Look at these precious cheeks!
We're now up to 12 ultrasounds of this sweet baby! Today we got to see a head full of hair! :) We went to the specialist again & it seems that at this point our biggest decision is where to deliver. I meet with a pediatrician tomorrow & another one next week as well as my ob so hopefully we'll have all the information we need to make a decision within the next 2 weeks about where to deliver. Today is a "numb" day I guess. Some days are good, others are bad & some are just numb. It's hard to go to dr appointments anymore - they aren't fun- they're scary. We don't sleep well at all, we spend time praying for no more scary surprises as we head to the office & we really miss just being "normal" pregnant. It's hard to be joyful when you are dealing with such tough issues. We are blessed to really like the specialist in Odessa & also his genetic counselor. We spent time with each of them today. The genetic counselor made a great point that she is frustrated that they can't answer all of our "mom & dad" parenting questions. They can give us medical information but the basic parenting questions are more difficult- because they just don't know & this is really rare. That's frustrating for us too, of course. I think we always go into these appointments hoping that today will be the day of miracles- the day they realize they've been wrong all along. It's hard to hear that they aren't wrong. They aren't sure there are feet at all anymore. (Several weeks ago, they believed there were little half feet.) That has been hard to deal with. No new mommy or daddy imagines not having toes to count. They do think there may be wrist bones so that is good -we are praying that the wrists have movement.
I had a lot of time in an airport yesterday as my flight was delayed & so I did a lot of thinking. I also couldn't sleep so I thought some more throughout the night. So I thought I'd share some of my ponderings...
* I'm reading a good book on dealing with loss & finding grace. (It's titled, A Grace Disguised.) It deals with all kinds of loss- death, chronic unemployment, disability, & loss of dreams for new parents when their child is diagnosed with something they weren't expecting. One of the things I really liked was that the author mentioned that you can't quantify loss. You can't compare one person's loss to another's. It's easy sometimes to think that this would be "worse if..." or "easier if...". We want to rank our losses. I like that he says just mourn & grieve where you are at. It allows the loss you are experiencing to truly be validated & not minimized. We are experiencing some losses- loss of dreams for our child, loss of innocense & joy in pregnancy, loss of expectations in delivery, etc.
* I recently read a book recommended by someone to me entitled, The Elephant in the Playroom. It's a wonderful collection of short essays by parents of special needs kids. While it typically dealt with mental rather than physical issues, many of the fears & struggles are the same. We all want the best for our kids & we all want to protect them from cruelty. We want them to be able to experience life to the fullest and fear they won't be able to. One of the parents in the book mentioned that her child does not have a "disability." Rather, he has "possibilities." I like that. I want to claim that for my baby.
* Some people have criticized us for praying for a miracle because they are afraid that if God doesn't give us what we are asking for that we will then experience bitterness at God. Honestly, God knows our hearts- whether or not we ask Him for a miracle, He knows we want one. It would simply be dishonest of us to pretend that we don't. Furthermore, I am a firm believer in asking God specifically for things. I believe it is biblical. Jesus asked to be spared the cross. Others asked for healing. Do I realize and accept that He may not answer my prayer for a miracle? Yes. Will I be bitter or resent that He didn't answer my prayer as I hoped? I don't know. Can He handle my honest feelings & help me work through it? Absolutely. That is why I love David (the Psalmist) so much! Aren't we so blessed to serve a God who wants our honesty & can deal with our honesty. It makes for a much more secure relationship, don't you think? After begging God for the life of our first baby & subsequently losing that baby, I felt like God had hurt my feelings. It wasn't that I was angry so much as just really hurt that He didn't allow that life to continue. But I found great comfort in Psalm 13 - David also struggled with God but He didn't turn from God. He questioned what God was doing but He continued to talk to God. And, ultimately, He praised God. I praise Him that I was allowed to carry that precious life as long as I was. I miss baby Paul & I don't understand why I can't hold him now but I am grateful for the joy I experienced in carrying him and for the hope in knowing I will hold him in heaven someday. If Reagan was struck with cancer, you can bet I would be on my knees begging God for his life. Who wouldn't ask specifically for a miracle for a loved one? I think this is no different. So, in response to whether or not we should pray for miracles, we say yes, please pray with us for miracles. We do accept that God may not give us miracles in the way we are asking & that is okay. We will deal with that & we will continue to trust Him with the life of our baby. We will continue to celebrate the life of our baby, whether or not there are hands and feet. We will continue to claim that ANY new life is a miracle - regardless of how it is formed! But we're not going to stop praying for this baby just because God may not answer our prayers as we think we would like. (Notice I said "think" - we don't know what great things & blessings He may have in store which we could miss if we weren't experiencing this. But, in our humanness & blindness to the future, we're going to ask for a miracle.)
*I've seen a really amazing side of Reagan - his daddy side. I think it has come about earlier for him then for most men who don't experience "daddiness" until the birth of their child. When all of this began, Reagan begged God to take his hands & feet instead of our baby's. Honestly, that didn't cross my mind. My maternal side of simply wanting to nurture & love this baby kicked in but for Reagan, his protective instincts and his desire to fix pain for his child were incredible! I am so in love with this precious man & am thankful I get to partner with him in this experience.
* People have continued to love on us - you have no idea how timely many of your notes or cards or phone calls are. Thanks for keeping us in your prayers.
We received a fun package today of restaurant gift cards from our old Sunday school class to be used while we are in Dallas or on rough dr days (like today) when we just don't feel like cooking or eating. Thanks for your thoughtful, creative gift!
*Someone has anonymously had an attorney establish a "special needs" trust for our child. WOW! We've known about this for a few weeks & have felt so completely overwhelmed we've just kind of been speechless. Whoever you are, I promise I'll get a thank you note to you soon. I keep trying to write one but I am so overwhelmed I don't even know where to start. How can you adequately thank someone for loving you so much to think about your financial needs as young parents with a big medical future ahead of you??? The trust has been established so that others could donate as well & it will help offset some of the future financial burden we are bound to incur. Obviously, dealing with this sudden development has been a huge financial burden. Most of the burden is with the unknown of the future - the what ifs- & trying to figure out how best to plan for those what ifs. Thank you for thinking ahead for us. Thank you for using your financial wisdom to help guide us as we are young & inexperienced & scared. Thank you for loving our baby & us.
We're now up to 12 ultrasounds of this sweet baby! Today we got to see a head full of hair! :) We went to the specialist again & it seems that at this point our biggest decision is where to deliver. I meet with a pediatrician tomorrow & another one next week as well as my ob so hopefully we'll have all the information we need to make a decision within the next 2 weeks about where to deliver. Today is a "numb" day I guess. Some days are good, others are bad & some are just numb. It's hard to go to dr appointments anymore - they aren't fun- they're scary. We don't sleep well at all, we spend time praying for no more scary surprises as we head to the office & we really miss just being "normal" pregnant. It's hard to be joyful when you are dealing with such tough issues. We are blessed to really like the specialist in Odessa & also his genetic counselor. We spent time with each of them today. The genetic counselor made a great point that she is frustrated that they can't answer all of our "mom & dad" parenting questions. They can give us medical information but the basic parenting questions are more difficult- because they just don't know & this is really rare. That's frustrating for us too, of course. I think we always go into these appointments hoping that today will be the day of miracles- the day they realize they've been wrong all along. It's hard to hear that they aren't wrong. They aren't sure there are feet at all anymore. (Several weeks ago, they believed there were little half feet.) That has been hard to deal with. No new mommy or daddy imagines not having toes to count. They do think there may be wrist bones so that is good -we are praying that the wrists have movement.
I had a lot of time in an airport yesterday as my flight was delayed & so I did a lot of thinking. I also couldn't sleep so I thought some more throughout the night. So I thought I'd share some of my ponderings...
* I'm reading a good book on dealing with loss & finding grace. (It's titled, A Grace Disguised.) It deals with all kinds of loss- death, chronic unemployment, disability, & loss of dreams for new parents when their child is diagnosed with something they weren't expecting. One of the things I really liked was that the author mentioned that you can't quantify loss. You can't compare one person's loss to another's. It's easy sometimes to think that this would be "worse if..." or "easier if...". We want to rank our losses. I like that he says just mourn & grieve where you are at. It allows the loss you are experiencing to truly be validated & not minimized. We are experiencing some losses- loss of dreams for our child, loss of innocense & joy in pregnancy, loss of expectations in delivery, etc.
* I recently read a book recommended by someone to me entitled, The Elephant in the Playroom. It's a wonderful collection of short essays by parents of special needs kids. While it typically dealt with mental rather than physical issues, many of the fears & struggles are the same. We all want the best for our kids & we all want to protect them from cruelty. We want them to be able to experience life to the fullest and fear they won't be able to. One of the parents in the book mentioned that her child does not have a "disability." Rather, he has "possibilities." I like that. I want to claim that for my baby.
* Some people have criticized us for praying for a miracle because they are afraid that if God doesn't give us what we are asking for that we will then experience bitterness at God. Honestly, God knows our hearts- whether or not we ask Him for a miracle, He knows we want one. It would simply be dishonest of us to pretend that we don't. Furthermore, I am a firm believer in asking God specifically for things. I believe it is biblical. Jesus asked to be spared the cross. Others asked for healing. Do I realize and accept that He may not answer my prayer for a miracle? Yes. Will I be bitter or resent that He didn't answer my prayer as I hoped? I don't know. Can He handle my honest feelings & help me work through it? Absolutely. That is why I love David (the Psalmist) so much! Aren't we so blessed to serve a God who wants our honesty & can deal with our honesty. It makes for a much more secure relationship, don't you think? After begging God for the life of our first baby & subsequently losing that baby, I felt like God had hurt my feelings. It wasn't that I was angry so much as just really hurt that He didn't allow that life to continue. But I found great comfort in Psalm 13 - David also struggled with God but He didn't turn from God. He questioned what God was doing but He continued to talk to God. And, ultimately, He praised God. I praise Him that I was allowed to carry that precious life as long as I was. I miss baby Paul & I don't understand why I can't hold him now but I am grateful for the joy I experienced in carrying him and for the hope in knowing I will hold him in heaven someday. If Reagan was struck with cancer, you can bet I would be on my knees begging God for his life. Who wouldn't ask specifically for a miracle for a loved one? I think this is no different. So, in response to whether or not we should pray for miracles, we say yes, please pray with us for miracles. We do accept that God may not give us miracles in the way we are asking & that is okay. We will deal with that & we will continue to trust Him with the life of our baby. We will continue to celebrate the life of our baby, whether or not there are hands and feet. We will continue to claim that ANY new life is a miracle - regardless of how it is formed! But we're not going to stop praying for this baby just because God may not answer our prayers as we think we would like. (Notice I said "think" - we don't know what great things & blessings He may have in store which we could miss if we weren't experiencing this. But, in our humanness & blindness to the future, we're going to ask for a miracle.)
*I've seen a really amazing side of Reagan - his daddy side. I think it has come about earlier for him then for most men who don't experience "daddiness" until the birth of their child. When all of this began, Reagan begged God to take his hands & feet instead of our baby's. Honestly, that didn't cross my mind. My maternal side of simply wanting to nurture & love this baby kicked in but for Reagan, his protective instincts and his desire to fix pain for his child were incredible! I am so in love with this precious man & am thankful I get to partner with him in this experience.
* People have continued to love on us - you have no idea how timely many of your notes or cards or phone calls are. Thanks for keeping us in your prayers.
We received a fun package today of restaurant gift cards from our old Sunday school class to be used while we are in Dallas or on rough dr days (like today) when we just don't feel like cooking or eating. Thanks for your thoughtful, creative gift!
*Someone has anonymously had an attorney establish a "special needs" trust for our child. WOW! We've known about this for a few weeks & have felt so completely overwhelmed we've just kind of been speechless. Whoever you are, I promise I'll get a thank you note to you soon. I keep trying to write one but I am so overwhelmed I don't even know where to start. How can you adequately thank someone for loving you so much to think about your financial needs as young parents with a big medical future ahead of you??? The trust has been established so that others could donate as well & it will help offset some of the future financial burden we are bound to incur. Obviously, dealing with this sudden development has been a huge financial burden. Most of the burden is with the unknown of the future - the what ifs- & trying to figure out how best to plan for those what ifs. Thank you for thinking ahead for us. Thank you for using your financial wisdom to help guide us as we are young & inexperienced & scared. Thank you for loving our baby & us.
10 thoughts:
Katie, I'm sure you don't remember me, but we have met, a time or two, and know Shirley and Clark well. Our two girls know Reagan, too. I just wanted to say, what you have written is just beautiful, and so inspiring. You are mature, well beyond your years. I too, believe in asking for miracles, and have eight of my prayer warriors praying for this precious little one, right along with me....you take care, and I have to say, this is one LUCKY child to have you and Reagan as parents.
Love, to you ALL,
Becky Peterson
Jerry and I are in the Thomas Dept. and in your parents class. My heart really goes out to you. Yes, I believe in miracles, as God has given us several in the life of our twin grandson who has 1/2 a heart and has had 5 open heart surgeries. He is now 4 years old and really doing great. Someday he will have to have a heart transplant. We still pray for miracles on his behalf.
As a prayer warrior, I know that we don't ever want to limit God in what he can do, therefore we will pray for miracles. The more people that pray, and pray often, He will hear and have compassion and grace upon you and your little one.
I pray that all of you will be in
God's constant care and we know that God will be given the praise and glory for what He will do.
In God's Love,
Loretta & Jerry
Thanks for keeping us updated Katie...it definitely lets us know how to pray for you all. I believe in miracles, and I prayed for that this morning! Regardless it is inspiring and such a testimony of who you are in Christ that 'no matter what' you will trust in our Father. We love you--F, E, and Baby W :)
I see that my mother has beat me in posting... I am the mother of the child with "half a heart" that she was referencing to in her post.
I feel like I have walked a little in your shoes. I know first hand what it is like to go to the many doctor appointments and be given grave diagnoses. I know what it is like to put your faith in God and then crumble at the same time. I know what it is like to have HIM hold you and feel his touch like none other. We were given a 50% chance that our little Colby would make it to birth, and then another 60% chance that he would survive his first open heart surgery, at 4 1/2 pounds at six days old. God has carried our family through five open-heart surgeries and we continually lift up this pint sized miracle on a daily basis.
We pray for miracles... we pray for healing... we pray for strength for your entire family... we pray for the lives that you will touch through this journey. Thank you for sharing it with the world. This precious baby is loved, and is perfect in every way.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Love,
Sheila Elliott
www.caringbridge.org/tx/colby
I just keep thinking that if God can create Man from dust, then hands and feet are not too much to ask. He is sovereign, and chooses whether or not that is something he will grant, but He can do it. Your job is to trust him no matter the outcome, but never feel bad for asking him to BE GOD. Your baby is going to be one blessed little child. He/she will be absolutely beautiful and used in mighty ways by the Lord who forms him/her even now! May He continue to give you peace and HOPE.
katie and reagan--
once again your journal has touched my heart and has buoyed my resolve to ask for a miracle when i pray to our Sovereign Lord. you are an amazing testimony to His grace! may you continue to have strength for today and bright hope for tomorrow. God is faithful!
with much love,
nancy
p.s. i love the music on your blogspot!
Katie & Reagan, I have just finished reading your blog and have experienced so many emotions--joy, tears, prayers, your amazing faith, and your incredible spiritual maturity. What a blessing for your baby to be born to you both as parents. It will be awesome to see the future that God has planned for your family. Keep allowing yourselves to feel the prayers that are being lifted up for you and draw strength from them for those "numb" days. Thank you for sharing your honest thoughts and prayers. Take care and God bless you all.
Kay Loftis
Reagan and Katie, I have never met you but am a friend of Becky Peterson and one of the prayer warriors she referred to in her note. I too believe in miracles and have seen many, so we will continue to pray for just that. God is an awesome God. You will make wonderful parents to this precious child. This is a poem I like and thought I would share it with you. Many blessing for you. Julie
Baby
(Helen Steiner Rice)
A wee bit of heaven
drifted down from above -
A handful of happiness,
a heartful of love.
The mystery of life,
so sacred and sweet -
The giver of joy
so deep and complete.
Precious and priceless,
so lovable, too -
The world's sweetest miracle,
baby, is you.
Katie & Reagan,
Trust God.He tests his true devotees and only gives as much as they can bear.
This precious baby deserves the most loving,caring and VERY special parents.God chose you for this precious baby and trusts you the most.
We are proud of you and please give me the honors to baby sit the precius one when ever possible.
Katie, My name is Sommer Bledsoe and you and Reagan visited our COM group at Stonegate last fall. When I heard the news of your baby, I immediatly said a prayer for you guys. I remember the devestation and sorrow in your prayers at COM group over losing your first precious baby. I pray that God continues to give you strength for each new day you encounter. I myself am 20 weeks pregnant and found out this week we're having a baby girl. We serve the God of the universe, and each time I call out to Him on behalf of my baby, know prayers will be lifted up for your precious one. May the Lord bless you and keep you. In His Love, Sommer Bledsoe
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