Celebrating One week home!!!

It has taken me many days to get this post together.  Logistically time has not been the only barrier.  I have needed some time to process this past month.  I tend to be in medical mommy survival mode while at the hospital during surgery and then come home to process the days, and this time weeks  went by.   Last night I read this from another adoptive mother....

This was an excerpt as she sits in the hospital with her son....day 57.....

                      Many parents here (at the hospital) live in fear... exhausted, guilt-ridden, weary, frustrated, angry. It's heartbreaking. Many of them would likely not understand why we would ever choose this life. But that's not how we look at this. We chose this because we believe in hope and a God who offers that hope up free for the taking no matter how broken your heart is. We are thankful for this because this experience is a gift. Living out restoration, redemption, healing, love, and hope. Leaning on trust, prayer, faith, patience, commitment, family, and community. Witnessing the unexplainable. Watching a miracle. Mountains moved. Seeing God work right in front of your very eyes through your son, once an orphan and now so dearly loved by so many. We don't regret a single moment. Who wouldn't want to live a life like that? It's so easy to live a surface life. But the good stuff is deeper. We would do it all over again because our yes changed our son's life and it has changed ours. Maybe it even changed yours. Tonight, I'm going to sleep with praise on my lips.

This so summed up our hospital stay.  Yes, there were days that were longer than others and I worried  and nagged the Dr's and nurses a bit more about this or that symptom.   I call it advocacy for my orphaned child who now has a mama and Daddy.   My son, who most likely went through his first open heart surgery without proper pain management, deserved the best fighting chance we could give.  We advocated for him when he could not speak, by watching his furrowed eyebrows, and winching moans.  I spoke for him and demanded the best care because I owe it to his birth family to care for her child in this way.   There were days that I hurt for Joseph, because he had to endure so much in his little life.   But never did I lose hope that my child was in God's hands and His will would be accomplished.  Whatever it was!  I had prayed early on for God to use our time in the hospital to further His kingdom.  It started that first night waiting in the waiting room for our son to come out of surgery.  We met a family that will forever be our friends.  The story continued as God placed people who needed encouragement, from other heart parents who had been there, done that.  I praised God each time a PICU room became empty again and a little one went home.  We saw many people come and go.  It was easy to feel lonely as the floor turned over occupants as fast as the leaves were turning colors.  But we saw miracles performed, children healed, walking after heart, brain, traumatic injuries.  God was at work and we had a front row seat for 30 days.  Why would anyone choose to go through this with their own children?  Because every life is valuable and some of the biggest miracles are seen when our children are at their worst.  Not just the physical healing of our children (yes those are really big miracles too)  but the incredible miracles of faith being produced and grown at watching God at work.  Those are the miracles I love watching.  

The first few early days in PICU, watching your son intubated.  Waiting for his heart and body to heart.  Waiting in expectation of God's healing hand to work.   This is a lesson I learned many years ago from a faithful believer.  Praying for my child to be healed--completely.

 Ryan and I had talked with the children ahead of time about whether to bring them in to see Joseph in this state.  They were all so compassionate and natural about it.  Life lessons I wish they really did not need to know about so young, but lessons that bring so much meaning and depth to their lives.   Creating tender hearts in them.

 In the midst of this journey, this family became a strong support for us as they navigated their own medical trial with their daughter.  The children became great friends and had plenty of laughs together.  Surprisingly, we never we kicked out of any eating establishment!

 Meanwhile, Joseph continued to fight his fight!  Anytime he became conscious enough to get this thing off his face he was was going to go for it!  Only downfall was he was needed to breathe!  Rationalizing with him was not an option.

 I think his eyes were open in this picture.  It's just his face was so swollen.    And he's clutching his football signed by Ron Dayne.

 So wonderful once we we able to start holding him again.  Despite him being so uncomfortable with the chest tubes, it was nice to let him feel loved.

 The family visiting was by far the best medicine Joseph could have ever had during our stay.  He lit up when they arrived and loved the extra attention and snuggles from his girl.  Although the special visits came with the disappointment of them leaving for both of us :(

 This was Joseph's shirt he looked at for the last few weeks of his stay and the one he wore HOME!

                                                     Looking at his special cards!   His bed had many traumatic procedures and pain associated with it.  It became a depressing place for him.  Once he was able we tried to keep him out of his bed as much as possible.  Sometime he sat in his chair watching the cranes move the equipment to the top of the roof.  Thanks Local 139 for the entertainment!

                   Our first family dinner night downstairs was a relief to feel somewhat normal!

                    And entertainment with dinner!  Well he's entertainment most of the time!

                                             SMILES became more readily and he started to smooze the nurses......

Our Hospital buddies!

   The hospital has so many toys to make their stay fun.  Sometimes the other kids don't want to leave!

 How many times are you given the honor of allowing your child to fall asleep for surgery?  Looks like I might have been sniffing the good stuff too!  So thankful for the care we received at AFCH.

                                              FAMILY PHOTO  in the CAR!

                                         Catching a little fresh air!

The following are a collections of pictures taken by Joseph.  A self view of his hospital stay.  My first instinct was to delete all 600+ photos, but after looking at them it is a very reflective view of how he experienced the whole stay.  He loved to capture the nurses doing things and would video bandage changes, drawing blood.  I think it gave him a sense of control over what was happening to him.  If not, at least he had documentation of it!

 
                                          Some of his cardiac team on discharge day!

                                                               Halloween 2015

                       Despite not walking much of the way, his brothers helped fill his bucket with candy!

                                                                Princess Jessica

                                                              Captain America James

 Thank you to everyone who continues to pray and ask about our family.  We are adjusting back to normal life.  Joseph is seen about once a week and were working on getting him to eat more.  Thank you to those of you who walked beside us throughout this journey.  It truly would not have been possible without you!

TODAY IS ORPHAN SUNDAY!  What will you do differently?  Our family has sat in a hospital many times waiting for our children to return from surgery.  Some call us experienced at this.  Some maybe call us a little crazy! Why do we do this?   This phrase above says it all.  Our lives cannot go back to not knowing what we know.  We cannot go back to not caring, not acting, not living out the GOSPEL.  We know, we have seen, and have held orphans in our arms.    And God holds us accountable to ACT.