Saturday, June 28, 2008

New Friends and Random Thoughts

As I have begun this journey with an unknown end, I have realized how kind-hearted mothers can be who have experienced the same situation. Doctors can't make promises and those closest to you may have a hard time relating to the situation. However, those who have traveled down this same road that I am on realize how difficult it can be. I have received so much encouragement from them and from reading their ideas and thoughts on their blogs. For this reason, I have added some of their blog sites which can be found on the left column of my blog. I hope that when you have the time, you might check out what they have to say so that you may be encouraged through the lives of children who have had diseases which have affected their lives.
Avoiding working on a school project which I need to turn in soon, I began to read some of my past blogs. It seems like a different person wrote those so long ago. This time last year (I believe that it was on this day to be exact!) Noah and I returned to the States from living in Merida, Yucatan, Mexico. We had no idea where God was going to take us in our lives. It "ended up" that I went to graduate school full-time while Noah worked about 12 hours a day as we began to build our lives in the States from scratch. We had no money, no cars, absolutely nothing. Noah was so patient as he walked to work many days, or my grandmother or parents would drive him there. As an adult this is very humbling because you look at the people who are the same age as you, and they are just at a different place in their lives. However, neither of us regret following God's calling to serve in a foreign country for years. We were so blessed through it. Noah had been called to begin seminary, but we couldn't both go to school at the same time. Because I was almost done we decided that I would work the year in order to finish my master's.
When I left for Mexico I did not know Noah. In fact, I did not know a single person there. My family was not in favor of me going - not because they were not in favor of missions, but they were fearful. I am the youngest of three girls, and just like me, they knew very little about what I was getting myself into. Also, they had ideas and hopes for me. Yet, I couldn't see myself doing anything else but going. I think that my mom had the hope of talking me out of it until the day I said that my ticket had been purchased. This was definitely the reality check that I was going.

My first day in Mexico I dropped my 70 pound suitcase on my toe, which caused the entire nail to fall off. My second day there I met Noah. We remained friends until the following February when we started dating. (I think that he should tell this story.) By August we were married.

He is my best friend, and we have been through so much craziness, but I am so glad that we are going through this together. God has blessed me with an incredible husband. Last week in labor/delivery classes we were told to think of a calm, peaceful place where we could relax. I realized how I really have not found that place here in the States, but my mind went to Mexico. On a very hot day Noah would fill a baby pool up with water, cover our gated fence with some plants, and we would lay in our swimsuits while reading a book. We could smell the fresh bread cooking next door and the sound of the bus as it passed by. When I remembered this, I realized how much I do miss it there and how easy it has been to get caught up in the busyness of life here in the States.
When I found out that I was pregnant, one of the things that interested Noah and me the most was how we would teach her to speak Spanish. This may help to explain her name a little bit better. It is Mary Magdalene's name in Spanish, but the vowels have more of an English pronunciation. Both of us learned the langauge later in life, which made it more difficult to pronounce more native-like. Also, we love the culture of the people there, and we wanted her to grow up open-eyed to the world around her, no matter where she lived. I don't think that we ever considered her not liking to learn the language because we like it so much. Oh my, have our thoughts changed since then.
As you can see my thoughts may be a bit random today, but with all that has been happening I have done quite a bit of reflection. Just a little about my sweet daughter...
Magdalena and I have been discussing her moving her head down so that she won't be breech. Having a C-section in addition to everything else would make the healing more difficult, and I want to be able to focus all of my attention and energy on her. She is constantly wanting sweets. I am trying to get her not to eat so many sweets, but it is hard not to spoil her. Even her daddy brought her a double doozie from the cookie store. (This is a big cookie consisting of 2 chocolate chip cookies with icing in the middle.) Please pray for Noah and me as we seek God's will in the many decisions that we have to make.

Wednesday, June 25, 2008

Update

Just for now I am going to simply post the letter that I have emailed out to some of you. I am sorry for this, but my mind is just full. I need a little bit of time to process it before I spit it out. Please forgive me for the time this may take. Thank you so much for caring and loving for Magdalena, our precious daughter.

Hello Family and Friends,
We are so happy that we will be able to celebrate Magdalena's 33 week birthday tonight! She is have a good summer swimming around.
We met with the neonatologist today who work with all of the surrounding hospitals. This was definitely emotionally exhausting. First, he said that the group sees 3-5 Trisomy 18 babies out of a total of 7,000 babies each year. Given Magdalena's weight of 2 pounds 1 ounce and her disease, she will weigh about 4.5 - 5.0 pounds at the time of her birth. There are some decisions that Noah and I must make before going to the hospital, and in a few weeks we will meet with the doctor who will be working at the time of the birth to let them know our wishes. This doctor was very kind and told us that we should never feel guilty about the decision we make because the disease itself is lethal, and any decision that we make may have no effect. Please pray for the strength to make these decisions.

Monday, June 23, 2008

Pop Tabs for Ronald McDonald

I was just about to throw away my Mountain Dew can when I remembered that my sister had said that we should begin to collect the pop tabs for the Ronald McDonald House. The money received from recycling the tabs helps pay for nights stayed in the house by the family.

This is a simple way to help families who are going to be dealing with a child's health, so the last thing they need to worry about is the financial resource for their own well being while their child is being cared for. There will be many parties in which cans will be used, consider having everyone give their tabs to you! You can make a good thing out of drinking bad-for-you soda!

Because this is a world-wide organization, consider giving to your local House.
If you know me personally feel free to just give them to me the next time you see me at church, work, etc., and I will make sure they get there. In fact, I would enjoy this!

Let's keep count! If you don't give them to me, drop me an email with how many tabs you gave to the Ronald McDonald House. Periodically, I will post how many we have collected together! Hmm...should we have a goal?

Sunday, June 22, 2008

A Sweet Friend

So many people have been so kind to me during this time in my life, but I want to mention a special friend. I won't mention her name because I haven't told her that I am writing about her, but she will know who she is. She had a baby die early and unexpectedly, and has offered many ideas to my sister since finding out about Magdalena's disease. (She is technically a friend of my sister's, but we are bound together through a common bond.) Things that I may have never considered before, but since my friend had been there, she knew. These things to consider or ideas have helped open discussions between Noah and I so that we keep our feet grounded.

Well, my special friend and I had a good small talk last night that meant so much to me. She showed me how to keep the memory alive of a sweet baby. Also, she taught me to do the smallest things that will make me feel better as the mommy, even if noone understands.

Every time I go to Wal-mart by myself I walk down the baby aisle. The same things are there every time I go, but I always spend at least ten minutes looking.
When I go into the baby's room I think of all the small things that are missing. Small, insignificant things like baby bath, wipes, lotion, baby towels, etc. I want so badly to fill the shelves in the closet with things for her. Then, on my trips to Wal-mart I stare at these items as I walk down the baby isle, and I am so tempted to put them in my buggie. I even pick them up, and sometimes put them inside my buggie, only to remove them. I tell myself that I should come to my senses. My sweet friend taught me that by doing these things is a way to deal with my pain, even if it doesn't seem to make sense to some people.

Maybe next time I will buy Magdalena a little something....

Friday, June 20, 2008

Learning for and from the Unexpected

This weekend I am house sitting for my sister and taking care of her dogs while she is out of town. Just breathing in her air made me want to blog. Noah is working long hours this week because of a shortage of employees, so after getting up I took another nap. I can't think of what I have done to make myself so exhausted, but a nap was needed. My sister's dog, Bailey, agreed that he was tired too, so he napped with me.

For the next month Noah and I are taking labor/delivery classes on Tuesday nights. It is weird how the instructor continually used the word "excitement" and "what to look forward to" because I knew that those words applied to everyone else in the class. At one point I really had to block what she was saying to keep my tears inside. I have learned to do that better at some times than others because I know that this will happen for the rest of my life. We were encouraged by the instructor to breast feed and she gave many opinions, but I just nodded my head. I know that we will just have to wait and see what we will do when Magdalena is born because so many of these decisions we cannot make now.
Also, my mom and I took an infant CPR class this week, and we learned so much. My mom is always helping out with the grand babies, so I signed her up and she willingly came with me. She was even amazed that we learned how to remove food from a choking infant!
It is good to be prepared for the unexpected when you can be. Again, as Noah and I have learned from this experience, we should never assume that we will be the ones left untouched by trials of this kind.

Next week I will be going for my 33rd week doctor's appointment, and afterwards we will meet with the neonatologist about Magdalena's care when she is born.

Thursday, June 19, 2008

Hope From the Past

As a kid growing up (mostly in the 80's, mind you), I used to listen to a Christian rock group that my older brother liked called Petra. Sometime in the early 80's my father, somewhat surprisingly, took us to a concert and I remember loving it. Of course we bought all of their albums and eventually tapes (CDs were still about 10 years away) for a few years and I even went to another concert of theirs with my youth ministry sometime in the early 90's. As a group, Petra is extremely prolific and still popular in some places like Mexico since they have lots of recordings in Spanish. Even when my interest in them and Christianity faded, I always respected them for being so openly straightforward about their beliefs and the fact that they use so much Scripture in their lyrics. There is no doubt where they stand.

Nevertheless, out of all music that I have heard from them, my favorite song is still one that I heard as a little kid at that first concert. It is called "Grave Robber" and God brought that song to my mind this morning as I was sitting here at work thinking about my little girl, Magdalena Grace. As the old lyrics came to mind, I began to cry (thankfully, I am almost always alone at work) thinking how meaningful that song is to me now. It was always a song that was profound and hopeful, but now it is personal. No matter what God chooses to do with the life of our sweet little Magdalena, Julie and I can rest in the fact that we will spend a joyful eternity with her in the presence of King Jesus .

I am so thankful that God uses things, even from 25 years ago, to remind us that He has loved us even before we were born and will continue to love us for all eternity.

This is "Grave Robber":

"There's a step that we all have to take alone
An appointment we have with the great unknown
Like a vapor this life is just waiting to pass
Like the flowers that fade
Like the withering grass

But life seems so long and death so complete
And the grave an impossible portion to cheat

But there's One who has been there and still lived to tell
There is One who has been through both heaven and hell

And the Grave will come up empty handed that day
Jesus will come and steal us away

Where is the sting? Tell me, where is the bite?
When the grave robber comes like a thief in the night
Where is the victory? Where is the prize?
When the grave robber comes and death finally dies

Many still mourn and many still weep
For those that they love who have fallen asleep
But we have this hope though our hearts may still ache
Just one shout from above and they all will awake

And in the reunion of joy we will see
Death will be swallowed in sweet victory

When the last enemy is gone
From the dust will come a song
Those asleep will be awakened
Not a one will be forsakened
He will wipe away our tears
He will steal away our fears
There will be no sad tomorrow
There will be no pain or sorrow"

~John Hartman, "Grave Robber"

Monday, June 16, 2008

God's Wonder

This summer has been an excellent time of relaxation for me. I have been able to keep up my house better, make Noah's lunch, go to the pool, etc. My professors for my last classes, which were in the spring, in the master's program did give me extra time to finish my work because I had gotten so distracted with Magdalena's news in April, and I just needed the time to deal with it. I lack only the final project of one class now, but doing that type of work is not stressful to me. Being able to keep the stress level low for school helped me to get it done, finish well, and still learn. Without the kindness of the university and professors, I can't say that I wouldn't have just given up at that point. I can't wait to see how God is going to use me having that degree because I have learned so much from it.

So I was enjoying a hot summer day last week driving while sipping on a cold, cherry diet coke when I heard a song that got my attention. It was Natalie Merchant's "Wonder". I don't know a lot about Natalie Merchant's beliefs or personal life or what her meaning of the song was, but I do know that God used it as a reminder to me. I write a lot about preparing for Magdalena's death and celebrating her small life because the odds of her surviving beyond her first year are less than 5%. I believe that God can work miracles, just as can be seen in the life of Annabel Grace who is three years old living with Trisomy 18 http://annabelgrace.blogspot.com/. However, I do want to be realistic of the huge possibility that God may choose her to come home early, and this is where the hope is. Her life was not meaningless, but full of wonder because she is a creation of God, and it is truly a miracle that she has continued to live this long when about 50% of Trisomy 18 babies don't. It is sad to me that many women and doctors don't recognize a Trisomy 18 baby as one of God's sweet blessings and creations, and they agree with terminating the pregnancy early. As I feel her kicking inside me now (she must know that I am writing about her), I just cannot imagine losing her before God's timing.

It is not only a disease like Trisomy 18, Edward's Syndrome, that takes the life of little babies. Let us not assume that "this would never happen to me or my friends" but allow us continue to pray for the women who are pregnant and their children's safe delivery into the world; yet, at the same time let us not see hopelessness if a baby does not arrive safely into this world. Let us be reminded that God's hand is in all things, and he is our main comfort and support. God uses even the tiniest wonders to praise His name.

Wednesday, June 11, 2008

31 weeks

First, I am beginning this blog to tease my oldest sister because I told her that I would. All of the details of keeping updates, pictures, videos, etc. I am just not good at considering them. I am much better at keeping my pain and thoughts private. However, when I do need to say a thought or idea out loud I enjoy telling them to Lori because she will talk with me and restrain her tears for when she is away from me. Now, we have cried together at appropriate times, but I cry a lot by myself and with Noah, so when I am talking about Magdalena having someone else begin to cry can make it tough for me. This is because I know the pain and I will want to begin crying right then and there. Lori has heard it all, and if you know her, you will agree that she is one tough cookie.
When we had a team participating in the March for Babies event to raise money for the March of Dimes, Noah set up a facebook group, Magdalena's Feet, to get everybody involved. Well, Lori on many occasions reminded me to do certain things to it to keep everyone involved. She is much better at it than I am, so I made her the "Boss of Communication". Because of this everyone has been continually receiving pictures and updates. Unfortunately, she will only be the "Boss of Communication" for the blog when Noah and I are unable to write, so, please, forgive me for not being good at posting and adding details to my blog. Because of Lori I am gradually improving, and please feel free to ask any questions that you may have. Our family loves to share about Magdalena's sweet life.


So to begin 31 weeks...
When I found out that I was pregnant I was always nervous about the smallest "weird" feeling because I feared that something could be wrong, but I would never have guessed that I would be in the situation that I am in now. It has helped me to learn never to take anything for granted because we truly don't deserve this wonderful child. It is only by the grace of God that I have the ability to bear children, and with that blessing he has given me another one, Magdalena. I am reminded of this daily with her small movements (or big kicks when my stomach will bounce because of her), and they make me a little teary eyed in a happy way.
Our family gathered Tuesday night to celebrate her life of 31 weeks at Grandmom's house. It is hard to believe how quickly the time has passed. The doctors said that I do have a little more fluid than a normal pregnancy, but it will only cause more discomfort. She is not taking in all that a normal baby would, and as of two weeks ago she weighed 2 pounds 1 ounce while a normal baby weighs about 3 pounds at this point.
Magdalena was so excited at her party because Grandmom made her a beautiful, little pink blanket, which she can't wait to touch, and Loli (Lori) gave her a big box of snickerdoodle cookie dough so that whenever she wants some her mommy can make it.

Last night Papa and Daddy finished putting together Magdalena's bed (while Mimi helped decide on a few decorating ideas), so if God should bless us with having time at home with her, she will know that bed was put together with lots of love. I am glad that the bed is filling up the spot where we had intended to put it for so long. It allows me to physically do something for her, to "nest" as many would say. It lets me tell her that if she wants to fight for awhile and God enables her to do so we are ready with a place for her to physically rest, but if it is God's will that she to go to her eternal resting earlier than we would like, she will continued to be loved by us.

Saturday, June 07, 2008

Her Name

I have recently been given the huge responsibility of updating the blog when Julie and Noah cannot. Although I am not reporting any new news today, I thought I would "test" the blog before August. So, while I am here, I thought it would be a good time for me to make a public confession - and yes, I have already discussed this with Julie. When Julie was anxiously awaiting the time to find out if the baby was a boy or a girl, all she talked about was having a girl. She wanted a girl more than anything. She wanted a girl so much, she and Noah already had a name picked out. Magdalena Grace. She was so excited about the name. Me? I couldn't believe that was the name they picked out! How was this little girl going to grow up in Mississippi with that name? Would she ever learn how to spell her name? I had to look at an email everytime I wanted to spell it. Now, as everything has progressed, I continually am reminded of Jeremiah 1:4-5. "The word of the Lord came to me, saying, "Before I formed you in the womb I knew you, before you were born I set you apart." God gave Julie and Noah the most beautiful name for my precious niece. In most of our lives, at some time or another, we have known several Marys, Katies, and Amys. But, we will all probably know only one Magdalena Grace. And, she has already left a huge imprint on your heart, as she has mine.

Friday, June 06, 2008

The Hope and Glory of the Gospel

Sweet little Magdalena's imminent birth has certainly challenged Julie and me. We know that every day that passes brings her closer to us holding her in our hands which we eagerly look forward to, but we also are keenly aware of what may come shortly after. Julie and I acknowledged to each other a few days ago that we are scared. Are we strong enough to deal with this uncertainty and the pain and grief that are likely on the road ahead? I am not sure, but I am so thankful that we don't have to be. We are not left alone in a meaningless universe with no hope. We have an amazing God that we can trust to take care of us and meet our needs just when we need them.

"Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." (Hebrews 4:16)

I love this verse and the promise it contains! The last few words could be translated, "...and find grace for a well-timed help." God's grace comes to us just when we need it, not before and never too late. That is why Jesus says not to worry about tomorrow. Tomorrow has enough trouble of its own, but God is already there and His mercies are new every morning, just when we need them. So how do we look into an utterly unpredictable future with, most likely, a great deal of grief and loss in it without becoming morose, self-centered, and depressed? How do we go on loving other people when we are scared and our hearts are grieving over what is to come? We preach Hebrews 4:16 to ourselves every day and fight the fight of faith in God's goodness and love for us. We approach the throne of grace with confidence! His grace will be sufficient and we can even rejoice in our sufferings because we have such and amazing God who will meet our needs at exactly the best moments.

My prayer for Julie and me is that our faith, while being challenged every day, will grow deeper and stronger. We love our little Magdalena and we want to spend as much time with her as we can before her true Father takes her home, but we know that His plan is best and we can rest peacefully in that.

Thank you, Lord Jesus, for the wonderful life of our little girl. Her life has already changed us and drawn us closer to you. Thank you for your amazing promises that we can bank on. Teach us to trust you more every day.

Tuesday, June 03, 2008

Beautiful Pictures





Here are some gorgeous pictures of our sweet baby, Magdalena Grace, who is officially 30 weeks old weighing 2 pounds and 1 ounce. I think that she has Noah's nose!

Sunday, June 01, 2008

Knowing Magdalena

This disease has affected everyone in my family. There is always the arrogant assumption made that things like this could never happen to me, and here we are dealing with a disease that we had never heard of before Magdalena. That is what makes her even so more special to me because she reminds me daily of our dependence upon God and His strength. There are so many times when I see another pregnant woman or baby and tell God that this just is not fair. I can even feel myself getting angry at the situation, but then, I feel a little kick and I am reminded by her that this is her purpose in life, no matter how long or short.
As I begin my 30th week of pregnancy I am getting a bit scared as our time with her in my belly is quickly coming to an end. She daily tells me she loves me, and sometimes she even makes mistakes by kicking my bladder but she is always quick to apologize. Her movements are her way of communicating with me, and that is our bond. I am the only one who knows her this well, and even when she keeps me up at night while doing flips in my belly, I love every second of it. Sometimes it makes me laugh out loud with happiness.

I have been torn with the idea of whether or not we should put Magdalena's bed together. When first finding out about her disease I didn't think that I would because of how unlikely she will be able to return home with us. Nothing is impossible with God, and we are praying for even a moment. I realized that I don't want to and I can't deny her existance, and I do enjoy feeling closer to her by sitting in her room and looking at the few items that her Mimi and Papa bought for her. Noah and I have decided to have it put together so that we can enjoy anything that is associated with her sweet life, even something as simple as a bed.