One Year Ago Today

One year ago today I heard the words that no parent wants to hear, the words that no parent should have to hear.  The doctors told me that my precious first born baby girl had what appeared to be the most severe form of Nemaline Myopathy possible.  As my angel struggled to breathe under the weight of her ever collapsing lungs, as the alarms sounded every time she lost oxygen saturation, as I watched the ventilator tear the tender skin under her tiny nose until every movement made her cry out in pain, I wept.  I wept as they told me that she would likely never reach one year old, I wept as they said even more clearly that she would probably never even leave that hospital, that we should Christen her as soon as possible to ensure she was blessed before she died. 

I wept at the thought of telling my mother that after losing her grandson and her son; that she would also lose her granddaughter; that I had failed at my first job as a mother…birthing a healthy baby.  I wept as I held my husband on the floor as he screamed out to our God begging him to save our baby; I wept holding my stepson on my lap telling him that the sibling he waited 9 years for was going to leave him. I wept at telling my husband’s ex-wife that now more than ever, we needed to work together for her son’s sake and I wept as she hugged me in total sympathy…the type of sympathy that only another mother can offer.

I wept as I weaned my breasts from providing the lifesaving nutrients they offered to my baby because I could not bear the thought of pumping to wean after her death. I wept every night in prayer as my stepson held God to his word; he said “God your Bible says you are a healer and that your children should ask and they shall receive.  I am your child and I am asking, please heal my sister.”  I wept that after weeks in the hospital, he never stopped praying and he again addressed the Lord saying… “I will not stop asking until you heal her, so just know, I am waiting” 

 There are countless scriptures that say some form of “and God heard my cry/prayer/supplication.”

 Well you all know this, but let me make it plain.  My God, the one and only true living God, God of all creation, of Heaven and Earth, God of the just and the unjust, MY Jesus, heard my cry and He heard your cry and He heard Charles’ cry and Charlie’s prayer and he DID heal my daughter and He blessed us with the care we need to KEEP her healthy.

 

 

[Psa 116:1-6 KJV] 1 I love the LORD, because he hath heard my voice [and] my supplications. 2 Because he hath inclined his ear unto me, therefore will I call upon [him] as long as I live. 3 The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow. 4 Then called I upon the name of the LORD; O LORD, I beseech thee, deliver my soul. 5 Gracious [is] the LORD, and righteous; yea, our God [is] merciful. 6 The LORD preserveth the simple: I was brought low, and he helped me.

 

 

Ariella still has Nemaline Myopathy but because of my God and because of the care He has placed in her life,  Ariella was home within three months being cared for by the best nursing team possible.  Not only did my baby leave the hospital but she did turn 1 in July, she started signing words in November and she started WALKING in December, she still is fed by a tube and still needs breathing treatments and suctioning of her lungs to keep them inflated but by GOD she is here and she is thriving.

 

The only words that will be declared over my children are God's Words. 

 

[Jer 1:5 KJV] 5 Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee, [and] I ordained thee a prophet unto the nations.

 

[[Jer 29:11 NLT] 11 For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.

 

[Jhn 10:10-11 KJV] 10 The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have [it] more abundantly. 11 I am the good shepherd: the good shepherd giveth his life for the sheep.

 

 

One year ago today I heard the words that no parent wants to hear, the words that no parent should have to hear, BUT THEY WERE WRONG!