I miss you, my baby...

Enter his gates with thanksgiving

    and his courts with praise;

    give thanks to him and praise his name.

5 For the Lord is good and his love endures forever;

    his faithfulness continues through all generations. ~Psalm 100:4-5

 My Miracle boy, 

Josiah, my baby, my baby, I fought so hard to protect you from the moment you were born. I fought to bring you home, once you were home, I fought for help from all of your doctors; then we all fought for you. I fought and I fought.  Oh, how I wish I could just kiss your sweet face tonight, hold you tight, and watch you do your bunny dance. 

You were a joy and I wish I would have treasured more of you when I had you.  Tomorrow morning marks 1 month since I got to hold you and snuggle you. 1 month since you were here with us.  I miss you so very much.  Trusting the Lord doesn't remove the pain of losing my baby; trusting the Lord and leaning on HIM alone carries us through such unbearable times.  He gives strength to the weak and gives peace that surpasses all understanding.  His word is LIVING and I know it first hand.  I try to picture you, my baby JoJo playing and dancing with Jesus in paradise. I cannot but wonder how awesome it is up there.  I cannot wait to walk the streets of gold with you.  

I love you forever and always my boy, my baby, my Josiah.  I have loved you as much as a mommy could, but my love didn't stop on February 7, no not one bit. I love you more than ever today and always.  The pain is incredible, indescribable.  

God will heal the pain, I know and trust that HE will.  But it certainly is the hardest thing I have ever had to do.  I wish I was still fighting for you, my baby. But I'm so glad you don't need to fight anymore. You are no longer suffering and in pain.  I find my comfort in knowing you are with my LORD and Savior, Jesus Christ. 

For those of you wondering and too afraid to ask...Is it easier with him not here?...Well, it's complicated...Yes, I get to be a mama and wife again. I'm just a mama and wife now. I'm  No longer Josiah's doctor, nurse, therapist, researcher, life line, and a bed. I have the privilege to get up with my family every morning and make breakfast, lunch, and supper; plus two snacks everyday! I'm learning how to be a submissive wife and my marriage is blossoming. My children are enjoying having more time with there mama.  But I'm also struggling.  I was in the fast lane, for so long; slowing down has taken some time and the children are still learning how to have authority back over them and realize they do not need to be in survival mode any longer.  Life after losing him has been "easier" but it always has been so much harder.  Being just a mama and a wife takes a lot of patience and work. But I'm thankful that my Lord is showing me how I can be the best one I can be.  If I could have kept him, I still would have chosen the chaotic life we were living, I miss him. 

We were just starting to line up nursing care so that I could start being a wife and mama again; but God had other plans. God delivered my baby boy from so much more pain and suffering that would have been in his near future. MECP2 duplication is an awful disorder that just gets worse overtime.  Josiah is in a much better place and he is FREE from MECP2 duplication syndrome.  He is CURED forever!!!  

I love my baby so much and I have been changed forever by him.  His short time here has touched so many and continues to.  To God be the Glory!  Please pray that I continue to stay changed forever.  I do not want to take for granted the things we "get' to do.  Going to church on a regular basis, cleaning my own house, cooking for my family, and going grocery shopping!! These things are a norm in our culture, but it was taken away while I fought for my baby's life. And I fear that without my miracle boy, I could become complacent and not appreciate the privilege I have in my wifely and motherly duties!  Thank you God for all that you have given.  Blessings a plenty and still overflowing.  We serve a good God!!  "Glorify the Lord with me, let us exalt His name together." Psalm 34:3. 

I love you buddy, you will always be a part of our family,  and we will always love you!! 

Rambling thoughts...

I keep thinking it's February 7.  Anytime I think of what today's date is, my mind tells me,  February 7.  As if the world stopped when my baby boy, my miracle boy, took his last breath.  It's surreal.  I'm still waiting to wake up from this nightmare. I was asked yesterday for the first time since February 7, "how many children do you have?" I couldn't respond, I didn't know what to say! I broke down in tears and the eye doctor had no idea what to do, or say. And then I had to take an eye exam with tear filled eyes!! Not easy! Hey, maybe that's why my prescription changed?!?

Life has been different, very different, here, without Josiah.  I'm no longer a nurse, no longer Josiah's doctor, (maybe still Dr. mom to the rest of the kiddos), and no longer a therapist. I don't need to do g-tube cares, bowel regimens, urine straight cathing, TPN and Lipid mixing and change overs, iv meds; I'm no longer needed to do dressing changes on his hick-man line. I don't sleep in a rocking chair and hold my 2.5 year old all night long.  I no longer caress my miracle boy's hair and kiss his cheeks.  I no longer see his smily face every morning I wake up. I no longer am running to and from the hospital. Moreover, the exciting part of all that is, my miracle doesn't need any of that anymore! On February 7, 2015, my miracle boy, Josiah, "JoJo" went home to be with Jesus! And at 8:04 AM that Morning, my miracle boy, was finally cured from his MECP2 duplication syndrome!! He now can dance, sing, walk, run, and yes I believe (even though he doesn't need to) He is eating!!

I will never forget my miracle boy, I will never forget the last time I held my baby in my arms. The last time he hugged me, the last gasp from his body. Sometimes, I wish I could forget those last days; but than most other times, I feel blessed that I was able to hold him and be hugged by him for those last moments. Job 1:21 "The Lord gave and the Lord has taken away, "blessed be the name of the Lord."

As the time starts passing by, I pray that we can adjust to this new normal.  SuperDaddy is starting to get back into work mode. He has been in the office more and more these days. I'm sure his clients are thankful for that! My other three children are feeling the blessing of having their Mommy back and caring for them.  It's not easy. They have been in survival mode for quite some time.  All five of us are starting to adjust and SuperDaddy and I are laying down the ground rules to get some control back from these kiddos. I'm slowly seeing progress and I trust my Lord with every step of the way.

My hope is found is Jesus Christ. I know and believe Josiah's life was for good, not to harm us but to teach us and bless us beyond comprehension. Romans 8:28 "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."  I know and believe we are going to make it through this hard time in our lives.  Philippians 4:13 "I can do all things through Christ who gives me strength." Honestly, in a practical sense, life is easier. I'm not being 10 people at once. I'm simply a mother and a wife. And I look forward to being able to clean my house, cook for my family, do my own laundry, go grocery shopping and yes change my baby's diapers. I am so looking forward to not being at the hospital and clinic every day! I trust my God and I know he will carry us through the pain of losing our miracle boy. But that pain is very real and indescribable. I may just be a mother and a wife now. But I'm a mother and a wife that lost her precious miracle boy. Our worlds have been turned upside down and God will straighten up our lives in due time. I need to stay patient with myself, take time to grieve, and constantly focus on Christ. Acts 20: 24 "my only aim is to finish the race and complete the task the Lord Jesus has given me—the task of testifying to the good news of God’s grace."  God is a God of grace and Josiah's life is a testimony of that grace.  Thank you Lord for your goodness and grace!!

What is Pallitive Care?

Just a mere 3 days ago, I had virtually no idea what palliative care even meant and today I am incredibly thankful for such a "department of medicine" at the clinic. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illnesses.  Before our appointment this morning, I couldn't help but think that I had to choose the way the baby boy would die. Why do we have to choose?  What I found out today is that I don't have to choose.  You see, Josiah isn't going to die of de-hydration or liver failure; Josiah is dying of end complications of MECP2 Duplication syndrome.  Talking out everything with the palliative care doctor gave me such a peace about how Josiah's last days will be.  No matter what we decide as his parents and doctors, God has already chosen his path and has laid it before us.

 I'm still in shock.  I still humanly want to find a magical way to save my baby.  To keep him with me for as long as I can.  It shouldn't be this way.  I shouldn't have to bury my own baby. But like I said yesterday; Josiah doesn't belong to me. Josiah belongs to God and we have had the privilege of caring for our precious miracle boy for the last 21 months.  Only 10 months of the 21 months I've had the honor to be called his Mommy.  These last three years have changed me and I pray that Josiah's story goes viral and many could come to know the Lord through my little boy's life.  John 3:16 "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life."  I'm understanding the pain God felt when he gave Jesus, HIS Son, to the world as a gift for the punishment of all our sin.  God didn't have to send Jesus.  He didn't have to redeem us.  We deserve eternity in hell because of our sin, but GOD SO LOVED us that HE sent Jesus; to live a perfect life; to die on the cross; be buried; and rise from the grave to be in heaven forever.

Romans 6:23 "For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord."  This gift is free, we just have to be willing to accept it. God is good all the time.  All the time, God is good.

 My heart aches more than I ever thought it could.  How do we move on after Josiah goes home to Jesus?  My identity has become so apart of who Josiah is, I feel I could become lost without him.

 We not only our losing our son; we are losing a network of people that helped support, love, and care for our miracle boy.  Our therapists, doctors, nurses, special needs play groups, and my time investments. equipment, machine, and devices. We will lose the life we have been living for so long. But I'm glad that I don't have to find my identity in my miracle boy.

In reality, my identity is not found in Josiah's special needs but in fact, my Savior, Jesus Christ.

We may feel lost, but we are not. Deuteronomy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."  I find my comfort in the Lord even in the storms, when all the lights go out. I look to my savior for refuge. Proverbs 18:10 "The name of the LORD is a strong tower; the righteous man runs into it and is safe. 

We are cherishing these last moments we have with our miracle boy, Josiah.  I still cannot fathom how we are going to go through it.  I'm still waiting to wake up from this terrible nightmare and see everything is going to be ok.  But then my Lord gently and lovingly reminds me that Josiah deserves paradise, he deserves to be pain free.  In heaven , my miracle boy will be able to walk, talk, and eat.  What beauty there is in just that.  My God is good! Proverbs 3:5-6 "Trust in the LORD with all your heart And do not lean on your own understanding. In all your ways acknowledge Him, And He will make your paths straight."  



A friend has set up a funding page to help pay for Josiah's funeral and expenses.  Click Here is the link if you would like to donate or if you want to share with others.  Anything would be helpful.  We are not prepared financially.  We have been hit hard and have run out of time.