Tuesday, May 27, 2014

Unfair Moments

As a mom you want the very best for your child.  As a mom you want to see your child succeed at everything they do.  As a mom you never want to see your child in pain, you would take it all if you could.  As a mom you want to protect your child and see the very best for them.  As a mom, you love your child so much that you would do anything for them. 

What happens when you can't protect your child?  What happens when the plans that were laid for your child don't match your dreams?  What happens when the journey that God has planned for your little child is full of pain and heartache?  What happens when the journey your child is on does not seem fair?

I think that this "unfair" feeling comes in many different forms.  I thought it was unfair at first that my child would have Down syndrome.  Then I thought it was unfair that I had to hand my seemingly healthy child off for a major surgery that would make her very sick.  Then I thought it was unfair that my child had to waste her newborn days (over five months of them) laying in a hospital bed fighting for her life.  And the list goes on. 

However, through these "unfair" moments, they have grown me and stretched me.  These "unfair" moments have made me see things that I would have completely missed.  They have broken me and made me stronger.  But the "unfair" moments have taught me some very important lessons.  Lessons that have changed me to the core.  I am better because of these "unfair" moments and I see so much in Lydia because of these "unfair" moments.  Her sisters have become more compassionate and loving sisters (and people).  Her dad has become a better dad because of these "unfair" moments.  You hear the phrase to stop and smell the roses, but do we really?  I feel like these "unfair" moments have made me and I am so grateful for those.

I walk to the bathroom and see Lydia's socks that she threw over the gate because she pulled them off for the hundredth time today.  I hear the gentle slap of her hitting her sister over the head.  I look over to see her mischievous smile as she brushes her head against her sister's and gives her an "I'm sorry" hug.  I hear the giggles and laughter that fills the living room as she is suppose to be settling down for her afternoon nap.  I hear the pitter patter of feet running across the floor as she runs away from her sisters.  I feel the tight grip of her small chunky hands when she embraces me for a hug. I see her walking on the table after she pulled out the chair and climbed up.  I see her smile as she says, "I know I was not suppose to do that, but look at how cute I am."

Life seems just perfect.  Lydia is doing all of the things we dreamed of, the things we prayed for.  So far God has allowed me to live this dream and experience things with Lydia that I never thought were possible.  I have to remind myself of that over and over as she won't listen, she screams, or she just does the "normal" two year old stuff.  For moments I forget that she was ever sick, there is no down syndrome, there are no delays, there is no throwing up, there is just life.  It is not life that I thought I would have, but the life that God has given me on this crazy journey I call life.  I enjoy it, I embrace it; all of it, the good, the bad, the ugly, and the miracles!

To think that she has to go in for another procedure terrifies me.  Life is good right now, considering.  I have learned so much, I have grown, my faith has increased, I have changed, and I believe that I have become a much better person.  Isn't that enough?  Isn't there room for a break, a little rest?  I have been tested to the max and I haven't broke yet.  God has carried me, He has shown me miracles, and He has shown me very dark times; but through it all He has shown me just how faithful He is.

Even though I try to rest in that, I just can't help but be nervous and anxious.  I know that Lydia's life will be full of procedures and blood tests and worry and waiting.  I know that she will always have some kind of issues, but I am not ready for it, just not yet.  I want to wait just a little.  I want to enjoy her, I want to watch her develop and I want to soak in her very contagious personality just a little more.  I want to rock her and smell her sweet smell.  I want to watch her get in trouble and see her sweet smile.  I want to embrace all of the moments life has to offer.

I don't want to have to hand her off to a doctor.  I don't want to have to sit and wait and worry.  I don't want them to go over the risks and potential side effects.  I don't want to know about the what-ifs.  I don't want to hear the best case-worst case scenario.  I don't want to, but I am called to this life.  I am called for this journey.  And if I have learned one thing at all on this journey, it is to embrace the moment and not fight the journey.  I know that it is not fair, but nothing is.  All I can do is my best.  Love her as God has called me to love her, hold her and be the mom that God has called me to be to her, no matter what.  Fair or unfair, this is the life God has given me and I will continue to rest in Him.

As I prepare Lydia (and myself) for another procedure, another round of waiting, another unfair moment, I will be thankful for what I have been given.  We have a life with Lydia that is full of blessings, that is full of love.  I have tried to live every moment to the fullest and I don't regret our decisions, our time with her, or this life.  It is not fair to see your child hurt or sick.  It is not fair to hand your child off to a doctor, to sit and wait for the results.  It is not fair that they are looking for cancer or more issues.  It is not fair to think about what they may find.

But as I have learned, nothing is fair.  And if every moment was fair, we would not grow and we would not learn.  If everything was fair, life would be boring.  I will take these "unfair" moments because in them I have learned so much.  To think that life was not fair because I was having a child with Down syndrome, it was plain silly.  My life is so rich and full of joy because of Lydia.  See, I can be wrapped up in the unfairness of it all, or I can learn to take the fair and unfair moments and learn and grow.  I can take these unfair moments and make them the blessing in disguise that they are.  Tough.  Yes, but a blessing none the less.

And it does not take away the pain or the feelings of unfairness, but I will chose to fight and stay strong for Lydia.  I will chose to try to look at the blessings because of these "unfair" moments.  After all, this is the only life she knows and by looking at her, it is a great one!

Please keep Lydia in prayer on Thursday.  She will go in for a couple scopes and a biopsy.  We pray that there is no cancer, there is no inflammation, that there is no allergy, and that there is no narrowing.  We pray that Lydia handles the not eating well, and that she handles the breathing tube and the anesthetic.  We pray that God will continue to hold us and guide us.  We pray that she will continue to be strong and healthy.  Thanks in advance for your support and prayers!

Thursday, May 22, 2014

Losing Control

I stood there in a complete panic as images of Lydia were flashing through my mind.  I saw her for the very first time, I saw her as I handed her over for her first surgery, I saw her laying in the bed and the monitors flat-lining as she turned blue, I saw her super sick, I saw her in the car seat for the very first time, I saw her swinging in her swing for the very first time, I saw her very sick and I saw her being her typical two-year old self.  I was completely paralyzed by the chaos I was experiencing and these flashes of memories that we have endured with her.

This is not really how I envisioned our first school visit to go.  I was overwhelmed by what I was seeing and what I was hearing.  As I was asking questions and getting the annoyed looks, I became more and more frustrated.  As I looked around I became more and more panicked, knowing this is not where we needed to be.

Starting off our day, the speech therapist was not very happy that I wanted to be present.  With the medical issues that Lydia has, I was not comfortable dropping her off in unfamiliar hands.  For goodness sakes, my parents nor my in-laws watch her for extended periods of times.  We have taken a lot of flack for our decisions, but my husband and I still stand firm that we are doing the very best for Lydia.

I take my parenting responsibility VERY serious.  I believe that God has entrusted me with Lydia and it is my responsibility to raise her according to God's plan.  I understand that one day I will stand before the Lord and I will be accountable for the decisions that I have made.  I realize, I am by no means a perfect parent, but I try really hard to read the Bible, listen to God and raise her how I believe God is calling me to raise her.  I know that my husband also takes his responsibility very important and we try to work together as a team.

I realize that this is not the norm in society these days.  I know that it is a lot easier for me to drop her off and have the teachers and therapists do what they are familiar with.  However, I know that this is not what is in the best interest for Lydia.  Some days it is so hard to keep battling, to keep asking the questions, and to keep standing firm for how we want to raise Lydia.

It is so much easier with my other girls.  My other girls are not tied to a school district, they do not have an IEP, they do not need therapies.  In my opinion, three is way too early to go to school (and she seems too tiny for it!).  However, if we want to get the therapies that she needs, which in my opinion is very important, we have to.  I guess we could try to do everything through private insurance (most likely with a fight) or we could somehow attempt to pay for everything out right?  But this is where we are at and what we have to do.  I know that God is testing my faith and in turn my faith is being strengthened.

As hard as it is, as exhausting as it is, this is what I need to do.  Lydia needs the very best and I am the one person here on earth that knows the most about her.  I want to be involved and included in her education.  I want to make the decisions and I want feels as though I have control over what happens with my daughter.  I have learned several times, I really don't have any control in many things that I want, but I know that for her education I need to have that control.  In many ways I feel like we have fought too hard to get here, that I need to keep fighting to get exactly what will benefit Lydia the most.

My other girls go to a private school and it is my wish that Lydia would go to school with their sisters.  That complicates the process a bit more.  However, I was so touched when I talked to the principal of the girl's school and he said that they would do whatever they needed to make things happen.  He wants to bring in the teachers of the school for the IEP meeting so they can better understand the process, the goals for Lydia, and what is in her best interest.  WOW!  Completely different than our visit to our school district.  I want someone to teach my daughter who has the same passion for the Lord as I do, who is teaching because they really want to and who is passionate about discipline.  We have found that in the girls' school.  We want that for Lydia too!

I hate the IEP process and I am fighting it.  One, I hate it because it focus' a lot on what she cannot do.  It focus' on how far behind she is.  Two, because I feel like I have no control.  I understand that there are people who educate people with special needs and there are people who maybe know more than me in these areas.  However, there is no one who knows more about Lydia than I.  I want to be a partner in her care.  I want her team to listen and to make decisions together.  I fight it because I don't understand and I really don't want to lose control of my daughter.  She is so young and I just want to hold on to her a little longer.  Obviously, I still feel like I lost so much of her being a baby that I want to hold onto these moments and cherish them. 

I guess, once again, I realize that I have no control.  I leave it into God's Hands.  I try to do what He is calling me to do, I try to raise Lydia (and all of my girls) the way that God wants me to.  And if that means making waves, then that is what I need to do.  I still, however, need to conduct myself in a godly manner.

Thursday, May 8, 2014

The Mom Behind Me

I quietly walked to the front of the room to take some pictures of Lydia receiving her very first award.  What a great day it was.  She posed for the camera so well and listened just as well as all of the others up there.  As I leaned back in the chair to say a quick prayer, the mom's conversation behind me struck me...H-A-R-D.  She sat there criticizing E-V-E-R-Y-T-H-I-N-G.  This kid was not standing correctly and that kid was not behaving properly and then she said that her kid never would do that.

I had to chuckle to myself a little.  Where do we get this sense of judging other people's kids?  Where do we get an entitlement to look at the cover of something and form an opinion based off of no facts at all?  And then I wondered if we even realize how silly some of these thoughts sound?!

I returned to my seat deep in thought.  I wanted to turn around and say something to her, but I allowed the words to just soak in.  I gave myself some time to process this.  I am glad that I did.  It has lead me to some conclusions and some changes I must make in my life...NOW!

I often times am so quick to judge myself.  I usually am because I am a parent of a special needs child.  Yes, somewhere I feel like that has entitled me to some kind of cape and hero status.  If you don't believe me, just look on Facebook.  And if it is on Facebook it has to be true.  In all honesty, sometimes you read those cards and than start believing them.  And in all reality it could not be further from the truth.

I am no one to judge anyone, no matter what.  I should be the first to understand that because I am a mom with a child who has special needs.  After all I advocate very hard for acceptance and inclusion and use the motto "she is more alike than different."  Too bad her mom is no different than any other mom (OK...the majority of moms).  I still cast judgment where judgment does not belong.

My hard is completely different than your hard.  Your hard is completely different than my hard.  That is OK.  That is actually how God designed us to be.  You may not understand what I am going through, I may not understand what you are going through, BUT we can still support each other on our motherhood journey.  We can still come along side one another and pray with each other, hold each other accountable for our actions, remind each other of verses and Scriptures, hold one another, encourage one another, and be there for each other.  WOW!  I need to do that more often.

There is more in this world than my little problems, no matter what.  And my battles may be large in comparison to others.  However, I don't want my child compared to others, so why would I compare my hard to someone else's hard?  Why do I think that at times the universe revolves around me?  Why do I feel like I am the only one dealing with this issue. 

Maybe it is because us as mothers judge each other way too much instead of banning together.  Maybe it is because we are so concerned with our hard that we feel like we are too good to help someone else out who doesn't have a special needs child (after all I wear the cape and they don't).  Just because they are not walking my path does not mean that they can't be exactly what I need.  Maybe I need to reach beyond myself and help someone else out?  Maybe they have the words or the hug that I need to help me through my day.

I had one of those days today, a hard day.  My Lydia does not want to eat, she is disobeying, we are having problems with her transition, I am so over the schools.  The list can go on and on.  However, it does not mean that I have to have another mom who wears a super hero cape (I am so kidding about the cape by the way!) to come and rescue me.  It could be a teenager who scoops up my child and kisses her and tells her how cute she is.  It could be my reaction to how my daughter responds to it.  It could be another mother who just needs a little helping hand and in returns is the highlight of my day.  See, my ego gets the best of me most days, my hard consumes me, and my judging ways pushes people away.

I am going to encourage myself to encourage other mothers more often.  Even if I don't think their hard is my hard, it is still hard for them.  Even if I am in a very tough position, I am one step away from a major break down, I want to encourage another mother and not judge.  I want all of us mothers to ban together and help one another out.

If we didn't compare and judge and we just helped, we would all be better mothers.  We would have more shoulders to cry on, more places to hang out in the morning for coffee, we would have more encouragement, more laughter, more mom's nights out.  So life would just be better.

So I am challenging myself to not wear that unspoken ego of "I am a special needs mom hear me roar."  I am just a mom on her own path of motherhood.  Some days are really tough, some days are really good.  I feel like I have experience to share with others and wisdom about our journey; but I feel like I also have ears to listen, to learn from others.  I know that I have a whole lot of encouraging to give other mothers.  I know that I can create a better life for me and my children if I stop the judging, give grace and encourage other mom's.  I don't want my daughter to be judged for who she is so why am I judging others for being who they are?

Happy Mother's Day to all of you wonderful mothers out there.  Motherhood is a tough journey.  It is our own journey that God has created just for us.  It is a journey of love and loss, of happiness and celebration, of heartache and hurt.  But it is the most rewarding journey ever.  I promise that I will try to support you and not judge you. 

Tuesday, May 6, 2014

To My Nurse

You entered the room as a stranger, not knowing more than the diagnosis of Lydia.  You left the room my friend, someone who changed my perspective.  You never once judged me or my daughter or my family; you understood we were doing everything that we needed to for Lydia.  You respected my space if I was on the phone, you would come back or you silently went around the room to make sure Lydia was doing OK.  If I was holding Lydia you never made me give her up, you put yourself in some awkward positions to ensure I got all of the cuddle time possible with this sweet little girl.

You made sure that my daughter was in the safest place possible.  If there were problems, you helped us brainstorm an idea to make it better.  You sat with me when I would cry, you were my voice to the doctors when I didn't understand why.  You were a friend who understood and you cared so much, more then you ever had to.  You celebrated all of the small moments with us and helped us create memories that we would forever cherish.

You taught me how to care for my daughter when I could not.  You loved my daughter as your own.  You understood what calmed her, what soothed her, what she liked.  You encouraged me to take a break that Lydia would be in your loving arms.  You were much more than a nurse, you were her second mom.  You were patient and kind and always had a smile.  You understood just how difficult it was to have your child lay there, you helpless, and little that could be done.  You spent far more time in our room than you ever should have.  You held me when I was weak as if I was the patient you were caring for.  You loved our entire family.

You were the highlight of Ellen and Allison's day.  You spoiled them rotten and gave them hugs.  You included them in the care of their sisters and the smile could not be wiped away.  You reassured them that everything would be OK.  You explained the lines and the procedures and wiped their fears away.  Ellen and Allison always asked who was caring for Lydia that day and wanted to stop by to see you too, not just their sister.  You became a safe friend for them in a time of complete turmoil.  You became part of our family and for them it was hard to leave you.

There were days when we were not sure if Lydia would make the day.  You made sure you never left her side.  You deprived yourself of food and the bathroom just to take care of Lydia, just one more care to do.  You were Lydia's voice when you knew something was not right.  You told the doctors of this patient you cared for day and night.  You loved her like your own and it showed.

The day the blue button was activated in Lydia's room, you were calm and collect as you rushed to save my daughter's life.  You took charged and you even talked to me, calming me to make sure I knew you had it under control.  The doctors rushed in long after you had everything control and you told them of this fragile life and you fought for her.  I will never remember the tears I saw streaming down your eyes as you fought with everything to saver her life.  You loved my daughter as your own.

I remember the conferences you attended on your own time.  A conference we were invited to where we would learn more of our daughter's condition.  You wanted to come to learn for yourself, to better your understanding and to learn better how to care for our daughter.  You sacrificed time and for that we are grateful.  You loved her as your own, you cared for her with such compassion and pride.  Thank you for caring, for learning about our daughter, thank you for being her second mom and loving her with such devotion.

There were days when we did not know what was going on.  Doctor after doctor had been through and they just shrugged and said we don't know what to do.  You were there.  You held my hand, you wiped my tears.  We prayed together and you said it was going to be alright.  You were my strength when I had no strength left, you were my fight when I had no fight left.

One day as I sat to rock my child our nurse walked in with tears in her eyes.  She gently cradled Lydia in her eyes and cried.  I knew that she did not have to say anything.  Another angel gained wings.  It was a tough situation.  Lydia gave you comfort as you loved on her.  You sat there for hours crying and rocking my dear daughter.  Thank you for loving your patients as your own.

You rocked my child every night when you fed her.  You sang her lullabies and read to her.  You were ever so quiet, but I would half open one eye and joy would fill my heart.  You looked forward to her feedings so you could come and hold her, sing to her, and read to her.  You always placed a new colored picture about her bed or took a cute picture while she was sleeping.  You made her room feel like her nursery at home.  Thanks for helping me out when I was too tired, thanks for loving my daughter as your own.

You helped me make memories and pushed for things not done before.  Two months of being in the same hospital room is just too much.  You allowed us to take her for a walk and allowed her cousins to meet her at the same time as well.  What a special moment for all of us.  Your hand coordinated that and you knew how important that was.  I will always remember that, such a fun memory when everything else seemed so hard.  Thank you for helping our families make memories.

You never judged my child when she would growl at you, you never judged me when I was a crying mess.  You helped us get our child better so she could join her sisters at home.  You were patient with us and you helped us understand why things were happening as they were.  You were a special blessing to us and you loved our daughter as your own.  You always took the time to explain things to us and made us comfortable about her treatment.

You answer the phone with such confidence and listen to me as I pour out all of these insignificant issues Lydia is having.  I worry and I fret, but you don't.  You calm me and help me.  You listen and you encourage me.  The road is long and weary and without you on it, cheering me on, I am not sure where I would be.

You are a nurse.  You are more than just your career you are special.  I am not sure how you do it every day.  I am not sure how you can be just about everything to one family.  I am not sure how you can deprive yourself of so much to help someone else out.  God has put you on our path for a reason and we are so thankful.  If even for a moment, you have made an impact.  Thank you is never enough to show you how much it means for what you do. 

You were a second mom to my child, you saved her life, you were an important part of Lydia's care, you helped Ellen and Allison make it through this mountain experience, you made memories for our family and you are forever part of Lydia's journey.  You are our friend and you became our family.  We miss you and we are so blessed that you are our nurse.  You were more than just a nurse to Lydia, you healed our family.  Thank you!