Today is Easter Sunday.
Sloane is 11 days old. Every day she has progressed so much and I am in awe of the miracle that she is. She represents so much that is bigger and better than the person I am. One of the good friends I have here wrote me a text the other day that made me totally lose it. She said her little boy learned in church last week that people that are not physically perfect here will be perfected in the resurrection, and then he made the connection with our baby and said, "Sloane Ball will be a perfect version of herself after the second resurrection, Mom. She's perfect on the inside now and will be perfect on the outside when Christ comes again." How is a mom supposed to hear something like that and not just weep? I believe that whole-heartedly; but it also makes my heart just hurt because I know that Sloane has so many earthly challenges and I just wish it was going to be an easier road.
That being said... I want to have that faith. Right now I am vacillating between being amazed by Sloane, scared of her trach, mourning the loss of the life I envisioned for my family, and the island I feel like I am on. I feel like I am lying if I don't disclose that with our handful of Instagram posts I've posted, I am not showing the anger I am feeling on and off about everything in my life. I am angry and I am sad. I see the miracles and I wish sometimes they were someone else's story that I could read, weep about and then move on with my life and go brush my hair.
Sometimes I feel like life has really beaten the crap out of my family for the last three years and honestly, I sometimes have a hard time of feeling extremely overwhelmed. I greatly miss my dad. and that loss is till so fresh. I wish I could call Eric's mom and ask her for advice and to straighten us both out... she always had a way to
make Eric stop and think, and make me consider my stance when we both would get too hot-headed or intense about a situation. I wish Eric's dad could be here to say some quiet, intense spiritual thing that would make me stop and think. But alas, life is freaking hard and we have to do most of this stuff blind and without 3 of our four parents. I've been thinking this a lot lately, but straight up: if someone had told me: "In the first 5 years of your marriage, you'll lose 3 of 4 parents, you'll move three states for work, you'll have a son by surprise and then not be able to have another child for 4 years and THEN when you FINALLY get pregnant, you'll find out your sweet baby has severe physical disabilities less than a week before she is born." I probably would have run away screaming. Good thing we can't see into the future. We have a million blessings though too and I can't let all those dark clouds chase away my sunshine.
This Easter, I am really grateful for a lot of things. One of the greatest being my belief system because that's what keeps me from completely losing it all together. The LDS faith has a large emphasis on family: and I love my family, and I am so SO grateful for my beautiful little miracle daughter. We waited SO long to be able to have a baby and I can't even put it into words how much I love her. I just also feel protective and nervous and and and and. Everyone that has joked in the past that I am a helicopter mom can just go ahead and keep joking because I thought I was fairly tame with Aiden (just not Idaho farm- mom style) but I can pretty much guarantee I will be a total psycho with Sloane.
This week, Sloane has made incredible progress. She has been weaned completely off her ventilator and is on only a trach collar (not expected and so we are thrilled. It will make our life sooooo much easier once we are home). She passed her hearing test with flying colors and will be able to hear completely with her headband bone conducting hearing aides. She is showing us her feisty personality, and she is completely unwilling to settle for anything less than what she wants, which I LOVE about her. She is sleeping well at night and is almost out of her withdrawal phase from the crazy drugs she has been on since birth. I am SO proud of her for fighting for everything with her life. This is when it's okay to be a parent.
Parenting is HARD and kind of awful sometimes, but also EXTREMELY rewarding. It's the best, worst, hardest, most rewarding emotional roller coaster I think we can experience in this life. Nothing can make you feel your emotions so raw as being a parent. Never have I loved so fiercely, wept so freely, or felt so MUCH everything.
I am working on making Aiden know a normal life now. We have pretty much lived in hospitals and chaos for the last year and I want him to experience some normalcy. He has been SO good all things considered but he is struggling in some big ways as well. It's concerning as a mom to know your sweet little boy is so little and trying to make sense of all the things he is observing and what his parents are telling him - and what he's overhearing from our conversations as adults amongst each other and friends. We have started some play therapy with him at the hospital sibling counselor which I think has been helpful. It's hard to balance life in the NICU and important mom and dad life with our toddler. I guess we can say at best our life is a work in progress.
Anyway, those are my personal musings for the day. Pray for us to figure out how to be normal people and not the hot mess family.
That being said... I want to have that faith. Right now I am vacillating between being amazed by Sloane, scared of her trach, mourning the loss of the life I envisioned for my family, and the island I feel like I am on. I feel like I am lying if I don't disclose that with our handful of Instagram posts I've posted, I am not showing the anger I am feeling on and off about everything in my life. I am angry and I am sad. I see the miracles and I wish sometimes they were someone else's story that I could read, weep about and then move on with my life and go brush my hair.
Sometimes I feel like life has really beaten the crap out of my family for the last three years and honestly, I sometimes have a hard time of feeling extremely overwhelmed. I greatly miss my dad. and that loss is till so fresh. I wish I could call Eric's mom and ask her for advice and to straighten us both out... she always had a way to
make Eric stop and think, and make me consider my stance when we both would get too hot-headed or intense about a situation. I wish Eric's dad could be here to say some quiet, intense spiritual thing that would make me stop and think. But alas, life is freaking hard and we have to do most of this stuff blind and without 3 of our four parents. I've been thinking this a lot lately, but straight up: if someone had told me: "In the first 5 years of your marriage, you'll lose 3 of 4 parents, you'll move three states for work, you'll have a son by surprise and then not be able to have another child for 4 years and THEN when you FINALLY get pregnant, you'll find out your sweet baby has severe physical disabilities less than a week before she is born." I probably would have run away screaming. Good thing we can't see into the future. We have a million blessings though too and I can't let all those dark clouds chase away my sunshine.
This Easter, I am really grateful for a lot of things. One of the greatest being my belief system because that's what keeps me from completely losing it all together. The LDS faith has a large emphasis on family: and I love my family, and I am so SO grateful for my beautiful little miracle daughter. We waited SO long to be able to have a baby and I can't even put it into words how much I love her. I just also feel protective and nervous and and and and. Everyone that has joked in the past that I am a helicopter mom can just go ahead and keep joking because I thought I was fairly tame with Aiden (just not Idaho farm- mom style) but I can pretty much guarantee I will be a total psycho with Sloane.
This week, Sloane has made incredible progress. She has been weaned completely off her ventilator and is on only a trach collar (not expected and so we are thrilled. It will make our life sooooo much easier once we are home). She passed her hearing test with flying colors and will be able to hear completely with her headband bone conducting hearing aides. She is showing us her feisty personality, and she is completely unwilling to settle for anything less than what she wants, which I LOVE about her. She is sleeping well at night and is almost out of her withdrawal phase from the crazy drugs she has been on since birth. I am SO proud of her for fighting for everything with her life. This is when it's okay to be a parent.Parenting is HARD and kind of awful sometimes, but also EXTREMELY rewarding. It's the best, worst, hardest, most rewarding emotional roller coaster I think we can experience in this life. Nothing can make you feel your emotions so raw as being a parent. Never have I loved so fiercely, wept so freely, or felt so MUCH everything.
I am working on making Aiden know a normal life now. We have pretty much lived in hospitals and chaos for the last year and I want him to experience some normalcy. He has been SO good all things considered but he is struggling in some big ways as well. It's concerning as a mom to know your sweet little boy is so little and trying to make sense of all the things he is observing and what his parents are telling him - and what he's overhearing from our conversations as adults amongst each other and friends. We have started some play therapy with him at the hospital sibling counselor which I think has been helpful. It's hard to balance life in the NICU and important mom and dad life with our toddler. I guess we can say at best our life is a work in progress.
Anyway, those are my personal musings for the day. Pray for us to figure out how to be normal people and not the hot mess family.
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