Lilly Thoughts

The day I have been dreading since Lilly went home has finally arrived.  Last week Liberty told me, "I don't really remember when we had Lilly."  It's not surprising.  I expected it, hence, the dread.  Liberty was only 2 when Lilly got sick and 3 when she died.  I knew she wouldn't be able to remember everything.  I guess I was just hoping she would be able to hang on to something.  The fact that she has no concrete memories of her sister doesn't distress her at all.  She is perfectly content to hear my stories about Lilly.  She can't be bothered with unrealistic expectations, like remembering life before the age of 4 :).  She is forever my little optimist when it comes to Lilly.  When I'm sad, she always reminds me that I will see her again soon and I still have pictures.  When I tell her that looking at a picture isn't the same as holding her, she simply replies, "you're right, but its ok." It's always been "ok" to Liberty.  She has never doubted in God's perfect plan for Lilly.  She has never been angry, confused, frustrated, or too sad.  She simply believes she will see her sister again and that is good enough for her.  Oh how I love love Liberty.  What would I do without her?  I always tell her that God knew how much I needed her and that is why he made her first.  It is so true!

Nonetheless, the fact that she can't remember anything really makes me sad.  She had a very special relationship with her sister. I guess in my mind it also brings up the possibility that I might start to forget things as well.  This, of course, is terrifying to me.  What if I can't remember what it felt like to hold her little hand, or what she smelled like, or what each little scar on her body looked liked? What if I forget how it felt to hold her in my arms, or how precious it was on those rare occasions when she opened her eyes, or how wonderful it was to kiss her perfect little lips.  I want to store these little treasures in my heart because they are all I have left of her.

I rarely get too down about all we have been through with our sweet girl.  I know it must seem crazy, but I honestly don't feel like I have too much to be sad about.  I miss Lilly terribly, but the challenges we faced and continue to face are precious to me.  God has used them to stretch and grow me in ways that I didn't know were possible and might not have been otherwise.  Yet, today I am sad.  I am sad because Liberty doesn't remember Lilly.  I am also sad because last night I sat in a room full of women who talked and shared about their amazing little ones.  I am incredibly blessed to know these women.  I am incredibly blessed to share in the struggles they have raising children with special needs.  I love that I have the opportunity to be a part of their lives and their children's lives, but last night I sat and listened to stories and all I could think about was the fact that I don't have any new stories.  Their lives are very difficult and stressful and I envied them because they still have their children.  I wished I could complain about doctors, bills, insurance, lack of sleep, and the million other things that come with raising a child with special needs because that would at least mean I still had my daughter.  I know, I feel horrified just writing it.  It is a completely selfish thought and not one I would truly act on even if I had the power. 

I know the sadness will pass.  I know God is always gracious to remind me of his plan and I am so very thankful for all 3 of my girls.

Liberty's Kindergarten Graduation Weekend

This past weekend my sister and her family and my parents all came to visit.  We all love it when they can come!  They arrived on Saturday around lunchtime and we all ate at Pops.  After lunch we came back to the house to change into swim clothes to go swimming at my parent's hotel.  Mom chose to stay at a hotel here in Guthrie with an indoor pool so we could take Liberty and the other two babies (Emory and Hannah) swimming.  Of course, Liberty was so excited.  She had a blast swimming and even Emory seemed to enjoy it.  Liberty still can't swim, but she has a blast trying to figure it out.  She is actually getting pretty good at swimming under water.  It's keeping her head above the water that seems to be the problem.  Not to mention, she seems to swallow more water than is probably good for her. 

After we finished swimming, we came back to the house and had a very short, formal graduation ceremony for Liberty (check out more pictures and video on our homeschool blog).

My beautiful little graduate

Emory would not cooperate for pictures

After Liberty's graduation we headed to Hideaway Pizza for dinner.  YUM!  We had such a great time visiting and eating with family.

My sister (Amanda) and her daughter (Hannah)

Emory, Nana, and Papa :)

After a terrific dinner we headed back to the house for some homemade chocolate cake.  Liberty is such a chocolate junkie.  She wanted a chocolate cake with chocolate icing.  She played with the babies and with her graduation presents until it was time to go to bed.

On Sunday morning we headed back to the pool bright and early :).  Liberty and Nana (the rest of us weren't interested in swimming a 9:00 a.m.) swam until it was time to check out of the hotel.  After that we headed to Bass Pro.  Liberty always loves looking at the fish and the boats.  Emory, Hannah, and Liberty all bought matching hats.  Those babies are too cute!

Emory and Hannah at Bass Pro

We at lunch at Earls in Bricktown and then the family headed back to Texas.  We had such a blast and Libety enjoyed every minute of her special graduation weekend.

2 years ago...

today our daughter met her High Priest.  What a beautiful thought.  We had this picture taken back in February.  It makes me think of what it must feel like to meet Jesus.  One of my favorite images of Christ is that of our High Priest.  Revelation 1:12-16 describes HIM in detail...

I turned around to see the voice that was speaking to me. And when I turned I saw seven golden lampstands, 13 and among the lampstands was someone "like a son of man," dressed in a robe reaching down to his feet and with a golden sash around his chest. 14 His head and hair were white like wool, as white as snow, and his eyes were like blazing fire. 15 His feet were like bronze glowing in a furnace, and his voice was like the sound of rushing waters. 16 In his right hand he held seven stars, and out of his mouth came a sharp double-edged sword. His face was like the sun shining in all its brilliance.

This year we are in Washington D.C. on what we celebrate as Lilly's homecoming.  Usually we release balloons as a reminder of where she is and to keep our eyes and hearts focused heavenward.  This year I wanted to do something a little different since we are in D.C.  I decided that we would still release balloons, but I wanted to focus on the freedom we have in Christ.  Freedom seemed to be fitting theme being in our Capital.  So, I made tags to attach to our balloons.

I also thought it would be wonderful for Liberty (and for us) if we actually got a response from this.  It would be a real tangible reminder of how our Lilly touched the lives of so many in such a short time and continues to do so.

We would also love our friends and family to participate as well--especially if you knew Lilly.  Leave us a comment and let us know how know our little girl has impacted your own walk with Christ.

We released the balloons today at a park somewhere outside of DC.  We each said something we loved about Lilly and then each of us had a balloon to release.  It was really sweet and Liberty loved it as usual. Emory didn't hold on to her at all and let it go immediately. Liberty's balloon got stuck in a tree (the trees are significantly taller and more abundant in Virginia =))  Liberty was very upset, but after about five minutes, the balloon got free of the tree much to all of our excitement.  We did video the balloon release but I can't get it to upload.  It was very sweet though.

Thank you for continuing to share in this journey with us.  We love you all.

The day Jesus came to get Lilly...

Last night on our way home from bible study, Liberty asked me to tell her the story about when Jesus came to get Lilly.  Her questions about Lilly pop up at the most random times, but I cherish every opportunity to share with her about her sister's life and about our Savior.  This story, however, is particularly difficult to recount--that day being the absolute most difficult day of my life.  Scott and I have always encouraged her questions and we have always tried to be very straightforward and honest with her, sharing more and more as she is emotionally ready to process it.  So, after a deep breath, I told her the story.  I told her how I was sitting beside Lilly when she stopped breathing.  I told her about how the nurses and the doctors rushed in.  I told her about how I picked Lilly up and held her in my arms rocking and praying for her.  I told her about how I was still rocking her when Jesus came and took her out of my arms.  Liberty loves the idea of Jesus coming to get Lilly--it makes her happy, not sad.  Usually our conversations about Lilly end with us discussing what Heaven must be like.  Liberty said "When I get to Heaven the first thing I'm going to do is run to Jesus.  Then, I'm going to run to God.  Then, I'm going to find Lilly!"  How sweet is that!?  Instead of talking about what Heaven would be like though, the conversation turned to who we would like to meet when we get to Heaven.  This basically resulted in listing every person we could think of from the Bible.  When we got to Paul, Liberty launched into the story of Paul's life.  It was absolutely priceless.

It is such a joy to share with her all of our joys and trials and what God is showing us.  It is so encouraging to watch how she processes things and how her little heart is so trusting and can barely grasp the concept of evil.  I am cherishing this innocent time in her life because I know it won't last forever. I am also so very thankful that the Lord entrusted three precious little girls to us.  I am honored to be their mother and thankful that God uses them to reveal Himself to me.

Thank you Lord for Liberty.  Thank you for using her to heal my heart and to draw me nearer to You.
Thank you Lord for Lilly.  Thank you for using her to show me what is really important and to draw me nearer to You.
Thank you Lord for Emory.  Thank you for using her to stretch my faith and draw me nearer to You.

Heaven

I find myself overwhelmed this morning with a longing to see my Jesus face to face.  One of the most precious gifts God gave me when He took Lilly home was a true an honest longing and anticipation for Heaven.  As Christians I think we often see our eteranal home as the end of our journey rather the beginning of our journey.  The thought of heaven sounds really great and one day we hope to find ourselves there, but we would rather stay earthbound as long as possible.  What I have learned is that there is nothing this world can offer that comes close to what Jesus is preparing for us (John 14:2-3).

I was listening to this song by Chris Tomlin this morning and I captured a vision for Heaven like never before.  My favorite part is at the end when he sings "my faith will be my eyes."  Oh friends, one day we are going to see it!  We are going to stand in front of our Savior!  I  am going to see my little girl standing among the angels singing "Worthy is the Lamb!"  I wish it was today.  Come Lord, we are waiting anxiously!!!!


There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say, "it is well"
Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead
Chorus:
I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God, fall on my knees
And rise
I will rise
There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes
And I hear the voice of many angels sing, "worthy is the Lamb"
And I hear the cry of every longing heart, "worthy is the Lamb"

Mitochondrial Disease Awareness Week

This week is Mitochondrial Disease Awareness Week.  In the year and a half since our daughter died, I haven't been very outspoken about the disease or what is happening in the field as far as research goes.  Truthfully, its because I'm not all that interested.  I know that seems crazy, but the facts are the research in the field of genetics is making little to no progress despite what you may have heard or believe.  This doesn't mean that I don't believe in the research, especially if it is privately funded.  I'm just not interested in pushing the cause myself, even though Scott and I have a 25% chance of having a sick child each time we concieve.  All that being said, there are so many people affected by this disease and more being diagnosed every day.  The type of mito disease that Lilly had is very rare, but there are many other types that are more prevelant and affect many people--mostly children.  Like all horrible diseases there is no cure and no effective treatment options for most mitochondrial disorders.  Please take the time to pray this week for our family (especially Emory) and the rest of those around world who are dealing with this disease.

Mitochondrial Disease Fact Sheet (from www.umdf.org)

WHAT ARE MITOCHONDRIA?
Mitochondria are often called the ‘cell’s powerhouse.’ They are specialized compartments within almost every cell. They are responsible for producing 90% of the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce energy.

WHAT IS MITOCHONDRIAL DISEASE?
Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy. As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended. 

Imagine a major city with half its power plants shut down. At least, such conditions would produce a “brown out” with large sections of the city working far below optimum efficiency. Now imagine your body working with one-half of its energy-producing facilities shut down. The brain may be impaired, vision may be dim, muscles may twitch or may be too weak to allow your body to walk or write, your heart may be weakened, and you may not be able to eat and digest your food. This is precisely the situation people with mitochondrial disease find themselves.

Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse and often progressive. They include: strokes and seizures, muscle weakness, gastrointestinal disorders, swallowing difficulties, cardiac disease, liver disease, diabetes, blindness and deafness and susceptibility to infections.

WHAT CAUSES MITOCHONDRIAL DISEASE?
For most patients, there is a genetic mutation in either the mitochondrial DNA or the nuclear DNA. The mutation may have been inherited from the mother or from both parents, or it may represent a spontaneous mutation. For most patients with mitochondrial disease, the genetic mutation has not yet been identified. There are environmental factors, even certain medicines that may interfere with the mitochondria and result in symptoms.

HOW COMMON ARE MITOCHONDRIAL DISEASES?
Every 30 minutes a child is born who will develop a mitochondrial disease by age 10. At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.  Mitochondrial disease is a relatively newly diagnosed disease – first recognized in an adult in the 1960s and in the 1980s for pediatric onset cases. It is greatly under diagnosed and the true prevalence is difficult to determine. Research has consistently shown that mitochondrial dysfunction is at the core of many very common illnesses and chronic conditions of adulthood. These include: Alzheimer’s Dementia, Parkinson’s disease, diabetes, hypertension, heart disease, osteoporosis, cancer and even the aging process itself. Furthermore, autoimmune disease such as multiple sclerosis, lupus and rheumatoid arthritis appear to have a mitochondria basis to illness.

Happy Birthday to my sweet Lilly

Today Lilly would have been 3. I am celebrating that God allowed me to be her mommy for 20 months. I miss her more today than ever. I feel so blessed that she was born. Even though the journey has been painful, I would not trade a single second I spent with her.

God has been so precious these past few weeks to remind me to bring my hurt, my sorrows, and all my burdens to Him. He has given Scott and I such peace the last couple of years, but the Lord reminded me that I am still hanging on to some of the pain and disapointment. How awesome He is to draw me near when I find myself doubting His promises.

Happy birthday my sweet angel. I can't wait to see your face one day soon!

My heart...One year later

One year ago today our precious beloved was reunited with her Creator in Heaven. I just want to share with you all some of what we have experienced in the year since Lilly went home.

First, God's amazing peace has continued to cover us as we have mourned. From the first seizure, to her last breath, and every day in between God gave both Scott and I an overwhelming sense that everything was going to be ok. He has continued to uphold that promise this past year and we have never had a moment of dispair. This is not to say we have not missed our little girl or struggled with unanswerable questions. We miss her physical little body more than words can say, and it is painful to press God for answers and only hear silence. Yet, daily we are refreshed and restored with His goodness.

We have also continued to learn from our experiences with and without Lilly. We are not only learning about God's amazing truths as He continues to grow and stretch us with His wisdom, we are also learning the practicalities of living with loss. These are all difficult things and it is often confusing and frustrating as we sort through different situations and emotions. However, all three of us have grown closer and find ourselves rejoicing at how blessed we are. There really are so many great and wonderful things God has shown me this past year. I wish I could share them all, but I will only share what has been on my heart this last week. It has actually just been a feeling that I really couldn't put into words until this weekend. It was the peace and assurance that has been with us from the beginning, but was perfectly spoken this weekend by a wonderful, Godly women. It comes directly from the Word and cannot describe more perfectly how I feel at this moment...

I would have despaired unless I had believed that I would see the goodness of the LORD in the land of the living. 14Wait for the LORD; be strong and let your heart take courage; Yes, wait for the LORD. Psalm 27: 13-14

These days are so few and something better IS coming, friends. I mourn the loss of my daughter, but she is already is the land of living and I long to be there with her! This is why I have peace, this is why my life isn't so hard, this is why my sufffering isn't so great and my burdens light, and this is why I rejoice for Lilly! I do not dispair because one day soon we will see our Creator, our Savior, our most High Priest in all His glory. His goodness will pour over us and these days will be forgotten in an instant.

I love all of you so much and thank you for being so faithful to us through this amazing journey. We still count your prayers as blessings.

Visiting Lilly

Lilly is buried in a historic cemetary in Rochester, Texas. The towns population is 378 and the cemetary is surrounded on all four sides with acres and acres of cotton fields. She is surrounded by generations of family going back to the late 19th century. It is truly God's country and a perfectly peaceful place to remember her. We went to visit last Wednesday. I thought it would be special for all of us if we planted a tree and decorated it for Christmas. It will also be a nice tradition that we can do every year. I bought a dwarf spruce and planted it at Lilly's graveside. Liberty had a blast decorating it and thought it was so wonderful that Lilly would have her own Christmas tree.

She started to get sad once she finished decorating the tree and didn't have anything to distract her. She sat beside Lilly headstone and looked at her picture the rest of the time. Right before we left she said the most precious prayer. Even in her moment of sadness she was able to thank God for Lilly and praise Him because she is in Heaven. I think we can all relate. We are overjoyed that Lilly is with her Creator and that soon we will join her, but we miss having her here with us!

Lilly's headstone turned out absolutely beautiful with one exception--her last name is spelled wrong. We called about it right away and the place that made it is going to fix it, no problem. Here are the pictures. Just use your imagination and pretend its spelled correctly :-). The stone matches the other family stones that are around hers. Her great grandparents and great uncle are buried right across from her.

Right after we finished decorating the tree a little butterfly flew up and landed right on it. It was the craziest thing considering it is way to cold for butterflies. Nonetheless, the little thing couldn't get enough of Lilly's tree and hung around until we left. It was really sweet and a perfect reminder of our precious girl. It was beautiful day and we had a great time remembering our princess and all the joy she brought to our lives.