{ONE}

It has been one year since Josh was born.  It is hard to believe.  I can't wrap my mind around it.  And what a year it has been for our family.  It began a year ago today with Josh's birth.  It was a crazy delivery & then the news that our baby had Down Syndrome.  Josh is very healthy for a child with Down Syndrome, but despite that, he had many doctor's appointments and procedures.  Then in July my husband was layed off from his job.  It was shocking but we looked at this as a time for change....good change.  Our biggest concern was health insurance for Josh.  My husband found a job after 7 weeks.  The day our new insurance started Joshua was in the emergency room.  He was later admitted with bacterial meningitis.  He had a 10 day stay in the hospital.  It was a scary time not knowing how this meningitis would affect him.  As I type this I have a 8ft deep hole in my front yard from my house to the sidewalk because of a water main break.  I thought this was the final straw...I couldn't take anymore.  I have tried from day one, a year ago today, to look at the positive to see the hand of the Lord in my life...despite the hard times.

So let's go back to my husband being layed off.  It was hard.....but we knew this was for the best.  He is now at a job and company he loves.  And they started him on the pay roll a few days before he actually started so that his benefits could start at the beginning of the month.  We don't see this as being "lucky" or a coincidence.  We see this as the Lord's hand in our lives.

The first day of September, the first day of new insurance, Joshua ended up in the emergency room.  He ended up being diagnosed a few days later with bacterial meningitis.  It was scary.  It was hard.  It was draining.  But through that all, I see several miracles.  First off, because of my education, I asked for a lumbar puncture to be done on my child, because I knew that he needed it.  I am so glad I asked...I am so glad I followed promptings to ask. 
I have always believed that working in a children's hospital, that I work on sacred ground.  There are so MANY things that happen at that hospital that are sacred: priesthood blessings, miracles, children are healed, some children may leave their mortal bodies there. I have seen all of these.  I have seen things and I have heard things and I have felt things that are sacred.  Although most days I go to work I don't think about these things.....it is just another day at work.
Having Joshua in the hospital I was again able to witness things: priesthood blessings, miracles, I felt sacred things and witnessed sacred things.  To say I was "lifted" by everyone's prayers is an understatement.  To say I was literally "lifted" by people's prayers, by angels, or by the gift of God, I don't know.  All I can tell you is, I was given strength in that hospital.  One night the second I stepped foot out of that hospital to go home, my body ached, I felted like I couldn't walk, the exhaustion set in. I was given strength when I was in the hospital, to be able to care for my son. 
I will never forget the blessing my husband and my dad gave Josh in the hospital.  We were scared.  But as soon as the blessing was over......I think we all felt what my dad said out loud, "He is going to be OK, he is going to be OK."  And from that moment on, I knew he was going to be OK, and that we had just witnessed a miracle.  It is impossible to describe the LOVE that I felt for this child as he was sick.  It was overwhelming.  It gave me a glimpse of the love our Father in Heaven has for each of us.
It is a miracle that Joshua came out of that hospital without any lasting complications.  Despite the toll that this hospital stay took on my body, my mind, my heart, our finances.....I know that God had his hand in our life and blessed us. 
So many people served our family during this time.  Meals and prayers.  Some from complete strangers.
Today as I watch out my window, I see my uncle taking care of a water main break in my front yard.  It is an answer to a prayer.  I knew that the problem was bad.....that it would be very costly.  But once again, I am indebted to someone who has come to our aid.  My Uncle had the resources to fix our leak out of the kindness of his heart and a fraction of the cost it would have cost.  Once again, we are blessed by those around us.
We have had to let go of a lot of pride this year.  We have had to allow others to help us, to serve us.  It is hard.  But we are not blind to the help we have received.  It doesn't go unnoticed. 
We have had a year of trials, but I hope that we have done our best to be thankful for what we do have, for what we have been blessed with, for the being able to see God's hand in our life, and for knowing that we were blessed.  Things could have gone so much worse in each of these trials that we faced this year.

I had the distinct impression when Josh was born, that although he was "mine", that he was not "mine".  He needed to be shared.  I would need to allow him to influence others.  I would need to sacrifice things, let some things go, in order for him to fulfill his mission here on earth.  I pray I can allow him to do that.  I pray that others will allow him to influence their life.
"There is no greater disability in society, than the inability to see a person as more." -Robert M. Hensel

It is hard to put into words the emotions that I am feeling today. One year ago today Josh came into our lives. The fact that he had Down Syndrome shocked us. It has changed our lives. It has changed me. I hope to think for the better. He has changed our family for the better. The amount of love I have for this child is hard to explain. I know he is here for a purpose & I am grateful he is mine. Because it gives me a window to see through that not everybody gets to look through. I have seen Josh touch people's lives already just by his sweet Spirit. He can teach us all how to love. Jesus taught the importance of loving others. One of my favorite quotes I have seen states, " these Spirits are special in God's eyes. They are sent to earth for their mortal bodies in such a way that they can't be tempted by this world.......try to understand {him} for {he} certainly holds hands with God. " I believe he certainly does.
How lucky am I ? How lucky am I.
Happy Birthday Joshie boy..I love you!

Love does not count chromosomes

As we are coming to an end of this month "of love".  I can't help but think of how we have been surrounded by love.  Not only has Joshua brought so much love into our home, but there are so many that love him.  He just has such a sweet spirit about him.  He is such a little love.  His siblings are always "loving" on him.  And Kennady and I are always "fighting" over who gets to hold him.  She calls him "her baby".  Joshua is well loved.

just like old friends

I feel like God has placed certain people in our lives for a reason.  Sometimes we know exactly why, other times we may never know why, and sometimes we don't find out why until years later. It has been interesting to see how already, at just the starting line of this journey, this has been so true.

I haven't seen or talked to a childhood friend of mine for probably 15 years.  I would hear how she was doing by common friends or neighbors, or my mom would show me a cute picture that this friend had posted on instagram.  Often I would think, I should really look her so I can keep up with her cute family.  But I never did.  Until the last few months of my pregnancy, I had feeling after feeling to look her up.  I finally did.  I loved her posts about her darling little boy with Down Syndrome.  I just thought he was the cutest.

I also knew of a girl from high school, who through social media, I was also able to watch in amazement at her cute family. She has been on quite the adventure. She has 6 children, 2 of whom have Down Syndrome.  I have been mesmerized by her posts as she documented her adoption story and her family's story in general.  There was one day she posted a picture of her with a group of mom's who have children with Down Syndrome as well. A little voice in my head told me that one day I will be apart of this group.  I pushed that thought deep, down and far away.  

So here I am, not even 3 months after Joshua was born, at a Down Syndrome mom's night out. I was so nervous to go. I didn't really know anyone, other than my friend I haven't seen in 15 years and someone I "knew of" in high school. But as I got to meet and talk to these amazing mothers, it felt like we were just old friends. I can't explain it other than there was a connection I felt with them. A bond. I knew these were people that were being placed in my life for a reason.  People who will truly know what I am and will be going through, people to guide me through this journey, people to lean on. A group of new friends, that instantly felt just like old friends.

She would die, if she knew I posted this picture! But I couldn't stop thinking about this picture, so I couldn't resist!! Who knew as little twins in 4th Grade, we would meet again so many years later, connected by having a child with Down Syndrome.  Paths cross for a reason.

And now I have all these ladies that already feel like old friends:

And without them I may have looked like this, just too scared to know how to tread the water.

Blessed

When we recognize the Lord has a hand in our everyday lives, then he can bless us. 

 This is a concept I have at times questioned, regained a testimony of, time passes, and I find myself wondering again if the Lord really does have a hand in my everyday life. I think we are easy to forget, easy to forget blessings, forget tender mercies, forget spiritual experiences we have had. We aren't so quick to remember. If we were quick to remember, I think we would doubt less.Part of the reason I wanted to start this blog, is because I felt myself slowly forgetting the strong impressions and feelings I have had with my pregnancy and birth of Joshua.  I knew if I didn't write things down, I would forget how strong the Spirit has been, how strong the impressions I had were, how strong the sense of comfort I was given.  I didn't want to forget......never again can I forget that yes, "the Lord is in the details of our lives."

The day we blessed Joshua, I wrote down the testimony I shared with those at church, in an effort to remember how full my heart was, how incredibly blessed I felt, to not forget. This is what I shared:
"I wish I could just stand here and you would all know the thoughts in my heart, because my heart is full, and I know I will not be able to adequately express the thoughts of my heart.

For those that don't know our sweet, new baby Joshua was born with Down Syndrome . And in his short 2 months with us he has already strengthened my testimony. Two things I have always struggled with are one, feeling like I don't have the ability to listen to and act on the whisperings of the Spirit. And second, that Heavenly Father has a hand in my daily life.

Joshua coming into my life has made me realize differently .

When I was in the early part of my pregnancy I knew something wasn't right . I asked Jeff to give me a blessing. After the blessing I knew something wasn't right, but Jeff didn't feel that way, so I tried to put the feelings aside. As the days grew closer to his birth, the promptings that not everything were normal with this baby were so strong, that there were days , that I was preparing myself that we may not be bringing home a baby at all.  I felt prompted to tell Jeff to be prepared that not everything was ok with our baby and that he needed to prepare himself. On the day Joshua was born, I got prompting after prompting to call the doctor because something wasn't right. I put it off over and over again, until  i was standing next to a plate on the wall and it fell off crashing to the ground into pieces. I think I literally said out loud. Ok ,I will call. I did call, and our baby was born a few hours later. They didn't give me enough time to get my husband or my mom to the hospital.

I tell you this because, I have learned that the spirit does speak to me, and yes, I do listen and act on the promptings. And also , Heavenly Father loves me enough to prepare me for the birth of a baby with special needs. He prepared me so well , that I was not shocked or sad to know that our baby had Down syndrome. Heavenly Father does love me and know me. The amount if peace and comfort I felt for weeks before and after Joshua's delivery were incredible, and a true gift from my Heavenly Father .

What an incredible spirit this little boy is. I can't begin to think what a wonderful spirit this child must have that he has a guaranteed ticket to the celestial kingdom. Amazing. He doesn't need to be tested. He has already proven himself. And I get to be his mother. What an amazing gift.

I want to thank Heavenly Father for the spirit this  little boy has already brought to our family. I will never forget the first time my kids came to see Joshua in the hospital. As we explained to our kids the special brother they now had, the spirit in the room was especially strong. And to think we will get to experience many more of these times. What a wonderful gift our family has been given .

I can only pray this child gets to serve in the way The Lord would have him serve.  I pray that you and I will allow him to teach us the things he was sent here to teach us. Because I strongly feel he is here not to teach my little family, but all of us.

I pray I can be a loving and deserving mother of this boy. "

I know some of this is a repeat to some of the things I have shared on this blog already, but I hope in some of the difficult times I may have ahead of me, that I will be quick to remember how incredibly blessed I am.

To learn more about my beliefs click the "i believe" button on the top right.

Climbing our Mountain

A popular blogger https://www.facebook.com/mitchellsjourney, recently described his journey with his son as Mount Everest.  This father's words resonated with me so strongly, that I have been unable to forget them. He stated,

"Life has so many mountains to climb. I would rather traverse the valleys and rolling hills with the summer breeze at my back. I would take up my abode by the gentle stream and beautiful lake and look upon Everest like a painting, admiring its majesty from the comfort of my rocking chair. But such was not my lot." "I can see the summit far in the distance. Basecamp, I can scarcely see below. The air is thin and bitter cold as storms circle about. This Everest is bewildering and its difficulty is matched only by its majesty. Many people don’t reach the summit; they retreat, lose their way or find easier paths that lead to lesser summits. Some never come back. 

While this hardship is daunting and I often worry I’m not prepared for such a journey, I have developed a spiritual connection with this Everest. I have learned it is not my enemy, but my teacher. It is merely an obstacle I must climb in order that I might grow. 

And on that fateful day when I reach the summit, where the air is thinnest and the stars barely out of reach, I know I will see far into the horizon … things that cannot be seen in valleys, or by gentle streams."

                                                                                                                    -Christopher M. Jones

Beautiful.  That is how I feel.  I feel I am not prepared or worthy of such a journey.  I feel if I look all the way to the top of the mountain that I may crumble and fall, because the task of scaling that mountain is just too hard.  But I too have "developed a spiritual connection" with this mountain and I know that "it is not my enemy but my teacher".  I know that I will forever be changed by climbing the mountain.  It will change me.  And if I do this right, it will change me for the better.  I am scared.  But I know when I reach the top, the view will bring me to my knees.  And I know I have a loving Heavenly Father, who wouldn't leave me to climb a mountain without the tools I need to get to the top.  I can't live in fear, I must live in faith.  I have my faith, my family, my friends and neighbors, but most of all I have a Savior and a Father in Heaven that will carry me along when I can't do it myself, if I but ask.

I have had so much love and support all ready.  I connected with childhood friends on social media before the baby was born that have children with DS, knowing in the back of my head that I would need there support soon. I have a loving neighbor with a DS child who came to visit me in the hospital.  I have so much support and for that I am blessed.

One comment stood out to me though, from an incredible mother with DS.  She said everyone is going to tell you how special a mom you are and how special a family you have to be given such a special child, but you don't have to believe it.  I was taken a back by this comment and wan't sure what to make of it.  Because I think the world of her family and her as a mother.  What I have come to understand is, that when people say that to her she feels inferior, like she should be extra special and handle every situation gracefully.  She feels she falls short. She feels that she is an ordinary mother, taking care of a child with more needs than most children and that it is hard work. But what she (or many moms with special needs children) don't see, is how we truly view them.  I see so many friends with special needs children and they are some of the strongest people I know.  I don't think they see their own strength or the people they have been molded into.  I will gladly have someone tell me that this special child of mine has been born into a wonderful family with a special mom.  Because if I am going to do this well, then I need to believe this.  I need to believe that somewhere hidden inside of me are traits and qualities that I have been given to raise this child.  Talents and qualities in me that I can find and develop.  Tools that will shape me into a mother capable of climbing my Everest.  I believe Heavenly Father would not leave me to climb Everest without the tools I need to get to the top.  And as I climb it will be hard and it will be rewarding and it will slowly shape me and my family into a special family.  A family worthy of such a gift as Joshua.  Will I feel like a failure, yes, sometimes I already do with my children. Will I make mistakes, absolutely, I am human.  Will I feel inadequate, always. But if I remember the eternal perspective of things, if I remember I have help, if I remember not to compare myself to others, I know I can do this. One small step at a time, after all, I have my whole life to reach the summit.

Count your blessings

The day after Thanksgiving we got our family pictures taken.  My heart was so full.  Not only am I blessed with such a beautiful family, but Joshua was able to be off oxygen, he was home and healthy. When the photographer showed me the preview of our pictures I was brought to tears.  I am not sure why, other than I am a lucky mom to have these children.

I have all I need.

Our days in the hospital

A mother should never have to walk out of the hospital doors without her baby.  It is so hard to leave your baby.  I don't think anyone can understand this unless you have been through it.  Your emotions are already heightened from just having a baby, you shouldn't have to worry about anything else than taking your baby home and cuddling them all day long.  We spent 8 days in the NICU, in my profession I see mothers spend weeks, months and up to a year with their child in the hospital. I don't know how they do it.  I was emotionally spent by the end of 8 days.  I had children at home to worry about as well as a child in the hospital.  I am blessed to have an incredible mother who did my laundry, grocery shopping, cleaned my house, took care of my kids......and neighbors who brought dinner and flowers and visited in the hospital.  We literally felt the love and prayers and support of everyone.  It made it so much easier to be able to spend time at the hospital with our baby.

Joshua spent a day on CPAP and then was able to move to a nasal cannula.  He had a heart ultrasound that showed he has an ASD, a small hole in his heart. Other than that Joshua is seemingly healthy.

The above picture brings tears to my eyes. It is a moment captured that I hope to never forget.  This was the first time our kids were able to meet our baby.  As we talked to them about how special Joshua is and some of the hardships he will face in his life, the Spirit in the room was so strong.  It was a feeling of peace and love.  I looked around and my kids and husband and was filled with an indescribable amount of love.  And the feeling I had been longing to feel....that my family was complete.  We were all here together, and we are blessed.  As I told my kids that Joshua didn't need to prove himself in this life, that he would automatically be able to return to live with Heavenly Father, my kids were in awe.  They thought that was so neat!  They don't grasp what is going to come with a Joshua as there brother.  But at this time, they don't need to.  They just love him.  They love him with all of their hearts.

We still did not have a name picked out for our baby. We knew it needed to be special.  A name that meant something.  The name Joshua was way down on the list of baby names I liked.  I tend to like "trendy" names.  My mom and Jeff were visiting Joshua while looking up meaning of some of the names on our long list.  Joshua means "God is Salvation". Meanwhile, I was up in my hospital room, praying that we might be able to come up with a name for this special baby.  A few minutes later Jeff and my mom walked in and told me what the meaning of Joshua was.  What a quick answer to a prayer.  We had spent 8 months trying to come up with a name! Joshua Warren Decker.  Warren is my father's name.  We tease him about his name sometimes, but I don't know anyone more deserving to have a grandchild named after them than my dad.  We had planned on having our babies middle name Warren all along, but having such a special child with my dad's name is even more meaningful.

I walked in to Joshua's room knowing I wouldn't be able to hold him because he was on bili lights. And I saw this gift sitting on the chair.  My heart sunk.  I started to cry. Reality check.  Your child has Down Syndrome.  It hit me like a ton of bricks.  It took my breath away.  Time to deal with this.  But later as I opened the booklet there were pictures of my childhood friends darling boy and a high school acquaintances 2 children with Down Syndrome as well.  Again came the feeling of peace and comfort knowing I have help and support from those that know firsthand the journey I am starting.

I remember the day we were given the chromosome test results.  My younger sister and my best friend were in the hospital visiting us. Our nurse informed us that the test results had come back and asked if we wanted the Nurse Practitioner to privately tell us the results.  I said "no, I already know the results".  These people I had with me are the people that will be helping me in this journey and I am glad they were there to hear, "your test results show your child has Down Syndrome."  I was fine.  Jeff was fine.  We were already at peace and already in love with this little child.

I am so grateful that my children were able to visit Joshua, as hard as it was trying to control children in the hospital, I think it is so important for them to be able to start to bond with the baby as well.  And they did.  They love him.

As I layed down with my 6year old after a long day at the hospital he showed me the picture he drew in school for Joshua.  It melted my heart.  "I love you Josh".  And then he sobbed. He didn't just cry.  He literally sobbed and sobbed.  He wanted his family home, all together.  He didn't want me to go to the hospital any more, he didn't want his baby brother in the hospital anymore, he wanted me home when he got home from school.  And I sobbed and sobbed. I wanted, no needed, my baby home and our family all together under one roof.

One good thing about being a NICU nurse is I knew the doctors.  They let me take this sweet boy home, knowing I was capable of taking care of him from home.  So after 8 long days, we were home all together.  Nothing felt better.  We were tired.  Emotionally, spiritually and physically tired. But we were home together as a family, and nothing is more important.