The amnio results came back this afternoon. (deep sigh) Samuel has full trisomy 13, not partial, not mosaic, not due to a translocation. This is the most severe form of Trisomy 13 as every cell in his little body has a third copy of the 13th chromosome. I felt almost robotic with my line of questioning and responses, writing down all key words that were handed to me over the phone so I wouldn’t forget any of the details when I called my husband after. The counselor even commented to me, ‘you seem like you are doing OK hearing this news’. My response to him- I feel like I’ve been preparing myself since the discovery of the enlarged fetal bladder in week 12. The perinatal specialist gave me a hand out in week 13 with statistics showing probabilities of chromosomal abnormalities with this type of thing found with the bladder. Also, my faith in God has been the primary reason to get me through this with some type of sanity. I know God has his reasons for giving me little Samuel with these types of complications and He will also have the sole decision when to take him home. The counselor said a lot of His faith-following patients respond in a similar way and he seemed satisfied with my answer.
I hung up the phone and I was back in my fog, the same way I felt last Tuesday after the very grim ultrasound results. I left work today seeing things around me but no real details. I just didn’t care. My body was numb, my thoughts consumed about little Samuel whether he is having any discomfort, does he feel his organs not functioning properly, can he sense his parents are deeply saddened by his prognosis to live.
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So sad to hear the news. Your faith in the face of this daunting challenge is admirable. I do think Samuel somehow knows that his parents love him deeply.
ReplyDeleteI still pray and hope he will live to full term so I can see my little nephew. But he is in God's hands now.
I am so very deeply touched by my thoughts of little Samuel. It is very, very rare to have a situation like this occur in our lives. From all of the "googling" I have done, it seems as though children with Trisomy 13 indeed have a purpose in life.
ReplyDeleteIt looks very likely that Samuel's "purpose" will not be self-serving. Rather it is likely, as in the case of myself (his great aunt), that I will be forever more sensitive to the extreme fleeting and fragile nature of life.
Samuel, you are a little angel and I feel privileged to know of you and you will forever be in my heart.
Josi, Dan, and Luke - your lives have been touched by an angel. I will pray that your family will embrace this experience and keep Samuel's light alive in your hearts.
I just love you guys and I love Samuel so very much. I grieve with you. I pray for you. I have hope for all of you. Hope that someday we will all be together.
ReplyDeleteI don't know how to express what is in my heart. The pain is great and the grief immense. Your steadfastness in the Lord encourages and strengthens me.
ReplyDeleteI look forward to the day (whether on this earth or in heaven) that we get see little Sammy running through the fields with his big brother Luke. For now I am working through being content with whatever the Lord has in store for us.
I treasure you and your heart.
I'm hanging in with you and am here for whatever you may need.