18 Months Later...

July 21, 2017

Today marks 18 months since my third child went to be with Jesus.  18 months seems so long ago and yet just like yesterday all at the same time. If you are a mother you know the feeling of bringing home your baby for the first time from the hospital and making all the adjustments needed to fit this new person in your life.  I tell people that it’s one of the strangest feelings to have to have done the opposite.  This little person you have been in charge of, making sure they are fed, clothed, cleaned, and loved no longer is needed from you. There is an empty spot not only in our house where her toy corner use to be or where her head would sleep, but in our heart and in our soul.

I am so grateful for all 5 years and 25 days we had with Faith here on Earth.  She has taught me soo many things.  Like how to advocate for your child in every single sinaro, from daily life to dealing with doctors and therapist.  They think they know best but parents know best about their own child.  And even if we don’t really know what to do, we have to act like we know.  She taught me how to be a real fighter, never give up and always SMILE.  She taught me how to not judge the ones around us.  There are so many ways she had enriched our lives.  It’s crazy to think about how many things she has taught us and she was only here a short time.  The Lord only takes the ones off Earth that have completed their mission here.  That is why she is no longer here, mission complete.  But the good news is I didn’t “lose” Faith, I know exactly where she is, in heaven with our Heavenly Father waiting for us to join her.

I still get asked “How are you and the family doing?”  I don’t know how to respond sometimes.  Most days are good but some days I miss her like CRAZY.  I can ALWAYS cry, drop of a hat about her.  They might be happy tears, remembering such wonderful things she did in her life.  They might be sad tears, because I miss her and want her to be in her wheelchair or playing with her brother and sister.  Please continue to ask and please don’t be afraid to EVER mention her name to any of us.  We love to talk about her!  She is mentioned every single day in the Pfeifer home.   

Jeremiah 29:11  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.

Every single birthday for the rest of my life here on Earth I will wish for...one more, just one more hug with her pat pat on my back and then her look and me and hold my face with both little hands then kiss me really big then of course end with a smile looking at me.


I miss her EVERY single day.

Thanks for reading,
Ashley

Faith Memorial Celebration

For those of you whom were unable to attend the Memorial Service it is posted below. 



I have also include the my contribution to the service, for those who have asked for it.



Thank you all for your love and support.



Love,

The Pfeifer Family

For Faith

About 5 years and nine months ago Ashley and I learned about a very exciting addition to our fun loving, busy body, close nit family. We embraced this news with excitement. We told our immediate family and some close friends. We talked about names and tried to fit this new life into our life with great joy and anticipation.

Then we received some news. The kind of news that no expecting family wants to hear. We were asked questions. The kind of questions that no expecting family wants to be asked. Fear ran rampant in our hearts as we could only guess as to what was to come with this new life.

We prayed hard. Sometimes we prayed for miracles, sometimes we prayed for strength, sometimes we didn’t know what to pray and you prayed for us.

With the fear of not knowing what was to come we embraced one another and our faith and stepped forward into a world we could have never imagined. This is how our daughter came to be named Faith. For we knew that whatever the challenges lay ahead of us we could not face them without faith in our God.

On December 27th 2010 we gave birth to a beautiful blue eyed baby girl. She would change our life forever. She would outlive and outperform all of her doctor’s and therapists expectations. She would impact more people than we will ever know.

From that point forward Faith became our life's work. Our home became an extension of Children's Mercy Hospital. Ashley and I became experts in Faith’s medical conditions. On multiple occasions we would advocate for her life. We would dedicate our time to her therapy. Our energy would be sapped by sleepless nights and heavy equipment. Our family would pour into her all of the love that we had to offer. Our eyes beamed with pride as Mason and Elizabeth selflessly gave their time and attention to her when they so much more deserved ours. Nurses invaded our home. Some of them became a cherished parts of our family. We love you Amy and Hanna. Our support was unending. When we needed time off work, it was never questioned. When we needed financial assistance people gave generously. When we needed prayer the word was spread to the ends of the earth and people prayed. 

Many people look at our family in disbelief. They make comments like “I don’t know how you guys do it.”

Make no mistake about how her light has been so bright. Make no mistake about where this unfailing love has come from. Make no mistake how this patience has endured and make no mistake on how it is we will come to see her again. We receive all of these things through our Lord Jesus Christ.

Faith was the perfect addition to our family. Her contagious smile always drew us together. Her advances in her therapy gave us hope. Her moments of distress reminded us of how fragile life was. All of the while drawing us toward God. It was as if the whole time she had one hand heaven holding on to Jesus and other hand here on earth holding on to us, constantly trying to pull us together for a big group hug and kiss.

She was a gift.

A gift that our family will carry with us until we see her again.

Our family will always be 5 strong.

Throughout Faith’s life, our family has rallied around her and nurtured her and raised her the best we knew how. All of the while we have cherished this gift.

Little did we know that this gift was not intended just for our family. God’s plan is always bigger.

One of Ashley and My favorite stories is when Ashley and the Kids were out shopping at garage sales. Ashley was excited about the purchase of some wash clothes and as she was headed back to the van she yelled to Elizabeth “look what I got for Faith”. The lady who was running the garage sale, a total stranger, shouted to Ashley “wait are you Faith’s Mom”. Ashley was surprised by the question and answered “yes”. The lady responded “I read your guy’s blog every day and pray for you guys”.

This type of thing happened on more than one occasion.

As you look around this room you will find so many who have been touched by her story.

Faith thought that everyone needed big group hugs and she is still giving them.

As her story continues to pull at your heart, know that it is her. Her grip is not strong, but she is trying to pull you towards Jesus in her tender way.

Please receive this gift, carry it with you as you go, feel free to share it with others, until we come to see her again in heaven. 

It is now September 17, 2015 and I can tell you a week ago I would of told you all the Faith is 100% back to base line and even better!

We have said goodbye (still crying) to Amy, Faith's nurse of 3 years.  She moved to Washington.  We have hired a new nurse, Hanna!  She has been with us since summer 2015 and she is fitting it well! She works Monday- Thursday. Faith (and the family) really like her.  She pushes Faith to do her best and gets all the daily duties for Faith done, and that's ALOT!!

All her face muscles are back!!  She does still have a slite issue with one of her eyes pulling in some.  Every time we go to the eye doc she is always impressed how well Faith's eyes are doing.  The doctor told me years ago Faith is one of her only patients with SB (spina bifida) and not wearing glasses. ;)  Her eye pulling keeps getting better and there was talk of going to the OR to have it fixed but no talk anymore, at least at this point.

Faith is walking with her walker faster and better, then she ever has!  A new brace for her right leg and it really helps with walking and standing.  It is called a KAFO (knee, ankle, foot, orthosis).  She walks easily 40 feet, which is a long way!  We have her free stand next to a table for one of many of her daily exorcises and she will stand or an hour with no break if we would let her.

School for Faith has opened up a whole new Faith!  She LOVES school, her teacher is amazing, we love Ms. Hanni!!  I really didn't want to send Faith to school yet but, I knew she really wanted to go and that she would be protected by God.  But you must remember that not only is she my youngest but she has all these needs and she wouldn't be in the same school at the older two siblings.  But after talking to and seeing her teacher, Ms. Hanni work with the students I became so much more at peace with Faith being at school.  She is in pre-school Monday-Thursday in the afternoons only.

Really, I can't tell you in words how proud I am of Faith, for how far she has come since last October!!  The doctors said she wouldn't make it, but here she is still on earth with her "Mama", the ONLY word she can speak with her voice.  I feel soo blessed, because when Faith does speak with her voice she says my name.  I know that is selfish, but it's true.  I pray that one day she will say Dada.  I think she can do it!

Now back up one week from today to, Friday, September 11.  We have hired a new nurse that only comes on Friday.  Since I work in the morning Monday- Friday we needed someone to watch Faith on Friday since Hanna is Monday-Thursday.  It was the new nurses 2nd Friday, her and Faith and Mic got a call at work from her say "Come home now, Mic!!!"  He of course went right away and was home with in minutes.  Faith was not breathing and the nurse was doing chest compression.  They got her to start breathing again but she was just lying there in her bed not moving, but oxygen levels were 100%.  So the best way to describe it is, it was like she was in a comma.  She ended up not moving her arms or legs for a little over an hour.  It was really hard to see her this way.  Normally ( i laugh saying normally) when she passes out, she snaps out of it pretty quickly and back playing in no time at all.  The nurse said Faith didn't want to do an exercise, and got mad and passed out.  Faith does get mad and pass out often but not as much anymore.  That all happened in the morning and by 8 pm she had been sleeping for about 2 hours and I went in her room to check on her and she saw me and reached up with both arms fully extended and gave me a big hug and in that moment I said THANK YOU JESUS!! She has regained control of her arms!  By the next morning she was what I thought 100% back but when we were walking she is still really weak.  Please pray she will regain the strength in her back and legs to be able to walk like she use to.  I know time is the enemy, isn't it always? :)

On the morning of Friday, October 24, 2014 Faith’s nurse, Amy, was just getting Faith out of bed around 7:15am. Amy yelled out “Ashley, come look at Faith’s eyes.” So, I went into her room to take a look at her eyes.They were not tracking the same. One eye was looking one way and the other, the other way. I didn’t think to much of it because it was morning and things like this happen all the time. Many times, with Faith, something will not be normal in the morning and then later that day everything will be back to normal. I was going out of town for the weekend and so I had Mic to come and check it out since he was going to be in charge of her for the next few days. Fast forward to about 4:00PM the same day. I called Mic to check in and he told me that Faith was still not tracking and was more drooly. Then there was a short silence. And I said “What else?” I could tell there was something he wasn’t telling me. He said “Faith has stopped smiling. She is unable to smile.” I said “You had better call the doctor and tell her just to keep her updated.” Mic called and they ended up going to the ER at Children’s Mercy Hospital Friday evening. Faith’s doctor was concerned there could be a shunt malfunction. At the ER, Faith had some xrays and CT of her head. All was well with the shunt. The ER sent them home.

Monday, October 27, 2014 Mic and I went with Faith to a routine doctor visit with the Endocrinologist in Kansas City. This appointment had been scheduled for months. As we were leaving the Endocrinology office, Faith’s primary doctor at CMH (children’s mercy hospital) called and asked if we were still in Kansas City. She asked us to come to her office at the hospital so she could get a better look at Faith and hopefully to get her in for some more testing. When we got there the doctor was looking Faith over and asked “When did she stop blinking?” Mic and I had no idea that Faith wasn’t blinking any more. The doctor admitted Faith to the hospital for an MRI and requested the neurosurgery doctor look it over.

Tuesday, October 28, 2014 MRI complete

Wednesday, October 29, 2014 Neurosurgery talked to us and said he wished Faith had a “healthier spine”. Well, we all wish that. He didn’t say much more. He did say we will just have to wait and see if she gains her control back in her face. Complete side note: She knows when she needs her nose or mouth suctioned or wiped off. She can feel her hair on her face. But she can’t smile, blink or move her nose. To me totally weird.

Friday, October 31, 2014 I got a text while at work from Faith’s nurse saying, she can’t wake up Faith from her nap. Fast forward about 30 mins. I went home and when I got there Mimi and Papa (Doc and Phoebe) were there.

This day was Amy’s (Faith’s nurse and Best Friend) last day with us and my parents came over to tell Amy goodbye. They didn’t know Faith wouldn’t wake up. But Faith is totally in LOVE with my parents and she woke up at the sound of their voices. Amy has been with Faith for 3 years and with Faith being 3.5 years old it’s a big deal that Amy is no longer with us. :( I am still having a hard time with no Amy. She became part of our family and one of MY dearest friends. She wasn’t just a nurse to me she was my helper. She treated all three of my kids as if they were her own. She didn’t take care of just Faith, she took care of all of us. I never had to doubt anything she did or her question her judgement on anything EVER. I miss her SO much! Amy moved to Washington State to be close to her father. She has a new job being a nursing director and I’m sure she is Amazing!

It is now December 7, 2014 and Faith has gained some control in her face. Her right side is better than her left. She is now able to wink not blink but wink her right eye on command. It’s so strange that someone can wink but not blink. I am still learning new things about the human body almost everyday from this girl. She is pretty much base line (back to her normal self) other then her face muscle control. She is back to being her cute sassy self.

New Found Freedom

There has been a lot going on in Faith’s life good and not so good.  Well I will just be touching you up on the latest.   We have been waiting on a wheelchair for her for a while now.  First we had to wait on the insurance then we ordered it and it takes about 2-3 months to come in.  But we got it and Faith loves it!  It has opened a new adventure for all of us.  She has never had to “stay with us” in public places because she has always been in our arms or in her stroller.  Also new to her is hearing “you can’t go over there” and “wait for us”.  So interesting that all this is new for a 3 year old.  I just love seeing her in it!  One more small step closer to her being more independent.  I am very ready for this independence.  I remember when she started crawling EVERYWHERE I love it!!  Below is a video of Faith on day two of her wheelchair.

I am going to change the subject a little and say that I look at my life after I was married but before kids and think I am so blessed to be married to my best friend.  Wow that was 10 years ago and here we are still totally in love and still Best Friends.  I wouldn't be able to do to my day to day things without this man in my life.  Oh how I love him.  Then we had Mason and I thought if Mic is half the Dad that I had growing up then Mason will live a life better than most.   Mason is my tender hearted, helpful, loves others more than himself, soccer player boy. Here we are 7 years later and WOW, Mic has been a wonderful Dad!!  (Well of course no Dad is better then mine ;) ) Then we had Elizabeth and I thought I am so excited to had a girl with the challenges that come with that.  I hope and pray that I can be my daughters friend as my mother is my friend.  Always there that no questions asked.  Mic got his princess, ballerina, soccer player.  Being a father to girls is a fine line of not meaning to push them away but letting them know you are always there for them.  Mic is the best dad to Elizabeth.  She is a special little thing.  Then we found out I we were pregnant once again and decided to not find out the sex of the baby.  I thought I wouldn't be able to handle this but it ended up being a blessing.  We went in for monthly sonograms  in KC at a specialist and they never told us what the sex was.  Then came delivery day and it was the one thing I was looking forward to, the one thing that was going to be for sure.  I was going to find out the sex of my baby.  I wasn't sure if this baby was going to survive the delivery, but I would get to find out the sex.  Then before the Doctor was able to say the sex for sure Mic saw it and leaned down and said, “Ashley it’s a girl!”  one second later the doctor says “It’s a girl!” .  I started to cry.  I  was not able to see or hold my baby and I knew that was going to happen, but I had no idea it was going to be so hard to see her in a little bed next to me and not be able to really see her.  She was on her tummy with a gigantic hole in her back.  And that is where the adventure started with her….  And here we are today,  Mic and I still together and more in love than ever before!  I will repeat myself and say He is my best friend the one and only I share my true self with the one and only who knows me better then I know myself sometimes.   Why did I share all that?  Because Jesus loves us more than we can even grasp, more than I love my children or my husband.  Crazy to think about.  Would you die for your family?  Your response of course is yes but if some stranger had a gun to your head it would be a little more real.  Would you still do it?  I remember hearing about a story where the grade school student was in the school where the shooter was and she was proclaiming his name and the shooter asked her do you love this Jesus?  She responded yes i do love him.  He shot her.  She went down Loving Jesus to the last second of her life.  I just pray that I would do that and that my kids would too!  Who ever you were you made an impact on my heart and where her parents are Jesus is soo proud of you!  

Wow that was off subject but I guess on my heart.

Having Faith has been wonderful.  I look back over that last three years and think about everything I have learned medically and how my perspective has changed on so many things. What, you don’t like it when your child won’t stop talking, talk back to you, or won’t stop screaming because they aren't getting what they want?  I would LOVE her Faith to say one word with her sweet voice that I know is in there somewhere.  One word!  That’s all I want, one word.  BUT then I think about all the women who can’t have their own baby, or lost a baby and in that moment I praise Jesus for giving me a warm body that smiles at me all the time to hug.  Yes I get frustrated because she can’t talk but I know I am blessed with what I have!! 

A couple weeks ago Faith got her big girl bed!! She is so proud and is doing great in it!!

Faith Shows Off Her Signing Skills