Adjusting to Home!

Dear loved ones,

First and foremost, I want you to know that GOD IS ANSWERING YOUR PRAYERS.  Don’t miss that for a moment!  We are so glad to say that after the care conference with all Tage’s doctors yesterday, we were encouraged that they see some great improvements in Tage over the last week.  He is gaining weight like a champ, his muscle tone is better, and he appears to be more alert and able to make better eye contact now than he ever has!  For that we are so, so grateful.  Since being home today, we’ve also noticed that he is able to stay awake MUCH longer than he ever has, too.

Not only have your prayers for Tage’s health been answered, but Josh and I do feel a sense of God’s presence and peace with us, so continue to pray for that, too.  We are just beginning to reflect on this past week now that we are home, and we know He is with us, though it was touch and go there for a while.  It has been without a doubt the hardest week of our lives — so many questions, so many doubts, so many showers where tears are streaming down our faces and our hands are pressed against the shower walls as we cry out to God and ask Him what He is doing and why us.  We never saw all of this coming, and it certainly is not the road we had imagined for our family.  God has placed this road in front of us, and we do not want to walk it.  I have pictured myself stepping out onto a dirt road that stretches on for miles and miles, unable to see the end, unable to see all the dark parts, the bumpy parts, the impossible parts, and the sunshiney parts, and I am afraid to start walking.  But all of your Bible verses have reminded us that we do not walk it alone.  The Lord himself goes before us; He walks beside us; and He guards our back…all at the time time…as only He can do.

So what now?  Tage and I will be going to many many doctors appointments over the next few months, and in about 8 weeks or so, we should have the genetic testing back.  That may or may not give us answers.  They think Tage has Leigh’s disease, and if that diagnosis is confirmed, we can treat it the best we can though there is no cure.  When we arrived at the hospital, they did not promise us WEEKS with Tage, but after seeing him progress in the hospital, the doctors don’t have nearly the sense of urgency they did when he was admitted.  For that, we are most grateful.  We are going to take whatever time the Lord gives us with our precious little boy, and we are going to focus on NOW.

We do want you to know that Tage’s body cannot handle sickness well, especially respiratory illness.  So, we will not be taking Tage to church nurseries, etc, and we will do what we can to protect him.  That means we are buying lots of hand sanitizer for our home and even some face masks as we enter flu season.  The doctors encouraged us to still live a full life, but just with some extra precautions.  So, we trust you will help us with both parts of that!

Thank you, thank you, thank you for your cards, your texts, your e-mails, your meals, your gifts, your time.  I wish we could write you all thank you notes!  It means the world to us that you care so much and that you don’t shy away from stepping into this messiness with us.  Your tears are soothing to us, because we know we don’t cry alone.

We don’t know how long this road will be, but your presence beside us is the greatest gift of all.

We also want to give our deepest thanks to the amazing team of neurologists, pulmonologists, pediatric developmental doctors, surgeons, nurses, and the complex care team at Riley Hospital who gave Tage such professional, speedy care, and who also were so compassionate to Josh and I as panicked and grieving parents.  We are forever in their corner.

We will continue to update you as needed, but for now we ask for continued prayer for our peace and trust and a sense of God’s presence.  We also continue to pray for a miracle in Tage’s body.  I was reminded of a woman we know whose brain stem was miraculously healed, and we’re asking God to do it again.

Love,
Molly, Josh, and Tage

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