Saturday, December 29, 2007

Three Weeks to Go!!

Another restless night……but it’s okay. I am reaching the uncomfortable time in a pregnancy when you have to roll over about every hour, or go potty, or blow your nose from congestion. But…let me make clear I am not wishing this one away – for obvious reasons. The last few nights I have been able to go back to sleep and get good rest, ,so that’s been good. But…not tonight. Tonight my mind is racing so I thought I would come check on my friends. The last few days with Christmas and company being here I haven’t had the time to get on line….but my new friends fill my thoughts throughout the day, and I wonder and pray for how they are doing.

I had my 34th week Dr. appointment on Thursday. Was a bit of surprise, why I don’t know…I mean I am 34 weeks and should expect to be making plans. But…it got here sooner that I am mentally ready for. Maybe preparing for Christmas threw me off (a welcome relief). My Dr. said to pencil in the 17th of January, 3 weeks!! He said my fluid level is increasing and Mary’s weight is lagging more, so he is concerned to wait much longer than that in fear that we will not have time with her. So…I go weekly and we will make decisions as we go. Wow, have my thoughts been racing. I woke up yesterday morning and called Mom in tears. She asked what are you thinking…and I couldn’t come up with what I was thinking. Just needed a good cry I guess, which feels good for some odd reason. It’s hard to cry because the numbness is always there, so when I can get it out, it feels good. Honestly, I am scared. I am scared for this to be over, I am scared of Mary Grace not being with me any more. I am scared of not knowing how things are going to play out. I am scared for my little girl’s hearts to be broken when they lose their baby Sister. I am scared of the moment so many describe as somehow being beautiful (by God’s grace) being a nightmare for me, the kicking and screaming kind. I know that my God will take care of me, but I am scared non-the less.

My little baby Allison turned 5 on Thursday and we have her birthday party today (Saturday). Of course on our children’s birthday we replay every moment of that day in our thoughts….I remember being so excited for our family. When they said “it’s a girl” I remember the feeling of overwhelming joy that I had a 2nd daughter, that Kailey was a big SISTER, that Allison was so perfect and precious. I remember feeling so excited to bring her home and having everything ready for her. While replaying this in my mind on Thursday, I couldn’t help but be overwhelmed by sadness. When the reality of 3 weeks hit……I felt sad because in my mind I know that God could work a miracle, but honestly I don’t feel this is his plan. I hope the lack of faith doesn’t hurt my outcome, and I know that God doesn’t work that way, but I have to be honest in my thoughts. I feel sad because I feel like I am preparing to give Mary Grace up…not bring her home. I am preparing for a funeral not a home coming with excitement and joy. And although I should be rejoicing in the fact that she will be free of this world, this t-18 junk and she will be in Jesus’ arms….I want to keep her. I want her to be with us not in Heaven.
I know God is in control, I know he loves me, I know he loves my family and he will take care of us…I know that none of us know the outcome and I shouldn’t play thoughts of the unknown in my mind. But…I can’t help it sometimes….so I will go take a nice relaxing 6 a.m. bath, read some scripture and prepare for a nice day with my girls. And this reminds me how quickly our thoughts can change, how quickly God can real me back in. Praise him! Praise him! Praise him! He said to me….Do not be afraid…so I will work on that.

Please pray for these specifics:
Mary’s growth to increase
That she will turn from the breach position so things are not complicated
That my Dr. and nurses will be just the right ones to be with us during this time and that God will give them and us the wisdom we need for the decisions ahead of us.
That we will have time with Mary Grace…..just the right amount of time for us
That our families can make it to Texas at the right time
That I can control my thoughts and fears
That God will blanket my Kailey and Allison with his protective love

Friday, December 21, 2007

A Good Week; A Good Day

Well it’s been a good week. As you know I can have my moments but God has been carrying me through every day and although some days I may be heavier and more of a load to carry, most moments are good. This week has mostly been good because I have stayed so busy getting ready for Christmas. Chris helped with the cards this year, which was a big relief, and I do like shopping for him and the girls very much. I love the real “real reason for the season” more than anything (especially this year). How God chose to send his only Son to the world as a baby, to a woman like Mary, born in a lowly stable, to live among sinners and to sacrifice himself for us in the most horrific way....... so that we could be saved and spend eternity with him….and all we have to do is believe and accept him!! That’s it, just believe!! I am so thankful for Jesus and so thankful for his promises, his promises that make everything that happens here on earth fail in comparison to what Heaven will bring us. I am thankful for God’s perfection!

Chris has the rest of the year off starting today and we had a really good day. It’s been a while since he has had some time off to do NOTHING and I didn’t realize how doing the daily “stuff” by myself has put me in a rut. He has always been the kind of Husband and Father who helps out a lot and I am thankful for him every day…..but just getting the normal stuff done when I feel like my life is anything but “normal” has kind of been getting to me. Kailey went to school for half the day so Chris and I was able to spend some time talking this morning about nothing really and then Allison came and got in the bed with us and we loved on each other and cuddled. Why don’t we take time for that more often?? Then we got some paperwork stuff done that we have been putting off and the rest of the cards out. Kailey got home and we went to a lake nearby and Mary Grace took her first hike. It was beautiful weather and Chris and our three girls and I hiked and found really neat treasures like fish bones, smooth rocks, a broken fishing pole and shells. Then we went fishing but caught nothing. There were several moments when Satan was trying to get to me, I was trying to imagine never getting to go hiking and fishing with Mary Grace, thinking about next Christmas and her not being with me any more. There was a time when the girls were climbing rocks with Chris and I was able to have about 15 minutes to myself to reflect on the day and listen to the water and think…well you know the thoughts that come racing – the negative ones, but I stopped Satan in his tracks today!! HA!! I said I am hiking and fishing with Mary Grace and she is with me now, she is with me today and I will have fun in it! It worked… It was a really nice, normal, non-hurried day and I am thankful for it!

This week while reading a few other blog sites from precious Mommy’s who are in the same shoes I am in, I found comfort, peace and thoughts that really helped me to think differently this week. Thoughts on Christmas and its focus, thoughts on how to enjoy this celebration of Christ and to not let Satan still this year with my girls from me. Also something in particular was shared at a prayer meeting for Maddox Stanfield by his Mommy's (Kenzie) Pastor. I printed it out and have read it every day, several times a day. It’s something I believe but have never been able to word it like he has. I do not mean to copy…but I wanted to share it with you because it is what I believe and reading over it every day has given me comfort. I know Kenzie would want me to share/copy! I put Mary’s name in and a few additions for myself where applicable.

He said “There is a guarantee of a healed body, hopefully here on Earth, but definitively in Heaven in the presence of our God. Mary Grace will for sure be free of the extra 18th chromosome that invades every cell of her body. Life begins at conception. God has created Mary Grace inside of me and although we may not know her immediate destination, we know that he doesn’t make mistakes! That each and every child created, whether lost to miscarriage, stillbirth, or early infant death, was created in God’s image to be brought into the presence of the Holy One. In God’s perfect creation, this wouldn’t be happening…but we live in a fallen world, full of sin and evil. And still, God has His hand upon us. He has ordained each child conceived in a mother’s womb to have an everlasting life with Him. If for no other reason then to have an eternal presence with the Lord, our Mary Grace was created for a life and a purpose. Our only job is to honor that life given.” We thank Jesus for the honor to have Mary Grace as our 3rd baby girl!!

I want to again thank my new friends who are willing to share themselves so openly and honestly. I hope you all realize how much it helps me and others to get through every day!

A hymn comes to mind:
Oh Victory in Jesus, my Savior forever. He sought me and bought me with His redeeming blood. He loved me ere I knew Him and all my love is due Him, He plunged me to victory beneath the cleansing flood.
I have the Victory! And Satan you may hold my thoughts captive at times and you may pull me down sometimes but I have Victory and you can never, ever win that battle!! It's already won!!Praise Jesus!!

Friday, December 14, 2007

Can't sleep

When I got in bed tonight, miraculously I wasn’t focusing on Mary Grace. We had watched a movie, got into bed and was talking about something not related to this pregnancy! Then…. Chris turned out the light and the thoughts immediately came rushing in. How does that happen? One minute fine, the very next a nut case. I was having a break down with all the thoughts jumping from one thing to another and I had to get out of bed for fear of keeping Chris awake and/or having to talk about my feelings that I have no idea how to explain. So…I had to come check on my friends and try to maybe write some thoughts down. Who knows where this is going to go????

There are times that I have to stop and think, is this really happening? Is this a bad dream that just seems real? Then when I actually get myself together the reality hits me that I am 32 weeks pregnant and I not preparing to raise my 3rd daughter. How do I accept this? I had a pretty productive day cleaning the house, getting laundry caught up and the thought occurred, am I nesting? Then it hits me that I had that energy today that I had with Kailey then with Allison but what is it for today? Then honestly I felt bitter, I felt bitter that my “nesting” energy is used on my every day laundry not on preparing a nursery for Mary Grace or getting her things washed with Dreft for her to wear when she comes home. What in the world is happening, how can I possibly be okay with this?

Then I think about parents who have 2, 3 and 4 year olds that have cancer, for some reason can’t walk all of the sudden and have to go through testing or have just simply lost there children tragically. And I think, Oh God please don’t ever let that happen to me/us – I know that I could not handle that – I could not give up my girls- no can’t do that, can’t handle anything major happening to them!! I had even said when I first learned that this baby could have t-18, before I knew it was a girl, before I knew her as my Mary Grace, that if it was in my life’s story to have to lose a child, then I would rather lose this one than Kailey or Allison. And just thinking those thoughts and saying those words actually makes me sick, it breaks my heart. To even have to be in a position to think that is unbearable. It makes me feel guilty in ways I can’t explain but the thought of Mary hearing me say those words or think those thoughts kill me. I want her to know that I love her, I want her, I want to keep her, I want to raise her, I want to rock her and sing to her every night like I have Kailey and Allison. I want her to wear the outfits that I have loved on Kailey and Allison, I want to have the family room junked with baby toys so I can complain about the mess all of the time, I want to lose cabinet space to her baby food and sippy cups….the list goes on and on. But…the house structure will not change, there will be no baby room for Mary, toys will stay in the toy room…things will look the same, I will even look the same eventually. But…the truth is…the house will not be the same, I will not be the same, we will not be the same because although we are still praying for a miracle, realistically we will not get to keep Mary Grace with us. And even though I would rather have had Mary Grace with us for a moment than not at all, it still breaks my heart, I still feel sad, I still feel anger and it will break my heart to give her up…..even to Jesus.

Keep praying for me please, and even though this entry may not look like it, God is carrying us and helping us through this time. I never want it to look like he is not with us because he truly is – his grace is sufficient and we do have joy in our hearts. Moral of this story don’t write at 1:20 a.m. in the midst of a break down!!

Wednesday, December 12, 2007

Just an Update

I wanted to give everyone an update on my Doctor visit yesterday. I am, this week 32 weeks. I had an ultrasound yesterday and a Dr. appointment and went well. Mary’s heart rate is still looking good at 146 – she is measuring about 2 weeks behind now so that gap is getting a little bigger each time. She is gaining weight so that’s good. I have more amniotic fluid than I should but nothing abnormal with t-18 babies. The Doctor said that if nothing happens between now and 38 weeks he would like to induce me then to have Mary in a controlled setting - he feels she will be ready then – so 6 more weeks to go. I sat in his office yesterday and felt numb and sad in the reality of it all. That Mary and this pregnancy can seem so “normal” and the outcome still looks the same.
With all the sweet babies with Trisomy 18 or something similar that I have got to know, every story and outcome is different. So I can’t help but wonder, be excited even fear what mine/ours will be. Most of the time I do not allow myself to go there yet but as the date approaches it seems that my mind will be “there” before I know it. I pray to God daily that with his all-knowing power that he helps me to accept his timing and know that it’s what is right for Mary Grace.

My Mom and Dad went to the local Christian Radio station in KY last night (WDFB – 1170AM and 88.1 FM) and held a prayer meeting for Mary Grace. My Dad has bought a little outfit for Mary to come home in and they anointed it and prayed for her. The preacher that I grew up with runs this radio station and has been so close to our family for many years. We are blessed to know him (Bro. Don Drake) and his family and to have them as prayer warriors! We are continuing to pray for a miracle!

Please pray specifically:
That God will continue to be glorified in all of this.
Mary’s weight and growth will continue to increase.
My spirits to stay uplifted and that my mind and heart would stay focused on Christ, his goodness and truth and not focused on fear and doubt.
A Miracle for Mary and an acceptance of whatever that may be
Praise Jesus for Tristan Hostetter - He is home and is now 10 days old!!
Pray for my neice Tara - she is not feeling the best with her symptoms from Lupus (she is 15)

Almost every day Kailey Mae leaves for school or Allison goes to school I say “This is the day that the Lord has made” and they say – “we will rejoice and be glad in it”. I want to live that every day – I want to show them what that looks like – I want to show them that it’s real and not just words we say. Only with God can I do that right now, but then again only with him can I do anything….. and with him ALL things are possible.

Friday, December 7, 2007

My Dream.....

I had a dream last night about Mary and it was not the first time I have had it, so it has tugged on my heart to share it.

I dreamed that I was pregnant with quadruplets (and nobody knew – not even the doctors!) and all 4 babies had T-18. Three of the babies decided to get together and take all the 3rd 18th chromosomes for themselves and let Mary live! Mary was the one that was the most kind in the womb – she moved over for the others, made them feel more comfortable and gave them kisses. They also heard and felt all the prayers that were specific to Mary because she was the only one we knew about. Mary was born perfect and healthy and the Doctors were astonished. Then I started to give birth to the other babies who did not make it. The Doctor then realized that they were the ones reading positive for t-18 but Mary was perfect!! I obviously mourned for the three babies but I didn’t realize I had them to begin with and Mary was going to get to stay with us. We were the .01%!! The Doctors didn’t give God the credit for a miracle they just said it was the other babies who had it all along. I shouted out that God had healed Mary and that he took the t-18 from her body and gave it to the ones who were willing to be sacrificed.
When I woke up – I lay there and thought about this dream and the possibility of it. Can you imagine the joy?!!

I started thinking about all the hidden meanings I could take from this dream. The first thought was Jesus. The ultimate sacrifice. God gave his only son to suffer and die so that all of us could have the hope of eternity in Heaven, living in perfection. And Jesus willingly stepped down from his throne to die for us. If it had only been me on this earth – he would have still died for me. Thank you Jesus.
Then I thought why is Mary even still with me today. She is already beating the odds. She is with me first because God’s timing is perfect but also I think because she has more people to touch. She in a sense is being sacrificed to somehow, someway have Jesus and God be revealed and glorified to someone. I have always been a “good” Christian. I have loved the Lord for years and have always tried to be what he wanted me to be. But I could have never witnessed and been a testimony for God the way that I have been able to be this year without my precious daughter Mary. I have always been a Christian who has lived this life mostly by faith and feelings but have never really been knowledgeable enough of the bible to feel comfortable testifying about God – I just talk more about my feelings and not the facts. But now and the age of 37 God has given me something, something more powerful than me, something more powerful than I could have ever come up with on my own, and I pray that I make him proud through this trial. I pray that I make Mary Grace proud, she deserves the best from me, the best of this crummy circumstance because she and God have given me my dream, my 3rd Daughter and I will always be her Mom. My little girl Mary will do more and will touch more people than most living on this earth. I am so proud of her!! I will not "waste" this opportunity, I will not have this be for nothing. I love her and God too much and am too grateful to let Satan win any aspect of this battle. We are more than conquerers with Jesus on our side.

We had a session today with two wonderful photographers from the Now I Lay Me Down To Sleep foundation. They were photographing the girls hugging my belly and kissing Mary Grace like they do every night before bed. And I realized that I will have a record of this, not just from my heart and my memory, but for others to see that I am a Mother of 3 precious girls and that we are and will always be a family of five. Now abides faith, hope and love and the greatest of these is love and I am full up!!

Monday, December 3, 2007

Standing on the promises of Christ my King

It has been a very sad weekend. Not only do I struggle with the reality of my own, I struggle for the dear friends I have met who are also going through this or a similar journey. I have said before that if someone has to endure this I wish I was the only one, but unfortunately I am meeting more and more who are dealing with t-18. This weekend the Luce family met and had to let go of their sweet precious girl Poppy Joy. And although they “beat the odds” and got to spend some time with Poppy, it just doesn’t seem like enough – it doesn’t seem fair that we should rejoice in 3 hours. But we do and the Luce family does. How faithful is that!? Please continue to pray for them.

I said to a friend today that as long as we have our babies in our tummies that we have hope that at least one of us will be the full-blown miracle, the .01%, but as time passes there is more loss and it is heartbreaking. It scares me to be upset about “only 3 hours” because I would rather have that than nothing at all with Mary, but God knows I want more. Isn’t that okay? So please continue to pray that I will have some time with Mary Grace and that my bitterness will not take away from what God has in store for us. Please pray that I will continue to find joy in this situation and that the sadness does not let me allow Satan to win the battle he is waging against me. Greater is he that is in me, than he that is in the world. I’m standing on the promises of Christ my King, and Satan will not win – he will not steal my joy, he will not take away the great things God has in store for my family. God will carry me when I cannot walk, he will walk beside me when I can walk and he will take care of me when I feel like I cannot make it through this. How do I know this, because he said so!

One thing I would like to specifically praise God for is the opportunity to share this journey with sweet Angie, Emily, Chrissi, Yvette, Kenzie, Mandy, Kristen, Boothe and more. The more I read of their hearts the stronger I feel that I can make it through this. I am amazed at their strength and faithfulness to our Savior Jesus Christ. I am honored that God chose us for such a thing as this and however difficult it is, I can’t wait to see what he has in store for us. I know I couldn’t make it without them, they are each a great support. God is using them and I am thankful. I am also so thankful again for all the support and prayers we continue to receive from our dear family and friends. We could not do it without you. The cards, e-mails and messages to our blog help us to stay focused on the good of this – thank you. I want to also recognize the total strangers who have poured out their hearts and prayers to me. I am so thankful for you all.
Most importantly I am thankful that Jesus will never leave or forsake me and that he is faithful to his promises.

Please continue to pray for the Hostetter Family. Tristan was born today. I will be checking their blog for updates so please feel free to do the same. I pray that God will continue to bless them with sweet time with their new precious baby boy!

My sweet and loving Aunt Rita sent me a card from Nashville and I wanted to share a quote that she wrote to me from Beth Moore. “When our hearts are hemorrhaging never forget that Christ binds and compresses them with a nail scarred hand. Christ never allows the hearts of his own to be shattered without excellent reasons and eternal purposes.” Thank You Aunt Rita, I really needed that today!

Sunday, December 2, 2007

Sweet Poppy Joy

I wanted everyone of my prayer warriors to pray for the Luce family. I have had a weekend of checking my computer almost hourly to catch updates on this sweet baby girl, Poppy Joy. I have had the honor of meeting several friends who are going through this t-18 journey and have found strength and comfort from each of them. Angie Luce (Poppy's Mom) has particularly been one of those sweet women who has reached out to me and helped me to find some joy and hope with what we have been challenged with. I am in awe of her strength and Godly wisdom and how she shares her faith and love of Jesus.
Angie was expected to meet Poppy on December 6th but on Saturday after hours of contractions, the Dr. decided to deliver Poppy. Poppy was born and Angie, Nathan, Marianna and a ton of friends were able to meet her alive. They were blessed with 3 wonderful hours but as you can understand, this will never be enough. 3 hours, 3 years, 3 decades, 3 lifetimes will never be enough for us to have with our sweet babies. So....the days/months ahead will be difficult and I pray that God will give them peace that can only come from him. Please read Nathan's (Poppy's Dad) entry about her birth and pray for them as they go through the next phase of this heartache. (I have Poppy as a link).

I along with others are comforted in the fact that Jesus is holding sweet Poppy now. She is with Copeland, Jonathon, Eliot, Miller Grace, Madeline and so many others and they are perfect, they are well and they are happy. Yes, we want them with us, but if that is not how it is to be, then praise God they are with our Savior and his promises are being fulfilled to us. They have no tears, sickness or sadness in their life, just perfection, sweet perfection. Something we will never have until we are with them.

God bless the Luce family. They are faithful and they will continue to be blessed. My heart aches for them but I know through the grace of our Savior Jesus Christ, they will be okay. We will be okay.

I ask that you also pray for Tristan Ashton Hostetter, another sweet baby that I have been in prayer for. He will be born tomorrow, so please lift him and his family up in your prayers.

Jesus give us strength to get through these horrible circumstances and to keep our eye on the prize, you - Sweet Jesus - you!

Wednesday, November 28, 2007

Right Now

I cannot sit here at the computer and hear my two girls outside swinging and laughing and not be thankful for what God has blessed me with. I walk through my house and am still amazed at what a wonderful home God has blessed us with – a dream home that I never imagined we would, could or should have. That brings me to the thought of my amazing husband and what a good husband, Father and provider for this family he is and how God brought Chris specifically to me. And in this moment I am happy and am thankful and I feel blessed. I at least have this, where so many do not and it reminds me to be joyful in what I have right now.

But my heavenly Father knows that this is not something I feel all the time. That more and more lately as I get further along in my pregnancy, I feel oppressed and grief stricken with the diagnosis my sweet Mary Grace has been given.

I always feel sad for a few days when I come home from Kentucky but this time my heart is way more heavy. I hate to think that the next time I would be there would possibly be to bury our sweet Mary Grace. On Monday we had to meet with the funeral home to make some arrangements and it was the most surreal thing ever. I still feel numb from it and still feel like it was not me sitting in that chair looking at caskets and talking about the details of this. Then we had to go to the cemetery to look at the plot closest to my Grandma. When I went in the office I told the lady that I could not purchase anything – I felt like I was giving up on Mary if I did that. I can not give up on Mary! It was an awful day to say the least. But I think we feel numb and depressed at times to actually protect us from real feelings.

When we got home from KY yesterday we had a Dr. appointment, sono and first meeting with the Neonatal specialist. The ultrasound was so good, Mary looks good – 2 ½ lbs, good heart rate, 4 chambers look good, her movement is good, she looked so sweet and I left the room and said to Chris, how can she look so perfect and be so perfect – it’s hard to imagine anything wrong with her?? And for a few minutes I felt maybe we could be the .01% - I mean I am one in 3,000 right??! Then we met with the Dr. and we are reminded of the truth of our situation. We are reminded of what we have to prepare for and it is overwhelming.

We had a wonderful week in Kentucky and had a very nice Thanksgiving with our family. However, on Thanksgiving morning I woke up in a funk. I tried to fake it with staying busy cooking but I didn’t feel thankful at all – I felt mad. This is the one time of year that I get to see all my family and that it should be a joyful occasion. We should all be celebrating the fact that I am pregnant with my 3rd daughter. But I couldn’t find the joy or any reason to celebrate. So….I cooked and snapped at Mom, Dad and Chris a few times (Dad maybe more) which made me feel worse but at least I wasn’t sad, just mad which to me is at least a relief from sadness!!

Thanksgiving has always been my favorite time of year. You have more time off of work to be with family and the stress that Christmas can bring (buying, crowds, money, gift giving etc) is not there. You are just thankful and with family. One of our favorite traditions is to sit around the room and all my family, cousins and friends (about 35 of us) tell what they are thankful for. Well, when I woke up I told myself all day that I was going to skip myself this year – I wasn’t going to give God any credit for anything! And as I started to listen to my wonderful Christian family one by one tell the things they are thankful for – I grew anxious, almost breathless, my heart started racing and when it was my turn I couldn’t be passed up – I couldn’t not share how truly thankful I am for EVERYTHING that God has given me. God has given me life, God has given me hope, God has given me salvation and the promise of heaven for all my loved ones and me if we just believe!! It’s free – we do not have to earn it with anything about ourselves (Thank God). I know God doesn’t expect me to like what this fallen world has done to us. He doesn’t expect me to rejoice in the fact that Mary has Trisomy 18. But he does expect my obedience. So… I will trust him, I will love him and I will thank him for everything, especially his faithfulness!
Please especially pray for Poppy Joy – I ask specifically that her head size (fluid) decrease so that Angie can have a normal c-section. They have an appointment tomorrow.
Thank you to my wonderful family and friends for your support, love and care in the most difficult time of our lives. We love you.

Friday, November 16, 2007

Mary - Jesus' Mother

I have been thinking a lot about Mary – Jesus’ Mother. I have been imagining all the emotions that she must have felt when God chose her to carry his only son; fear, anxiety, excitement, worry, pride, faith and much more I am sure. All the things that every Mom feels when she becomes pregnant with a precious gift from God. When the angel came to Mary and told her the “plan” she simply asked, “how will this be since I am a virgin?” and the angel told her that “ the holy spirit will come upon you and the power of the most high will overshadow you. So the holy one to be born will be called the Son of God. Even Elizabeth your relative is going to have a child in her old age, and she who was said to be barren is in her sixth month. For NOTHING IS IMPOSSIBLE WITH GOD”. Then Mary didn’t say – well I am not sure if I can do this, I am not sure if this is right for me, I am not sure if I can fulfill his plan that will be to give him up some day. She just said “I am the Lord’s servant, may it be to me as you have said” She didn’t think of all the possibilities of what could happen, that unless Joseph agreed to marry her that she may never get married. If her father rejected her and kicked her out that she may be homeless and forced to do whatever it took to survive. That people would think she was nuts when she told them that she was carrying God’s son. She didn’t even realize the greatness of what God had in store for her, she only knew that she was his servant and she willingly obeyed. My study bible says that if we offer ourselves willingly, even when the outcome seems disastrous God will carry us and never let us go. Praise Jesus!

Even before God chose Mary to be Jesus’ Mother, he also had planned that I would be Kailey, Allison and Mary Grace’s Mom and I am forever grateful. Mary had 33 years and 9 months carrying Jesus and every day she knew she would have to give him up – did she choose not to be obedient because it would be to difficult to give up her son– no. Can we ever have too many days with our children, do we EVER want to give them up – NO! I have known for 11 weeks that my time with Mary will be very limited, that I am not even guaranteed another day, but I would not change a thing, I would not choose to not have her in my life, she is my precious baby that will FOREVER be mine, nothing can take her away from me, definitely not death thanks to the blood of my Lord and Savior Jesus Christ. It also reminds me that none of us have a guarantee of tomorrow with any of our children and that we need to cherish every minute with each of them. I pray that I am reminded of this every minute of every day of my life. This is yet another precious gift that my Mary Grace has given me.

Thank you Jesus for all my gifts. Thank you especially this day for Mary Grace and no matter how much or little time I have with her, that I am grateful. Thank you for choosing me to be the earthly mother of Kailey, Allison and Mary and help me to be the steward that you had planned for them. Nothing is impossible with you my sweet Jesus and I pray that you help me to accept whatever comes our way.

Monday, November 12, 2007

A hard day, but I am on the winning side

It seems when I am around people I feel strong, almost normal and I feel like I can focus on something else other than Mary’s condition. Then, when I am by myself ALL I can think about is Mary Grace. How can you feel so strong and in an instant later feel like crawling in your bed and sobbing? I had a dear friend call tonight with an issue she was sad about. We talked and she said about 30 minutes into the conversation that her problem wasn’t anything like we were dealing with and that she was sorry to not have asked about me/us. I told her, no offense but it actually feels good to not be the focus of the conversation. Not that I want her to have the problem to discuss but that I feel tired of being the “needy” friend. Since my miscarriage two years ago, through our one year of trying to get pregnant and a few months of infertility treatment and through 28 weeks of pregnancy, I have been the “needy” friend and honestly I do not like the spotlight.

Today has been hard. The weekend I had to look forward to is over, Chris is traveling and I am on my own with the girls. They are such good girls that it’s not hard work wise with them, but my mind will not turn off. Every night our routine is to read, sing hymns then pray. Side note: Our church has mostly praise music which I love, but even more than verses from the bible, old hymns move and speak to me – when I am down I can start singing “Blessed Assurance” and it helps heal me. So….I want my girls to learn the hymns, to have them hidden in their hearts for good and bad moments in life– so I have a hymnal from the church I grew up in. When I sing at night I can’t help but get visuals of having my 3 girls in the same room while I sing. Kailey singing with me, Allison dancing like a ballerina and Mary Grace lying on the floor smiling at the two of them, kicking and wiggling her arms. Then of course I get sad. Then come the prayers. Kailey always says responsible more mature prayers from the heart. Allison says the same prayer every night that breaks my heart…she prays every night “God please help baby Mary to be healthy, we will play whatever she wants, we will sing whatever she wants, we will feed her whatever she wants, we love her and will even understand her”. And although I ultimately trust God, I can’t help but to wonder sometimes how he can seem to ignore such precious and pure prayers.
I asked Chris to take over some of the insurance issues because I don’t feel I can handle it. Well because of patient confidentiality he can’t talk to the case nurse assigned to us. So….I had to make the call today to register for the “special” program. They asked lots of questions and one was……are you depressed, feel down or feel anxiety? I said well I feel down and depressed which fueled a whole other list of questions regarding my mental stability. After all that…..they said they offer a program where a nurse will come meet with me one time to explain what preterm labor is, and will provide me with educational resources. Come on……can I get a break here?? What am I suppose to be asking for, what am I suppose to be doing, who am I suppose to be contacting? I am 28 weeks this week and I am suppose to be getting a nursery ready, I am suppose to be buying cute new clothes, I am suppose to be going through all the hand me down clothes and washing them and putting them in a new dresser for the baby!!!! I feel lost, I feel unmotivated to do anything, least of all call case nurses and funeral homes!!
We talked this weekend about funeral plans. How do you do that? How did we get here? It’s crazy we have to think of these things right now. We do not know if Texas is going to be our “forever” home so I do not want Mary Grace to be buried here. So…while in KY for Thanksgiving should we be talking to funeral homes? Looking at caskets?? How does Mary get there, how can I leave her there? I mean, it’s crazy to be in this position and I can’t help but to feel angry about it sometimes. I know that this is normal but I don’t like the feeling, I don’t want to feel it but I know God knows my heart and that’s just being honest.
Here are some specific prayer requests. I covet your prayers.

First that we will have time with Mary Grace, we can look in her eyes and hold her close and that the girls can meet their sister. Allison specifically is excited about changing Mary’s diaper, I pray she can change at least one.

It’s hard for me to pray this but if you could for me……that if it would be God’s will that there could still be a full-blown miracle, that we could beat the odds and that I can dig deep for that hope.

If a miracle isn’t God’s plan, that I would continue to have a wonderful pregnancy, feel Mary lots and that we would go full term for the birth. That my family can make it to Texas for the birth and have some time with Mary as well.

That we could gain the knowledge of taking care of what we should be or need to be taking care of with clarity and strength (the details).

Pray for our entire family, extended included to know how to handle all of this.

That our appointment with the Neonatal specialist on the 27th would go well and that we can be equipped with the information and knowledge we need while moving forward with our birth plan.

Continue to pray that through all the emotions that are felt during this, that God is glorified in all of them.

Please pray for Eva Janette and her family. She's a new precious baby added to my blog who has been diagnosed with T-18.

A hymn comes to mind that I want to close this crazy day and probably this disoriented blog with.

Along the way of life are many foes, that daily war against my soul;
But constant victory my Savior gives to me, as I press on to the goal

On the winning side, I’m on the winning side, I’m on the winning side with Jesus; Though hot may be the fray, my soul can boldly say, I’m on the winning side with Jesus

The battle may be long and hard to win, and Satan’s host may press me sore:
But though I may be tried, I’m on the winning side, I shall triumph ever more.

On the winning side, I’m on the winning side, I’m on the winning side with Jesus; Though hot may be the fray, my soul can boldly say, I’m on the winning side with Jesus

With courage in my soul I’ll do my part, for Jesus I will loyal stand;
So on the winning side triumphant I abide with the faithful holy band

On the winning side, I’m on the winning side, I’m on the winning side with Jesus; Though hot may be the fray, my soul can boldly say, I’m on the winning side with Jesus.

Saturday, November 10, 2007

God and his people are so good

I have been needing to blog since my first post to say a lot of things that are on my mind. However my family from Maryland were coming for a visit this weekend and it was a great task to get the house ready for company. I am not complaining because believe me, I need the incentive nowadays to clean the toilets!!
I want to first share with you how my morning started. I was going to get to sleep in until 8:00 and my honey came in the room at 7:00 - I said "now why are you coming in here at 7:00?" (in a sweet voice of course). He said your friends have done something special for you. So I get up and look outside in my front yard and there are pink and white baloons surrounding my sidewalk with prayers attached to them. We got the girls up and my Mother and Father in law came outside and I felt the presence of God and my friends all around us. The girls were excited and loved Anna and Kathryn's art work. I read prayer after prayer and was overwhelmed by the love we have in our lives. Thank you to my friends and thank you to God for placing them all in my life - without God or you we could not get through this. The girls cut each balloon which was a symbol of that prayer and thought going to Heaven. I have never been touched by something so much. Chris of course got it on video and we will have that memory of love and prayers for Mary Grace forever!
The next thing I wanted to share is how moved I am by the comments on my blog. You are all so wonderful. I am sad however to find more and more sweet Mommies and families that are going through this or something similar. I have added a few more names to my blog for you to visit and add to your prayers. I truely wish we were the only case of this t-18 but we are not by far so we share in prayers, faith, hope and love for all of our babies. May God help all my new friends and their babies through their difficult time - my heart aches for each of them.
The thing that I am reminded of is... this is what life is all about. Lifting each other up, praying for each other - not just in the hard times but in the good times. I prayed to God last night about how proud he must be of all his children. His children are holding on to him, depending on him and witnessing to others about his love and Grace - even in the darkest times possible people are finding purpose, the angels are rejoicing I know. Mary Grace is reminding me of this daily - well hourly honestly and I am thankful for her and everything she has already brought to me.
I am not sleeping that well....mostly because when I wake up and Mary is moving around I do not want to go back to sleep to miss any of it. I cherish every kick of her precious club feet. The other night I woke up and started to feel the soreness of my hips like I did with Kailey and Allison - and thought okay so this begins. I started to complain to a friend the next day about my hips hurting and I had to take it back. I would take my hips hurting and keeping me up forever if I could just keep her with me. I want this pregnancy to last forever because when it's over we have to say goodbye to our sweet girl. But...that's selfish I know.....I know she is the one out of all of us that will never have to suffer the things this fallen world gives to us, she will be with Jesus - our ultimate prize. Pray that I can remember that when the time comes.
I had a question on my blog - I was 14 weeks when the talk of all of this started but it was confirmed at 18 weeks that she had T-18.
Well, I am going to go to Dallas with my husband for a night away while family is here. God knew I needed those prayers this morning, now I feel I can actually enjoy our time today and tonight, that we can feel uplifted and encouraged by the outpouring of love from our friends.
Thank you so much for everything, mostly for your faithfulness to God and to us! God is so good, God is so good, God is so good, he's so good to me!!

Wednesday, November 7, 2007

Finding My Way

Well, this is my first posting. I have been pretty much addicted to reading about others who share in my experience, grief and battle with this thing called Trisomy 18. I am not much of a writer or communicater (if not talking) so please be patient and understanding. Also , this doesn't have spell check!! I am having a hard time knowing what to say or where to start. I guess I will start with my story.

I am 37 years old and have such wonderful blessings in my life. I am blessed with possibly the best husband God could have ever given me. I have two beautiful, precious daughters with one more on the way. I am blessed with a great family who are all believers in Christ and have the promise of eternity with Jesus Christ our savior - the best gift ever and the only thing that makes any trial in life liveable. My Mom and Dad live in Kentucky and are my best friends. I have the most perfect Sister and simply the most loving Brother in the world. My Brother has blessed me with a wonderful sister inlaw and 2 awesome nieces and a great nephew. My husband's family lives in Maryland and I couldn't ask for a better family there. His Mom and Dad are great and supportive and his brother is like my own. His "Memom" is the most precious lady ever. I could list all of our wonderful family but there are too many to mention. I have wonderful friends in KY, MD and TX! I know God brought us to TX so that I would have the friends I have in my life, right now in my life.

After our second daughter turned 3, we decided that we were not finished that we wanted another baby. We tried for a few months and got pregnant and were thrilled. This pregnancy ended at 8 weeks and I was very disappointed, however I had hope that it was just one of those things that God knew was not right. My very first pregnancy I miscarried so I felt equipped to handle this after being blessed with two precious girls. So.....we carried on, and on and on and on and after about 1 year of trying we went to the Doctors. After 2 months of fertility treatment, we were pregnant. The first 12 weeks I felt so scared but then after the first trimester - I was "safe!". Then at 14 weeks some blood work came back "extrememly low values" - I will never forget those words at the beginning of this journey. They repeated it and I just knew it was one of those dumb things that would turn out okay. Well - it was the same so my Ob sent me to a specialist who performed a level 2 ultrasound. They saw "markers" for a chromosome abnormalitiy (club feet, a hand malformation, a 2 vessel cord). I had no problems with such little things but.....they wanted to do an amnio and I told them I would not terminate for any reason so I do not think so. They informed me they thought it could be trisomy 18 - something not compatible with life and that I should be prepared, regardless of what I would or would not do. I came home and began a week long, non sleep, tormented time of research into what this t-18 is. I was horrified that the outcome is pretty much death. I knew I needed to be prepared if for nothing else, my other two girls who prayed for a baby brother or sister for so long. They did the test and 8 long days later, they verified the worst. I was and still am most of the time, in shock. I wasn't one of those stories of "oh, we had test come back crazy, we did an amnio and everything was fine" or "oh, they told us that our baby would not make it and she is perfect!". All the heart wrenching prayers from TX, to MD, to Kentucky didn't work!! How could this be???

I felt so alone, so confused and so lost. I started looking at support pages and found that people actually live through this, their faith actually is strengthened by these precious babies and that this may not be the end of my life!! I began to realize after about 3 weeks of being really depressed and non functional that I needed to be okay for my other girls and for my husband. So...I started to think differently. I started to see that this baby IS an answer to our prayers, that she had been given to us specifically for a reason and that I was her Mother and had a responsiblity to her to love and find joy in her existence - she deserves that!! I began to pray that God would help me enjoy every moment of my pregnancy, that I would feel her move lots and that I could rejoice while she is with me and mourn only when the time will be here to mourn. God has helped and sustained me, Chris and our girls. We are loving Mary Grace, enjoying her and would not ever choose to not have her in our lives. Because of Jesus she will always be with us and we will look forward to eternity with each other.

Our bible study group had just wrapped up doing "Having a Mary Heart in a Martha World". I started to imagine my little girl sitting at the feet of Jesus, worshiping and adoring him as Mary did - thus the name Mary and grace...... is our hope. Thank God that we do not have to be perfect, we do not have to earn our way to heaven, that by Jesus' blood and his GRACE we will be with him for eternity. Thank you Jesus for your promises, for your love and for your grace - they are the things that are helping me through the days and will take me to my Mary Grace some day.

I was going to journal my thoughts in a word document and keep them to myself. I was just going to find encouragement through other posts since I am not good at this. But on Sunday night one family I had been following lost their little boy to t-18 before they got to meet him. I was devestated for them and scared for me. I followed her post and saw that everything was going pretty good and they would probably get to have some time with him before he went to be with Jesus. I had been encouraged through other stories that Mary would probably make it to birth and that we may have some time with her. After he didn't make it - I will be honest - I was angry, angry because...come on....we are not asking for hour, one day, is that too much to ask for??!!! Then I read the Mom and Dad's post right after they lost Jonathon " God's presence and comfort was intimately present through the service and care of His people. His grace was immense through this time of grief. He is so good and has sustained us through this as He has promised. I know there is much more to come, but we praise Him and trust Him because He is faithful.". If they could actually write and feel that then I can too! This is why I am addicted to the blogs, this is why I read and this is why I must share. God WILL sustain me, he PROMISED that if I love him he will work this for my good and he does what he said he will do - I know I am not perfect and I have a lot of questions that I will probably never see answered but I do love him, he knows I do!!