one month old!

Mama guilt

Mama guilt.  

This phenomenon has been the absolute most difficult part of everything that is going on.  I think it would be there regardless of the circumstances surrounding the addition to our family, and I certainly had it even when I was mama to only one kid.  But in this current situation the guilt swallows me up frequently.  

If you are of the praying persuasion, this is something you can pray for.  I feel torn in half about caring for both my kids, especially because their needs seem so big amidst all this stress.  

This is the thing I keep working to release.  I am doing my best, that is all I can do.  I can not and will not get it right every time.  I'm learning that this is how it has to be, that it is ok to not get it right, to struggle with the balance of meeting multiple people's needs.  But it should not be something that drowns me in despair.  When I mess up or get is wrong, it doesn't mean I don't love my kids, and it doesn't mean they won't know that I love them.  

Good bye to mama guilt.  The task master I don't need and was not meant to have.  I will try each day to look toward God as my example of a parent and recognize that He doesn't want me to live under the weight of this guilt.

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11 days old - photo shoot

Thankfulness

From Jesus Calling:

November 24

Thankfulness takes the sting out of adversity. That is why I have instructed you to give thanks for everything. There is an element of mystery in this transaction: You give Me thanks (regardless of your feelings), and I give you Joy (regardless of your circumstances). This is a spiritual act of obedience—at times, blind obedience. To people who don’t know Me intimately, it can seem irrational and even impossible to thank Me for heartrending hardships. Nonetheless, those who obey Me in this way are invariably blessed, even though difficulties may remain.

Thankfulness opens your heart to My Presence and your mind to My thoughts. You may still be in the same place, with the same set of circumstances, but it is as if a light has been switched on, enabling you to see from My perspective. It is this Light of My Presence that removes the sting from adversity.

Always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.
—Ephesians 5:20

Give thanks to the Lord, for he is good; his love endures forever.
—Psalm 118:1

Blessed are those who have learned to acclaim you, who walk in the light of your presence, O Lord.
—Psalm 89:15


This devotional book has had a lot of impact on me lately. I'm not sure I've been able to be 'thankful' in our current circumstances, it feels more like a calm acceptance and willingness to walk this road set before me. I can say there's been moments of joy and a general sense of well being. I will say that we do feel covered in peace and carried in His arms during this difficult time. God has made sure His people are surrounding us and caring for us in many different ways, practically and otherwise. For this, I am so incredibly grateful. This road is one I could not walk alone.

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Cancelled

I had a post that got lost. Sigh. Here's the short version. God is certainly at work and orchestrating events for us. Tuesday was our meeting with the anesthetist to review if Elianna could have surgery successfully. That Doctor also happens to be a pediatric palliative care doctor. So, he was able to speak with us on a big picture level and give me a real sense of peace over our decisions for Elianna's care. Perhaps I will write more about that again later.
For now, we are postponing surgery because Elianna's breathing is potentially too weak. I'm following my gut on this, because I'm learning all the time that it has some value and I was really unsettled after meeting the surgeon.










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Surgery scheduled

So, today was a pre op appointment for E to schedule a surgery for the insertion of the GT (permanent feeding tube) tube. 

Tuesday is a meeting with anesthetist. We aren't sure if they will consider her fit for surgery but will have to see. We are hoping for a yes but would ask for wisdom in the person making that call.

Surgery will be this Thursday at 7:45am. 

Praying for peace and that E doesn't experience much pain. It is always a question with how much pain she is experiencing. It breaks their hearts not to know. 

From me,

I pray for my friends and try to imagine what it's like to love someone knowing they could be taken from you any second. 

We all face that question some days. But, it's much more real for my dear friends. 

And Milena, let's not forget about sweet, beautiful, amazing and brave Milena. 

May your prayers continue to carry her. 

Shalom 

Most know that the Hebrew word shalom is understood around the world to mean "peace." However, "peace" is only one small part of the meaning. "Shalom" is used to both greet people and to bid them farewell, and it means much more than "peace, hello or goodbye".... Hebrew words go beyond their spoken pronunciation. Each Hebrew word conveys feeling, intent and emotion. Shalom is more then just simply peace; it is a complete peace. It is a feeling of contentment, completeness, wholeness, well being and harmony. According to Strong's Concordance 7965 Shalom means completeness, wholeness, health, peace, welfare, safety soundness, tranquility, prosperity, perfectness, fullness, rest, harmony, the absence of agitation or discord. Shalom comes from the root verb shalom meaning to be complete, perfect and full. In modern Hebrew the obviously related word Shelemmeans to pay for, and Shulam means to be fully paid. Of course, there is only one way to find TRUE shalom - and that is in the Word of YHWH. Many search for fulfillment, happiness and contentment in material possessions, money, sex, entertainment, etc. But those things do nothing to fill "that little hole in our soul" that only GOD can fill! Those things only serve to distract and prevent us from finding true peace...the shalom that can only come from Him who created and put all things into place. If you'll recall, Yeshua is called Sar shalom, Prince of Peace, which perfectly describes the ministry and personality of our Messiah (Isaiah 9:6). Luke 2: 8. At this time shepherds were there in that region were they were lodging and keeping watch there at night over their flocks. 9. And behold a Messenger of Elohim came to them. And the glory of Master YHWH shone upon them and they feared with a great fear! 10. And the Messenger said to them, "Do not have fear, for behold I announce hope to you! A great joy which will be to the whole world. 11. For today is born to you in the city of Dawid the Savior who is Master YHWH, the Mashiyach.[1] 12. And this is a sign to you; you will find an infant who is wrapped in swaddling clothes and lying in a manger." 13. And at that instant the great host of heaven appeared with the Messenger, glorifying Elohim and saying, "Glory to Elohim in the highest, and on earth peace and good hope to the sons of men. (AENT) [1] One of the most powerful statements about YHWH and His Mashiyach in the entire Aramaic NT. YHWH is the real Mashiyach, who chose the vessel of Y'shua the man. However, within Y'shua the man is an occurrence of the One Divine Nature of YHWH, also known as the Ruach haKodesh (Holy Spirit). This is the literal meaning of the fullness of YHWH dwelling inside Mashiyach, and in accordance with Tanakh prophecy (Isaiah 53:1, Zechariah 12:10). The divine and human natures exist separately yet side-by-side within Y'shua. In other words, the word shalom is a mighty blessing on several levels! Proverbs 18:21 tells us there is life or death in the power of the tongue. Therefore, whenever you employ the word "shalom" you are speaking into someone's life all the wonderful things that shalom means! So, from us at The Refiner's Fire to you: Numbers 6:24-26: YHWH bless you and keep you. YHWH make His face shine upon you and be gracious to you. YHWH lift up His face upon you and give you SHALOM. In the name of Yeshua haMashiyach SAR SHALOM - the Prince of Peace. And take a look at these tidbits! Each of the 22 letters of the Hebrew alphabet has a special meaning and a story to tell. The Hebrew letters spelling the word "shalom" are Shin Lamed Vav Mem sofit. Taken together, and reading from right to left, they spell SHALOM. SHIN is the 21st letter of the Hebrew alphabet and it has a numerical value of 300. SHIN means TOOTH, YEAR, REPEAT, TEACH. SHIN makes the sound SHHHHHH when the DOT is on the right, and SSSS when the DOT is on he left. Shin is one of 7 letters which may be adorned with Tagin, or little crowns, in the Torah, Tefillin or Mezzuzah scroll. LAMED is the 12th letter of the Hebrew alphabet and has a numerical value of 30. Lamed makes a sound like the L in Like. Lamed means both TO LEARN and TO TEACH. The Lamed is the tallest and most majestic of all the letters. Since LAMED means LEARNING, it would seem that this would constitute a direct connection between LAMED, LEARNING and YHWH. VAV is the 6th letter, has a numerical value of 6, and is constructed of a single vertical line. Vav means HOOK and makes a sound like the V in Victory. When used as a vowel, Vav can sound like a long o or a long u. Translated it means AND. It is the GREAT CONNECTOR. Vav appears in the Four Letter name of YHWH our Elohim - Yud Hey Vav Hey. MEM is the 13th letter of the Hebrew alphabet and has a numerical value of 40. Mem makes a sound like the M in Middle. But according to the ancient kabbalistic text Sefer Yetzirah, the MEM hummmmmms! Mem is usually associated with the word mayim - WATER or Eemah - MOTHER. Mem is composed of a Caf (20) and a Vav (6) = 26, which have the same GEMATRIA as the Yud (10) Hey (5) Vav (6) Hey (5) = 26, name of God - the holiest of Name of God. The first word in Torah is Bereshit, meaning: A BEGINNING. If you divide Bereshit into bara and sheet, it means HE CREATED SIX (sheet is 6 in Aramaic) Six what? The 6 days in which creation was completed (Zohar 1:3b. 13)....

 

Hearing

Good news: Elianna had a more detailed hearing test last week. She was a compliant little subject and slept through it.
She has mild to moderate hearing loss, most of which they are attributing to fluid in her ears. So for now we will watch to make sure that infection doesn't set in and wait to see if it clears on it's own.



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Fog

November 16 from Jesus Calling

As you look at the day before you, you see a twisted, complicated path, with branches going off in all directions. You wonder how you can possibly find your way through that maze. Then you remember the One who is with you always, holding you by your right hand. You recall My promise to guide you with My counsel, and you begin to relax. As you look again at the path ahead, you notice that a peaceful fog has settled over it, obscuring your view. You can see only a few steps in front of you, so you turn your attention more fully to Me and begin to enjoy My Presence.

The fog is a protection for you, calling you back into the present moment. Although I inhabit all of space and time, you can communicate with Me only here and now. Someday the fog will no longer be necessary, for you will have learned to keep your focus on Me and on the path just ahead of you.

Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory.
—Psalm 73:23–24

Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
—1 Corinthians 13:12


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Another week

We've had a good week. She has a cold which has made things tough for a few days. She wasn't digesting her food. She did have a couple of rough days with breathing episodes but today was better again.

We are trying to get into a life of a new normal. 

We have two kids and run a business out of our home. It's a lot in the best of circumstances. 

We know you are all concerned and your questions come from a place of love but, answering the "how she's doing?" question is exhausting. We are trying to just live in a sort of normal assuming that she will be around. It is so hard to know if this rough day means anything or not, when we know there's been a serious or significant change we will let people know. 

Zellweger's Syndrome

Hi everyone,

Michael and Esther asked me to help keep the blog up to date at this time.








They have their hands full with two at home, running a business and then on top of all that waiting.








So, we will do our best to pray Gods will. And ask how we can be of help. And when we don't know what to say, say nothing at all.



On October 21st Elianna was discharged from Intermediary Care at womans to go home and be a family until they received the formal diagnoses and until she goes to be with Jesus.

There was a baby dedication that evening and close friends and family gathered around to support and love this amazing family.



That night she was taken off oxygen and it was thought that she would likely leave this world within 24 hrs. But, the truth is no one knows... no one.

That day they also received the results they had been waiting for. Elianna does in fact have Zellweger's Spectrum.


http://babyweston.weebly.com/zellweger-syndrome.html



http://corinnesophia.blogspot.ca/2011/12/what-is-zellweger-syndrome.html?m=1



That night another journey began.








She did not pass within that time and has been with us.

There is NO way of knowing how long that will be and there is NO way we can know what that might look like.







It has been wonderful to spend time, cuddling and bonding. But, it has been truly heart wrenching. They don't know for how long and in this time she has had seizures and the last couple days breathing issues called desats (where her blood oxygen levels fall and she loses her color).



Please know if they have not been in-touch or responded it is not personal. I know they appreciate SO MUCH all that people have done for them.

This time now is for them. To love one another and to be together.

So, we too wait and support when asked.








I will keep you posted once a week. Unless something changes.



God bless,

A loving Friend



And please read the links I posted about Zellweger's.