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Wednesday, May 8, 2013

Abe update

I know, I'm a terrible blogger.  Seems like 140 characters, quickly posting a pic or status seems much easier these days!  I did read through the blog not long ago and was quickly reminded of the incredible graciousness and faithfulness of the Lord.  I like having this journal and wanted to do an update on our precious little man.

I don't even know if I mentioned that he got really sick in December and this resulted in a swallow study.  The study revealed that Abe was aspirating both purees and liquids.  Not good.  He was then allowed nothing by mouth, all nutrition and hydration had to go through the feeding tube.  It was hard but everyone hoped that a repeat swallow study 6 months later would show improvement and he would once again be able to resume oral feedings.

Oral feedings are "normal" and when you have a child with severe special needs you like to have a few "normals".......so it was difficult to let it go.  Our repeat swallow study was yesterday.  I just knew it would show my boy was a swallowing king! It did.not.show.that....

He is indeed still aspirating solids and liquids, even his own saliva.  Bam.  It hurt.  I was not prepared for how sad it would make me.

Abe on the other hand is just fine with this!  He made it very clear during the study that he did not want any of it...... he can't communicate with words but he made it known that he is not interested in resuming oral feeds!  He pushed his tongue out, gagged and bit the spoon to prevent it from going in his mouth.  So the problem is me.  The loss of a "normal". The worry of him aspirating his own secretions.

I have some amazing friends and family that sent encouraging texts, let me cry on their shoulders and phone, reminded me of an awesome song (Oceans by Hillsong), brought me wine and cookie dough and a precious hubby that took me to a patio with a margarita.  We sat out there and cried together and quickly reminded one another what a gift this kid is to us, to others.

I'm thankful the Lord is faithful to encourage.  Faithful to reveal truth.  Faithful to remind me that He is God and I am not.  Faithful to provide the right scripture.  Last night He gave me Jeremiah 33:3.  "Call to me and I will answer you, and will tell you great and hidden things that you have not known."

He always answers prayers.  He does not always answer them the way we would like.  I do trust, rest in the knowledge that His ways are good.  That He loves Abe and knows his deepest needs.  So we keep pressing into Him and pressing on..........

My sweet friend Heather gave me this song, such rich truth.  Interesting enough, she sent me her journal entry for yesterday am.  Guess what scripture He gave her??? Yup, Jeremiah 33:3!  Our God is certainly in the details my friends. :)





"Oceans (Where Feet May Fail)"

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
[x6]

I will call upon Your Name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine




8 comments:

Andrea Young said...

First--I just have to say I'm sorry you got hard news...a loss of normal that you were hoping for. I have no words other than I'm sorry as I know a momma's heart--and I just love you as a sister in Christ...and I'm praying for that beautiful heart of yours. Second--I want to say you are RIGHT. The Lord has and IS using Abe in so many of our lives. But sister--He is using YOU too. You and Abe--together...make me a better mom, a better friend...and you know what...you encourage me and push me closer to the cross. You have no idea how the Lord has encouraged me through your life...and the lives of others near and far. Thank you for being real and for sharing your heart. It is absolutely beautiful. Love you!

The Stiffs said...

Emily, yesterday I took Jack to the doctor to have his eyes rechecked. All I wanted was clearance for water, baths, pool, beach... I felt like that was as much as I could ask for at this point. We didn't get it. He wounds aren't healing still too much risk of infection even for a real bath. As I was pouting, I saw Abe's picture. Soon I was grinning too. Your relationship with Abe is a wonderful example for me. You remind me to be thankful for what we have. Jack is not Abe, but I do know a little bit about the desire for normal. My heart broke for you yesterday. I hate those disappointments. Once again, you were the role model that I needed. Thank you. Still praying for peace.

We Are Family said...

Oh sweet friend. I feel your heart break. You are a strong mama. I will continue to pray. MANY blessings to you and yours <3

Becky - Adoption Ministry of YWAM Ethiopia said...

Emily,
I appreciate hearing this update and will continue to pray for you especially. You are a great example in your brokenness and honesty - God is using you! Give a hug to Gigi from me!
Fondly,
Becky

Whittaker Woman said...

Love you! H

"Are These Kids All Yours?" said...

Sorry for the news......

Sometimes having a special babe can be so hard, and yet obviously there are a billion blessings as well!

Kelli TenHaken said...

So sorry to hear your tough news. I can relate with your feelings; I fought Ruby's feeding tube so hard because, like you said, it felt like giving up the little normal that we had. Not fun to give those things up.

Thanks for your honesty! It is encouraging. Hugs from MI.

Anonymous said...

Praying for your family. Hope you update soon. Found you on Wright family usa blog


Sarah

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"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from becoming polluted by the world." James 1:27
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