When Life Gives You Lemons....

What do you do when life gives you lemons.......  well you build a fort in your living room of course.  It seems lately that we have had more than a fair share of disappointments but my crew handles it like champs.  I am so proud of this little gang that I have been blessed with and so it stands to reason that they should be rewarded.  

There are few things that could be classified as more fun to a group little people than a giant fort in the living room.   Believe it or not, there was a time in my life when the thought of cleaning up this montrosity would have halted the  fun  and  the opportunity  for making a new memory.  I am so glad that I am no longer that stick in the mud. 

mean really, there's only so many times in your life when camping out on the hard floor in the living room beneath a countless amount of blankets sounds like fun.  So tonight we camp...... because it's a lot more fun that wallowing in disappointment!!!

I have to admit it that it turned out  to be an extremely awsome fort!

John 16:22

So also you have sorrow now, but I will see you again, and your hearts will rejoice, and no one will take your joy from you.                                      

Life With a NG Tube

Dawn hadn't finished making it's debut when somewhere out of the ten pairs of eyes peering my way came the question.... "Are you okay with him going home with a NG tube?"    This was a brand new place in life for me and I wasn't sure what to say, but then I heard the words "I will do whatever is best for Cohen", leave my mouth.  The room became a sea of nodding heads and voices that murmured in agreement, "We feel this is necessary for your baby to thrive properly".  

The next question that came through the crowd of white coats was, "Do you have any questions?"  Do I have any questions????   I looked around the room and suddenly I had immense compassion for the zoo animals that find themselves gawked at through cages on a daily basis.  Confusion raced through my mind... how did we end up at this place in life?  I gave birth to a beautiful healthy baby boy and now somehow we are in a hospital room surrounded by well intended individuals that appear to have as much concern over my child's well being as I do.  The long week in that small sterile room was beginning to take a toll on me and I was ready to get my family home. 

Just a boy and his pole!

It was pitch black outside and quickly approaching midnight when the headlights finally pulled into my driveway. As I opened the door the man handed me a large bag of supplies and an I.V. pole then he disappeared as quickly as he came.  I stood there in my living room staring at these foreign objects that were left in my care.  I opened the bag and began to fumble through the instruction for putting together this vaguely familiar equipment. It resembled the hospital machines that I spent day after day with... but this was different, now I am the one responsible for these beeps and buzzes.

When I reflect back on all of those faces and the questions that they posed I realize now.... that in all of my educational experience there was nothing that had prepared me for this part of our journey.  I have cared for the needs of four other little ones and thought that I had seen or experienced most everything.... until now.

I have been left to my own devices  for figuring out this new way of feeding my sweet boy.  Prior to leaving the hospital I was given a brief lesson on how to run the feeding pump but that was the extent of my tutorial on the matter.  I am teaching myself as we go and much to my surprise there is more to it than I had imagined.  I'm not sure what I thought it would be like... to be honest I couldn't see that far down the road at the time.

I am grateful for a wonderful on-line community of parents that are walking this very similar journey with us.  It has been through their direction that I have been able to learn how to care for my child and his feeding tube.  When we began this FPIES adventure I frequently saw the enduring term "tubies" used in reference to children with severe feeding issues, but there was a line of separation for me.  Feeding tubes happened to other unfortunate children with FPIES and I rested comfortably knowing that this would never be a reality for our little guy (those things happen to other people).  It was never on my child-rearing radar that I would find myself with the unique challenge of caring for my own little "tubie".  

I am learning something new every day about properly caring for Cohen and his tube.  With the help of some very experienced mothers I was able to learn a new way of taping his tube against his face.  Cohen has been wearing his "no-no's" since he left the hospital, my little opportunist would seize every chance he could to rip that plastic nuisance off his face.  Although, it broke my heart to keep him in those arm guards I knew that it was a necessity, the pain from ripping out his tube would be far greater than the discomfort of the restraints.

   

Last night was the first time in two weeks that my sweet little man was able to enjoy the freedom of sleeping without his "no-no"s"...   his mama finally learned how to properly tape the NG tube so that he can't pull it out.   My on-line research also opened my eyes to the possibility of allowing my little guy the ability to be mobile during his HOUR long feeds.  His new back-pack arrived today in a highly anticipated, much-like-a-Christmas package shipment excitement (seriously there were shouts of fanfare as the truck pulled up and a greeting committee of four little package ushers).  We are all a little excited at the opportunity for freedom that this gives our newly waddling toddler.

Not quite digging the back pack yet!

Apparently someone has been watching his
doctors and has learned a thing or two!

Finally, just as I am beginning to feel like I am getting a handle on all of this... the UPS shipments begin to roll in.  Big Brown has been quite the frequent visitor at our home lately.  Once again I am hit with a whole spectrum of emotions as the huge pile of supplies and equipment create a new realization for me.... turns out that we aren't exempt from this reality after all!

2 Corinthians 4:8-9  We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed.                                                                                  

http://www.feedingtubeawareness.org/index.htmlhttp://www.feedingtubeawareness.org/index.html

365 Days Old

I can't believe an entire year has passed since I held that sweet little guy in my arms for the first time.  I think all mothers must go through that same disbelief, wondering how so much time can pass without us realizing it. We get so busy with the day to day stuff that we forget that each of those minutes will pass by us virtually unnoticed.

I have learned so much this past year, things that I wish I wouldn't have had to add to my knowledge base.  I would have thought that after having four children I would have seen and experienced almost everything...and then I meet my little bullfrog!  I am a different person because of this sweet boy and his special needs...I am more compassionate, more understanding of what others are going through, and far more appreciative of the joy within me.  I am learning to embrace what makes him different because it is what makes him so special.  Someone asked me the other day, "how can you still be smiling after all that you are going through?"  My answer is the same for this situation as it is for all hard times that I face.... my strength doesn't not come from this earth therefore nothing from this earth will ever been strong enough to steal my joy!

Psalm 5:11 But let all who take refuge in you be glad; Spread your protection over them,    let them ever sing for joy.    that those who love your name may rejoice in you.

                                           My dear little man,

I feel so blessed to have been chosen to be your mother and  I am so grateful for the little things that your life teaches me daily.  You are such a special boy and  have so much strength for someone so little.  Thank you for the sweet ways that you show your love for me and for the smiles that you still manage to freely give after so much turmoil.  You are an amazingly resilient little man that has blessed this family with your presence.  I can't wait to see all of the extraordinary things that God has planned for your life.

Love you always and forever,

Mama

Things that you are doing~
*Speed crawling everywhere
*Taking many steps (but not yet taking off walking....although you could if you wanted too)
*You have a bashful little head tilt that you do when people talk to you (probably my favorite thing you do)
*Started saying Hi to people
*Wave Good-bye
*Say da-da and sometimes ma-ma
*Love to make clicking noises with your mouth
*Trying to repeat people
*Starting to not mind bath time
*You don't like to eat food but you pretend chew while others eat
*You love getting attention from your siblings
*You are finally able to eat bananas, pears and sweet potatoes (this is a BIG deal)
*You get your special formula through your NG tube (that you pulled out twice...so far)
*You have the most amazing little giggle
*You like to give Mama big slobbery kisses
*You love hearing your voice echo and making earth shaking screaming noises in public

~Cohen Facts~
Born on September 14, 2012 at 2:02 PM
Birth weight was 7 pounds and 3 ounces

You have Beautiful Brown Eyes

Have been diagnosed with Asthma and FPIES

Gained almost 2 pounds in two weeks after starting your NG tube

You have been in the hospital 6 times
You have a rare condition called FPIES and Asthma

Wear 12 month clothes

Size 3-4 shoes
You have 4 teeth on top and 2 1/2 on the bottom

You seem to have super human strength at times

You have the special ability to melt hearts everywhere you go

Happy First Birthday Sweet Little Man!

 John 16:21  When a woman is giving birth, she has sorrow because her hour has come, but when she has delivered the baby, she no longer remembers the anguish, for joy that a human being has been born into the world.

Cohen's Home!

Well what a week we have had..... Bruises and red marks linger all over my sweet little boy's beautiful skin from the countless attempts to take blood and place tubes.  It is no wonder that he wants to spend the bulk of his time in my arms...who can blame him!!

Cohen's was admitted to the Carillon Children's Hospital following his EGD and Flex Sig copes on Tuesday September 3.  It was a long morning, apparently necessary steps were not taken to get our insurance approval in order so we waited for hours until the office opened and approval was finally given...my poor tired hungry baby finally went into surgery four hours later than scheduled.  I have to say that watching them put him to sleep was on of the most difficult things that I ever had to witness.  The second hardest thing I had to do was to walk out with him still lying there on that table surrounded by strangers.

We were sent up to his room to wait for him during his surgery....it was a long two hours until I saw that sweet little face again.   Cohen's GI was pleased with the way his system looked so we began to devise a plan to get him eating some safe foods.  It is so difficult to know that your child's well being rest on the decisions that you must make.  Doctors give you advice and information but ultimately the decisions are left to the parents, what an immense weight that sits on our shoulders.

During our stay we had the opportunity to teach many health care professionals about FPIES and to learn more about how to manage our special boy's condition.  We made the difficult decision to bring Cohen home with a NG tube (a feeding tube that goes in his nose and into his stomach).  Our doctors felt this was the best way to help nourish him right now until we can find more safe foods for his little belly.


I am learning to embrace our situation and my son's exceptional needs.  I am treading in new water, learning to do things that parents shouldn't have to do.... but I won't let any of this steal  my joy.   "Devil Get Behind Me"  our words close to my heart right now.  I will fight for this family and this little boy, doing everything I possibly can to maintain joy in their sweet little lives.

I don't know how people could begin to get through difficult times with out calling on our maker, ultimately He is the one in control.  I know that my child belongs to Him and that He loves him more than I do (which is extremely hard to imagine).  I lean on the strength that comes form the one that holds me in His hands and comforts me when I need it most.

 I may not understand the trials of this world but I learn from them and I will always allow God to be glorified through them....

Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”

The Birthday Blues: Cohen's Update

This time last year I was preparing for the arrival of my sweet number five.  It was a rough ending to an already difficult pregnancy so I was more than excited for our due date.  I can't believe how fast time as gone by,  but what is even more unbelievable to me is what it has taken to get here.  My poor little guy has had a very rough start to his beautiful little life and it has been so difficult to watch him go through so much pain.

Before his FPIES diagnosis he had several hospital stays that were filled with needles, tubes, and countless tests.  I never dreamed that this little bundle of joy would experience so much discomfort in his first year of life.  We are so very thankful for the blessings that we can celebrate with him and that he is growing well despite what he has been through; but that doesn't take away some of this disappointments that come with his disease.

I have celebrated 4 first birthdays, all of them with so much excitement and of course that famous picture with little cake filled hands and icing mustaches.  There is just something about seeing babies tear into that first confectionery delight,  which seems to have become a type of  passage into toddler-hood.  I guess that's why I have so much sadness when I think about this special day.  I am only human and I can't help but find my mind often dwelling on the things that my little guy can't do...one of which is EAT...so obviously that means no cake diving baby pictures for our little scrap book!

I know that my sweet boy won't miss it....but his mama will!

You right!  It isn't the end of the world.... and yes I am very blessed to even have a little one to celebrate with, but just for a moment I need to be sad.... just for a moment I am going to let myself morn the loss of that image of a baby becoming a cake diving one year old.... just for a moment I am going to let myself be mad that my child doesn't live a "normal life".   

I really haven't been able to bring myself to think about that special day in detail, in fact I can feel myself become anxious when I think about it.  I am sure if my little man could talk he would tell me that the greatest gift I could give him right now would be to make him feel better.   So for now,  instead of planning a big day filled with festivities we are planning a hospital stay full of needles, tubes, tests and surgery.

I promise I won't let myself linger in this rut of sorrows or keep my focus on all of the negatives for to much longer.  Perhaps as early as tomorrow I will once again see the silver linings that hoover around me.... but for right now in this single moment...

I am sad

Mathew 11:28 

"Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest."

* Positive birthday post will come I promise...complete with our foodless cake idea!

A Decade plus 1

I lived many years before I figured out my purpose in life....and then one day I reached the place in my journey when everything finally made sense...  August 28, 2002 I became a mother.

I won't pretend that it has always been easy but I couldn't imagine my life any other way!  If you asked me eleven years ago what motherhood would be like I would have probably have given you a first time parents view of a uncertain world.

But my experiences thus far have taught me many things...
~ crying babies eventually stop crying,                                
                  ~ bruises don't always mean concussions,
               ~ teething eventually ends,    
   ~ children aren't perfect but your love for them should be
~ discipline may change behavior but discipleship changes hearts
        ~ not all kids sleep through the night,
~ children develop at their own rate....without regard to what the books say
~ little ones have minds of their own,
              ~ all children are gifted at something,
                                ~ your comparisons to others are never accurate
                                                        ~your children won't always like you...and vise verse
~ mistakes are always accompanied by apologies... this goes for the children too
~ children have no regard for TIME,                                ~ life looks a lot more beautiful through little eyes,
                                         ~ flexibility breads enjoy-ability
~ nothing replaces pleases and thank yous,                                   ~ little hands make mighty big messes,
                                              ~ just-a-minutes never take only one minute,
                                              ~ in a blink of an eye today will turn into yesterday
~ little hearts quickly grow regardless of how much love they are filled with... so we must not waste a single opportunity
  ~ Mommies and Daddies only get one chance to get it right!

But most importantly I have learned that I must cherish every moment that I am privileged enough to have with these beautiful blessing from above

Thank you sweet boy for challenging  me daily to be a better mother tomorrow then I was today.

                                             

   

Happy Birthday Todd Christopher

I love you to the moon and back again!

greatest-most-difficult-day-of-my-life

                       

James 1:17  Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change

Reflections of the Shadows

It is so easy to only focus my reflections on the peeks in my life, the times when all is well and life is easy.  It is far more enjoyable to pretend that nothing bad ever happens and that my road to the present has only been filled with smiles and giggles.  But if I don't take the time to record the valleys I will miss out on being able to fully appreciate those coveted peeks... the times when the sun shines brightly on my little world.

It isn't easy moving through these present days but I get to make a choice....either sercome to my circumstance or fight through giving the best of me to those that count on it most.

Recently, there have been many disappointments that I have had to accept but each one has helped me realize something... I have been trying to get through this alone.  After repetitively asking God to change the situation, it finally hit me....maybe it isn't the situation that needs to change....maybe it is ME.

I want to be the person that God has created me to be, but first I must remain fully surrendered to His will. What if this bump in my road is SUPPOSE to be here.... perhaps it isn't so much a challenge as it is an opportunity to mold me back into the shape I was intended to be.  This world has a way of chiseling away my heavenly shape and leaving me looking different than God had intended.  I will choose to feel the pain of being reshaped once again... so I won't miss out on what God has planned.

Now... I am praying for a change in ME and that I will have strength to take on each day no matter what it holds.  I hope that every shadow in my life brings me closer to God and that I embrace each as an opportunity to become the beautiful creation that HE envisioned when he breathed life into me.

"God meets you where you are but never leaves you there" Rev. Jack Graham

2 Corinthians 12:9-10 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.