I just love this image. It is how we, all those who love and believe for Eamon, see him.
I had a follow-up appointment with the geneticist this past week. Eamon has had many tests over the course of the year, all offering little hope of a diagnosis. During Eamon's surgery in June, they took a sample of his muscle with hopes of information. Information as to where we are, and where we might be going. A diagnosis offers a prognosis. The Dr. said the tests offered some good news. Eamon does not have an array of degenerative conditions - thank you Lord! But, a name still eludes them. All these tests and nothing, still.
We have decided to discontinue the search effort. Even this renowned geneticist believes it is futile. Here a brilliant Dr, gifted in unearthing rare genetic information does not see the profit in more testing. So where does that leave Eamon.
I have thought about this, over and over. And the answer is right where we began. In an unknown place, charting new waters, living and learning as we go, all the while fixing our eyes on the one who does know.
Eamon is known. He has a name - child of God, and therefore is a true prince. Eamon is fearfully and wonderfully made. God created his inmost being and knit Eamon together in my womb. All of Eamon's days were ordained before one of them came to be.
Eamon is a treasure, so rare that even the best and brightest can not identify him.
So here we are, with one less Dr. to see, ready for all that God has prepared in advance for Eamon's precious life.
I love that my Uncle Pat always asks, "What's the Good News?" So here goes:
- Eamon is laughing, consistently.
- Eamon is responding and reacting to all sorts of stimulation - people, toys, music, whatever - and it is pure satisfaction for the recipient.
- Social dynamics are emerging - where Eamon is learning the give and take of conversation.
- Eamon is vocalizing, trying out different vowel and consonant sounds.
- He is lifting his arms and legs while stretching and reaching.
- He is growing stronger, slowly -but we'll take it!
- And, even though Eamon does not fit into any specific "category" he fits perfectly here with us!
We are praying, always for healing, but especially for strength today. His O2 requirement has increased. I do well with visuals. So, if you are able to pray with us for our sweet little man, please see him like that strong, fearless lion at the top of the post. I can hardly wait to hear his roar!
5 comments:
Tracy...you continue to amaze me. Really. I am proud to know you, and proud to know how many times you have made me laugh. You were always the upbeat, positive force, even at the lunch table. Now, you are that way as a mom. Maeve, Miles and Eamon are so lucky to have you. And you them. May God bless you always.
Tracy WOW!!! Your blog never ceases to amaze me.The HOLY SPIRIT has anointed your ability to put HIS THOUGHTS DOWN IN WRITING. Everyone who reads your blog is blest and encouraged and touched by a living God who cares not only for Eamon but for all of us.THANK YOU TRACY for being obedient to GOD and writing what He is doing in Eamons life. Eamon is perfect in GODS EYES."AND SO I AM SURE THAT GOD, WHO BEGAN THIS GOOD WORK IN EAMON WILL CARRY IT ON UNTIL IT IS FINISHED ON THE DAY OF CHRIST JESUS." 1 Philippians verse 6 GOOD NEWS TRANSALATION Filled with HIS LOVE for you, David. Maeve, Myles and Eamon MIMI xxx ooo xxx ooo xxx ooo
I think Mimi said it best! I am blessed by this post. It encouraged my faith today! God is good ALL THE TIME! He never FAILS! I love you so much.
TC-You are amazing. A word that I think is over-used, but I paused for about 5 minutes and couldn't come up with a better one. The way you personalize scripture for your children (cuz I know you do it for M&M, too!) is such an inspiration to me. Praying God's word is powerful. Just look at the results...Eamon!
Thank you for the official update on him. I now can be more specific when I'm talking to God about him...and you!
On a side note: You should have seen Miss Maeve with the triplets today. Zoe was introducing 1/2 the class to the babies and Maeve was informing the other 1/2. You'd think she had birthed Ava herself! Such a proud "Cousin". She is a sweetheart through and through. You've raised a good one in her!
Well I guess we can conclude that Our little man has been diagnosed as "Perfect" the way our God had intended it to be. I find it to be a blessing that the Doctors cannot come up with a diagnosis;therefore Eamon is not placed in a catagory where we as human beings would expect certain things of him according to "our" knowledge, and then be discouraged if he did not perform according to "our" knowledge. Instead God has determined His own diagnosis and Special catagory for Eamon; One that always brings HOPE and NEVER discourages. one where we don't EXPECT but are EXCITED about the next miracle to happen no matter how Big or small. GOD is truly touching the hearts of us all, and to Him we are GRATEFUL.
Hugs and kisses to you all.
(hope my thoughts aren't to deep to understand it's way past this 40 year olds bedtime and the mind doen't work like it use to ....farwell and Goodnight for now................ZZZZZZZZZ.....ZZZZZZZZZ.ZZZZZZZZZ
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