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!!