Since we found our that Daniel has pulmonary hypertension, we have been collecting beads of courage. Daniel is wearing them in this picture I shared. He did that himself the day I got the beads out to take his picture with them. String by string he put them around his neck and then stood up!
Every bead that Daniel receives tells a story of some sort of medical procedure/experience that he has been through. In the words of this organization, "Each bead will be your way of saying. 'This may have been hard, but I DID IT!"
When we see Daniel's beads, we certainly are reminded of what a strong and courageous little boy that he is! But it is more than that for us. The beads are a very tangible representation of the faithfulness of our God. When you see that Daniel has over 1800 beads...over 1500 of these being pokes...and then you see the unceasing smile that this sweet boy wears, there is an undeniable answer to the thousands of prayers which have been said for him that we see everyday.
To see him now walking and toddling around our house, to see him getting in the mischief that all 2 year olds do, despite of have 21 beads that represent life threatening emergency situations, is a picture of God being our sustainer and strength. I do not think anyone expected Daniel to be thriving like he is today.
I look at 2 of the special hand made beads on his necklace and remember two very sweet and dear nurses that had taken care of Daniel. When they heard he was dying in January of 2012, they took beads off of their own necklaces to give to him.
Every poke, Every clinic visit, Every echo, every ICU admission, every emergency, every ambulance ride, every day on a ventilator, every hospital stay, every surgery, every dressing change, every PT, every ST, every medication challenge, every act of courage (although we could argue there are more!), every transfusion, every isolation contact precaution, every X-ray, every scan, every cardiac cath, every central line placement/removal, every tube insertion/removal, every special accomplishment, every trip to Denver, every discharge from thehospital...ALL represented on Daniel's beads of courage.
We used one of his nicknames on each string (except he has several strings of just black beads). Daniel was first. Then James his middle name. Then Jackson. Then LIttle. Then Buddy. Then Bubs. Then Bubba. Then Champ. Then D-Man. Then DJ. We have more to string and another name to add...
Sometimes they make me cry. It is just so much. And it has not been easy. At all.
To put this in perspective, our son Drew (who is now 11) had brain surgery when he was 19 months old. If Drew had collected beads of courage, he would would have collected about 20 beads. Daniel has over 1800. 1800
Always I am in awe of just how much sweet Daniel has been through and the faithfulness of Jesus as I watch the silly, happy go lucky, mischievous, HAPPY, smiley, awesome little boy he has become.
I hope we get to enjoy him for many years to come!
And so maybe the verse that we chose for the upcoming race...
"Be strong and courageous! Do not be terrified or dismayed, for the Lord your God is with you wherever you go." (Joshua 1:9)
...makes even more sense.
PH is an ugly disease. One without much hope. But 15 years ago, there was no flolan. Flolan is the life sustaining, quality of life improving IV medication that Daniel receives through his continuous central heart line. Without flolan we would have missed out on the last 18 months we have had with Daniel.
Will you please consider joining Daniel's Team by either donating or joining us on the 16th of September? So many of the people running or walking that day are doing it in memory of their loved one.
Maybe, just maybe God will allow them to find a miracle drug that will cure this awful disease.
Thank you, and words cannot express our gratitude for those of you who have been on your knees for our sweet Daniel. Each bead represents just what you have prayed him through. And I KNOW that your prayers have been answered in undeniable ways. Please don't give up on praying for him!
If you would like to read more about Beads of Courage, you can visit thee website at www.beadsofcourage.org
1 comment:
Daniel you are one brave little boy and Grandpa and I love you very much. Your smile delights my soul and for that I am very, very thankful. Love, Grandma Z
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