"For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well." Psalm 139: 13-14
This last week has been hard. So much information to take in. The heartache of hearing how short our sweet baby’s life is expected to be is almost crippling. Some moments I feel like I am suffocating, others I feel like we’ll be ok, we can get through this with the Lord’s help…
A friend called yesterday and during the course of our conversation she asked me if I was angry about Faith’s diagnosis. My only thoughts were: How would I possibly be angry? How could I be angry with the God who has given us the gift of her life? How can I be angry with the God who carries us through when the pain is simply too much to carry on our own? No, I am not angry. I feel shaken, sometimes maybe even broken, but never angry. The dreams we hold for each of our children never includes profound handicaps – but if the Lord sees fit to gift us with Faith’s life outside of the womb, we will embrace every aspect of the life He gives us with her.
I embrace my growing belly, and passionately love this fragile, tiny life growing within me. I embrace each and every day that she is with us.
My God is a God of miracles, and I KNOW that *if it is His will*, He can heal her. Totally. Completely. At the same time, I have to acknowledge that His plan for her may not include healing in this life. It may not come until she is in His arms, in His presence. I have to accept and embrace that as well.
Trisomy 18 has staggering implications. The medical outlook is very negative. Even more sadly to me is that it is estimated that 86% of babies diagnosed with this are aborted shortly after diagnosis. All of those lives cut short… It is unfathomable to me. And yet, before hearing this hard news about our sweet baby, it was also unfathomable to think of being faced with the reality of carrying a life that has so little chance, statistically speaking, of making it to a live birth.
I am shaken, but not broken. We still praise the Lord for her life, in whatever form He sees fit to give it. We thank Him for the strength to walk this road, because we are not strong. We do not have the strength to walk it ourselves. I feel so very weak. At times I feel helpless. There have been moments where I feel the enemy “whispering” that I should stop the twice daily shots that counteract my bleeding disorder, which help prevent my blood from clotting and suffocating our baby. To stop the progesterone cream that ensures my body has the necessary hormones to successfully carry our baby. I am old for a pregnant mom, at 41. But always, ALWAYS, I am reminded that I need to fight for this baby as I would any other. Her life is no less precious, no less special, with her condition(s). I choose to fight for her life, I choose to embrace this difficult journey. I choose life.
There are those who argue that a life like hers is not worth preserving. I’ve read medical reports and opinion papers published in the APA (American Pediatrics Assoc) online that argue that it isn’t right to prolong a life that is considered to be incompatible with life. My thought is, if my child is so “incompatible”, then why is she alive now? God knows far better than any of us could even begin to fathom. He has a plan. Quality of life is measured in so many different ways, depending on one’s perspective. If our child has very little chance of being “normal”, does that mean her life is less valid? No, it doesn’t. Not by a long shot.
The words of Job come back to me, as they have time and again when we have been faced with so many miscarriages over the years. “The Lord gives, and the Lord takes away. Blessed be the name of the Lord.” Yes, indeed. Blessed IS the name of the Lord, and we thank Him for being in control, for holding Faith’s fragile life in His great hands.
This morning, the children’s Sunday school song keeps running through my head – My God is so big, my God is so mighty, there’s nothing that He cannot do.
This is so true.
My God *is* so big, and He is SO mighty. He is the God of miracles, and her life in and of itself is a miracle.
I don’t know why we have been chosen by the Lord to walk this road. I don’t know what His purpose is in allowing such things to happen to our children. I don’t understand why such suffering must exist in this world. At the same time, I know that He doesn’t leave us to walk this road alone – and when we can’t see Him, it’s because we have closed our eyes or they are blinded by tears. When we cannot feel His presence walking with us, it’s because He is carrying us through. I know that He loves the little children even more than we do, even more than we can ever begin to comprehend. I know that He has a reason, and though I may never understand in this life what that reason is, we can rest in the knowledge that we don’t have to understand it to rest in it. To trust.
This last week has been hard. So much information to take in. The heartache of hearing how short our sweet baby's life is expected to be is almost crippling. Some moments I feel like I am suffocating, others I feel like we'll be ok, we can get through this with the Lord's help...
A friend called yesterday and during the course of our conversation, she asked me if I was angry about Faith's diagnosis. My only thoughts were: How could I possibly be angry? How could I be angry with the God who has given us the gift of her life? How can I be angry with the God who carries us through when the pain is simply too much to carry on our own? No, I am not angry. I feel shaken, sometimes maybe even broken, but never angry. The dreams we hold for each of our children never includes profound handicaps - but if the Lord sees fit to gift us with Faith's life outside of the womb, we will embrace every aspect of the life He gives us with her.
I embrace my growing belly, and passionately love this fragile, tiny life growing within me. I am thankful for each and every day that she is with us.
My God is a God of miracles, and I KNOW that *if it is in His will*, He can heal her. Totally. Completely.
At the same time, I have to acknowledge that His plan for her may not include healing in this life. Her healing may not come until she is in His arms, in His presence. I have to accept and embrace that as well.
Trisomy 18 has staggering implications. The medical outlook is very negative. Even more sadly, it is estimated that 86% of babies diagnosed with this are aborted shortly after. All of those lives, cut short. It is unfathomable to me. And yet, before hearing this hard news about our sweet baby, it was also unfathomable to think of being faced with the reality of carrying a life that has so little chance, statistically speaking, of living to a live birth.
I am shaken, but not broken. We still praise the Lord for her life, in whatever form He sees fit to give it. We thank Him for the strength to walk this road, because we are not strong, and we do not have the strength to walk it ourselves. I feel so very weak, at times I feel helpless. There have been moments where I feel the enemy whispering (not literally, but figuratively) that I should stop the shots and the progesterone cream. I have a bleeding disorder that requires me to inject a medical solution into my belly twice a day so that my blood doesn't clot and suffocate our babies when I am pregnant. I am old (for a pregnant mom) at 41, and progesterone levels are simply not what they once were when I was much younger and first starting our family. But always, always, I am reminded, I need to fight for this baby as I would any other. Her life is no less precious, no less special, with her condition(s). I choose to fight for her life, I choose to embrace this difficult journey. I choose life.
There are those who argue that a life like hers is not worth preserving. I've read medical reports and "opinion papers" published in the American Pediatrics Association (online) that argue that it isn't right to prolong a life that is "incompatible" with life. My only thought is, if my child is so "incompatible", then why is she alive now?? God knows far better than any of us could even begin to fathom. He has a plan. Quality of life is measured in so many different ways, depending on one's perspective. If our child has very little chance of being "normal", does that mean her life is less valid? No, it doesn't. Not by a long shot.
The words of Job come back to me, as they have time and again when we have been faced with so many miscarriages over the years - "The Lord gives, and the Lord takes away. Blessed be the name of the Lord." Yes, indeed. Blessed IS the name of the Lord, and we thank Him for being in control, for holding Faith's fragile life in His great hands.
This morning the children's Sunday school song keeps running through my head,
My God is so big,
My God is so mighty
There's nothing that He cannot do
This is so true.
My God *is* so big, and He is SO mighty. He is the God of miracles, and her life in and of itself is a miracle.
I don't know why we have been chosen by the Lord to walk this road. I don't know what His purpose is in allowing such things to happen to our children. I don't understand why such suffering must exist in this world. At the same time, I know that He doesn't leave us to walk this road alone - and when we can't see Him, it's because we have closed our eyes... when we can't feel His presence walking with us, it's because He is carrying us through... I know that He loves the little children even more than we do - even more than we can begin to comprehend. I know that He has a reason, and though I may never understand in this life what that reason is, we can rest in the knowledge that we don't have to understand it to rest in it. To trust.
Each day, as the morning sickness rolls through and I try to not get sick, and even when I find myself leaning over the sink, the contents of my stomach no longer where they were, I am thankful. Each time that is a reminder that her life is still growing within me. Each day that there are not the tell tale signs of impending miscarriage, I thank Him that she is still with us. It is day by day. It is hard, not knowing if she will survive to birth, if she will survive to the next trimester... if she will survive her first birthday, her first Christmas... how much time will we be allowed? We cannot know - only the Lord knows. All we can do is thank Him for each day that we do have, and embrace her life as it is right now.
I pray for a miracle for her life, but only if it is within God's will. How awesome would it be if He saw fit to heal her broken body? To heal her heart, to heal her abdominal issues, to put those organs back inside of her body and close that membrane sack that holds her insides on the outside of her tiny body... to heal any other health issues she may have that we don't know about yet? He can do it, but we don't know if He will. That may or may not be His plan. Because we can not know, we have to simply trust.
God is good. All of the time. He is gracious and loving. He is our Abba Father. He has a plan and a reason, and I am so thankful for that knowledge, even if it is so great that I can't quite comprehend it all.
Thank you, Lord, for our baby Faith. Thank you for her life, in whatever form You see fit to give it. Help us to walk this road, Lord, because we cannot walk it without You. Give us the strength and courage, the wisdom and discretion in making the choices You would have us make for her.
Thank you for those who are partnering with us in prayer on Faith's behalf. On behalf of our family. Where two or more are gathered together, You are there. Thank you for Your presence.