adjusted that and we will have to retest her later.
Today, we had four doctors in here at the same time, one pediatrician, two pulmonary doctors and one student doctor. Emma took this chance to use her doctor kit I got her. She walked over and grabbed the case, she took out the shot and walked to the main pulmonary doctor and said very clearly “ Hey, What’s the big idea, come here and get your shot!” We all burst into laughter and she then said, “It’s not funny, it give you an owie!” Again, we were all laughing; she started laughing at us and went to give her stuffed animal a shot instead. It’s moments like this that make me laugh be also break my heart, Emma has gone through so much. She truly understands the pain of a shot in ways that I can never understand. She has had more test and seen more doctors in her three years then I have in my 31 years. She has a shirt on today that says “ONE TOUGH COOKIE,” it couldn’t suit her any better. She is so tough, so strong and so patient. I am always amazed at how resilient children can be.
As you know, Ayva has joined us on this trip…what an experience it has been. The nurses are all crazy about her and we haven’t had any problems with her staying with us, but I think she has had a problem staying with us. She hates it here. She has been crying most of the time and only wants me to hold her. She doesn’t really want to play and she will crawl around but tries to escape when the door is open…she wants outta here…I can’t blame her.
Today, we have had the pleasure of listening to the hospital test the fire alarms since 6 am. Yep, it’s wonderful…every 5 minutes; these extraordinary devices would chime, like a child banging on a xylophone. It was especially gratifying during naptime!
Tonight, I have an old friend coming to bring me dinner. I am especially excited to see her, since it has been about 15 years. I hope they stop testing the fire alarm by then; it may drive her as crazy as it is me.
Thank you all for letting me vent and for your constant thoughts and prayers. We love you all…I’ll update you more soon!!
Love,
Lisa ( plus Emma and Ayva)
Emma was admitted to Children’s Hospital Los Angeles (CHLA) on Saturday, August 22…they have been pumping her full of antibiotics and her cough has started to sound a little better. Emma has been having a hard time this stay; I am not sure if it is because it has been 9 months since her last stay or if it is because we are at a new hospital. She has made it very clear that she misses her daddy! Whatever the case, it has been rough.
Upon arriving it was apparent we had been SPOILED at Children’s Hospital Central California (CHCC) (Madera/Fresno)…our room at CHLA is tiny, about half the size of the rooms at CHCC…it contains a two and a half foot chair that pulls out into a bed for me to sleep on, it’s hard and completely impossible to get a “good” night sleep on. Our room, does have a toilet, but no shower or bath! So, to shower I must use one of the two “public” showers assigned to our wing. It’s sort of like going camping and having to hike to the bathroom and shower and hope no one else has had the same idea as you. We have to pay to park here, you can buy a weekly parking pass that will give you in and out privileges but you can’t buy it on the weekend…so I didn’t want to leave and have to pay again. We also have an intercom system in our room that pages the hospital staff at all hours, which to our excitement doesn’t have a volume control. On the plus side, the have a McDonalds that serves iced coffee!
Yesterday, Emma’s nurse Shonda, a tall blonde hair blue eyes middle aged lady with lips that would put Angelina Jolie to shame, helped make Emma happy with coloring pages of Spongebob and Hello Kitty. She also directed me to the closest Target…a 25 FRUSTRATING minute drive, where I found some much needed socks and a cute doctor’s play kit for Emma…I’ll come back to this in a minute.
Last night was LONG…someone was in our room every other hour for one thing or another; we even heard “OOOPPS, wrong room!” I was ever so thankful for the wake up calls. I also learned that the “Just say NO” phrase was written about the fantastic pullout chair they gave me to sleep in, so I crawled into the twin size hospital bed with Emma. I can honestly say; I am not sure which one was worse!
This morning, Emma had an ultrasound of her liver, we await the results. We are also waiting for the results of the MRSA test. Her drug levels were a little bit high so they have adjusted that and we will have to retest her later.
Today, we had four doctors in here at the same time, one pediatrician, two pulmonary doctors and one student doctor. Emma took this chance to use her doctor kit I got her. She walked over and grabbed the case, she took out the shot and walked to the main pulmonary doctor and said very clearly “ Hey, What’s the big idea, come here and get your shot!” We all burst into laughter and she then said, “It’s not funny, it give you an owie!” Again, we were all laughing; she started laughing at us and went to give her stuffed animal a shot instead. It’s moments like this that make me laugh be also break my heart, Emma has gone through so much. She truly understands the pain of a shot in ways that I can never understand. She has had more test and seen more doctors in her three years then I have in my 31 years. She has a shirt on today that says “ONE TOUGH COOKIE,” it couldn’t suit her any better. She is so tough, so strong and so patient. I am always amazed at how resilient children can be.
As you know, Ayva has joined us on this trip…what an experience it has been. The nurses are all crazy about her and we haven’t had any problems with her staying with us, but I think she has had a problem staying with us. She hates it here. She has been crying most of the time and only wants me to hold her. She doesn’t really want to play and she will crawl around but tries to escape when the door is open…she wants outta here…I can’t blame her.
Today, we have had the pleasure of listening to the hospital test the fire alarms since 6 am. Yep, it’s wonderful…every 5 minutes; these extraordinary devices would chime, like a child banging on a xylophone. It was especially gratifying during naptime!
Tonight, I have an old friend coming to bring me dinner. I am especially excited to see her, since it has been about 15 years. I hope they stop testing the fire alarm by then; it may drive her as crazy as it is me.
Thank you all for letting me vent and for your constant thoughts and prayers. We love you all…I’ll update you more soon!!
Love,
Lisa ( plus Emma and Ayva)
Coloring with Emma
Emma was showing off her new panties to everyone! Lol
Laying in bed with Emma at Children's Hospital LA
Our super tiny room at CHLA
Doing treatments in the hospital...she wasn't very happy about it!
Subscribe to:
Comments (Atom)