Mathida Hope Walker May 6, 2011

Mathilda was born straight into the arms of Jesus.  Mathilda Hope had Turner Syndrome.  Turner Syndrome is caused when one of the sex chromosomes is missing our partially missing. This occurs in approximately 1 out of every 2500 female births and 10% of miscarriages and stillbirths.  Turner syndrome can have different effects including, short stature, infertility, heart and kidney problems are common but normally treatable.  Turners does not effect intelligence and girls lead normal productive lives.  Turner syndrome itself is not fatal but Mathilda has developed a very large cystic hygroma and hydrops.  This is caused when the lymphatic system does not develop right.  The lymphatic system carries white blood cells and helps remove waste from the body.   The body is unable to process the fluid and it builds up in the back of the neck.  This lead to hydrops, meaning the rest of her body is also filling with fluid.  Due to the fluid her other organs were unable to develop properly.  She went into heart failure and peacefully her heart stopped beating.  We love her more than words and blessed with our first Angel.

Alexandra’s House Perinatal Hospice was with us during our entire journey.

www.alexandrashouse.com

Here are some links about her condition:

www.genetics.emory.edu/…/Emory_Human_Genetics_Cystic_Hygroma.PDF

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004561/

http://www.turnersyndrome.org/

Stories from families and informative info

http://crosshealedhearts.blogspot.com/

More stories from families with many diagnoses

www.benotafraid.net

 

 

My Mathilda

Thinking of Mathilda today. Starting to work on PowerOfaLife.org. I am still amazed how much effect this little angel had on the world! Any thoughts or quotes for the new website would be great. If there is someone you would like to honor let me know and we can work on getting something going!

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Thinking of Mathilda

As time goes by I thought I would think of her less but I think of her just as often! I think of her as I driving and see butterflies. I think of her when I am with my lovely boys and how much she loves them and watches over them in heaven. I think of her often and so thankful she changed my life! I love you Mathilda Hope and will always be proud of being your mommy!

Time

Man time never stops it is amazing how things change from year to year but even day to day is sometimes amazing! We have one more fostering class and two more homestudy visits and we will be officially licensed. I have started buying things for our girl room! It was sooo exciting to buy baby and girl clothes! We are excepting 0-5! Praying for God’s patience and guidance as we embark on the journey! I am speaking at our Church’s 125th Anniversary service on Sept. 25th I will be sharing Mathilda’s story and how she blessed us with a wonderful church family! Love my Mathilda!

Finding Peace in His word

Psalm 139:13-14. You made my whole being; you formed me in my mother’s womb. I praise you because you made me in an amazing and wonderful way. What you have done is wonderful. I know this very well.
Ephesians 5:1-2. You are God’s children whom he loves, so try to be like Him. Live a life of love just as Christ loved us and gave himself for us a sweet smelling offering and sacrifice to God.

God created so many wonderful things we sometimes have to choose to look. Sometimes it is so easy to be negative. Just stop and think of all the beauty and wonder in this world. When people fail you just stop and look at the clouds or a butterfly fluttering on the side of a road.
There is so much good we can do in this life so much love to share. We need to live like Christ and appreciate and find the good and beautiful and never forget the power of love.

Mathilda

Dear sweet Mathilda,
We love you so much and think about you daily. I hear songs and see little girls and I start to get sad, but then I feel a little nudge and I remember I will see you again!
Until then God has called home many of our dear friends and family! I hope you get to meet them and they get to see your sweet smile and cute nose! We love you always!

God’s Promises For You

I have been reading the book God’s Promises for You each night and I loved this one Jesus, our security. We are on a great climb that is high and stakes are higher. God gave us the Holy Spirit as our harness. And His word as a rope. Our first steps were strong but we become weary, and with height we have fear. We lose our footing, focus, grip and we Fall! For a moment which seemed like forever you tumbled wildly. Out of control and disoriented falling. But then the rope tightens and the tumble ceases. You are secure in the harness and remember it is strong! You grab the rope and find it to be true. And though we cannot see our guide, we know Him, know that he is strong and always there to catch us when we fall!
I fell when I found out I lost Mathilda. I did not know what to do knowing I could not help or heal her. I felt lost I felt there was no path underneath me to walk. I was suspended in the loss of control the fear of losing her. God came to me and comforted me. He guided me but it was my choice to follow. He gave me peace and told me to give the burden and fear to him. He would show me beauty and wonder through Mathilda. He would give me miracles I just had to look. I may not strong enough but He is. There will always be pain and an ache that I did not get to keep her here with me, but she gave me gifts that will stay in my heart all my life as well! She showed me sadness and emotions are not bad it is what you do with them, beauty is all around us, every life is important and beautiful, it is ok to not control everything, it is peaceful to have faith, everyone deserves to be loved, we can all change the world and the list goes on. I pray I do not forget what God showed me carrying and looking at Mathilda. I hope I continue to change and grow into a better person. I hope I am able to help others and share God’s love!

Mathilda’s Story on benotafraid.com

I was 29 years old, we had two beautiful boys and were 19 weeks pregnant with our third child. We went to get an ultrasound to find out gender. The tech made two swipes with the wand and her demeanor immediately changed. She asked if we had done blood work to check for anomalies. We said no that we do not believe in abortion so it would not have changed our course just made things more stressful. I asked her what was wrong several times and no answer was uttered. I finally asked if my children and family needed to leave the room. She said, “Yes.” With that “yes” my heart broke. I knew my life would never be the same. I asked if this condition was compatible with life and she said never that she had seen. Then I crumbled.

The doctor came in so matter of fact. “Your baby has a large cystic hygroma and hydrops it is not compatible with life; I would recommend termination so that it is easier on you.” Hygromas are fluid filled sacs usually in the back of the neck and hydops is when that fluid spreads to other areas of the body. He recommended an amniocintisis and within seconds a needle was inserted. I was given no time to process anything that was going on, I was truly in shock.

We both told the doctor we did not believe in abortion we would let God lead this journey however long or short it may be. The doctor then got the medical book and showed me graphic pictures of aborted fetuses with hydrops and hygromas. Again we said we did not believe in abortion. We were given termination paperwork and told if I chose to continue the pregnancy to schedule an appointment for two weeks.

At first I was numb, I did not want to find out the gender I wanted to separate myself from the situation. We were told it would take several days for the amnio results, but the next day came and I received a phone call telling me were having a baby girl and she had Turner Syndrome. The doctor wanted to clarify several times that it did not change the outcome she would not survive. That was the first time I broke down.

I had always assumed I was having another boy, and I had never dreamed about having a girl until now this finished the puzzle made her so real. This was my first step in mourning my daughter.

We went for three appointments a week to check for a heartbeat. She fought hard for 6 weeks; she passed at 25 weeks longer than they expected but shorter than I had hoped.

I thanked God for those 6 weeks. We were able to name her, Mathilda Hope Walker. We were able to love her. We met amazing people from all over the world that came out of the woodwork to support us. We were introduced to Alexandra’s House, perinatal hospice. Words cannot describe the appreciation and love we have for them. They were there every step of the way to support us and show us God’s love. Through Mathilda we were given a support system larger than we could have ever imagined. We saw her change the hearts of our doctors and all who heard her story forever.

When she was born they handed her to me. When I looked at her I saw God’s image. I have never felt more peace than looking at her beautiful face. They had so adamently told me to terminate her and I am so glad I did not succumb to their notion that it would be easier. I loved every swollen inch of her from head to toe. I have never felt closer to God then those moments. God opened my eyes to the beauty and perfection, not an anomaly. Mathilda has guided me down a path towards God’s purpose for my life. People have told me that they were sorry I did not receive the miracle that we prayed for. I say Mathilda was much more than one miracle, she was many and she continues to bless my family through the hearts she has touched and continues to touch.

Paperwork!

Wow there is a lot of paperwork for fostering! We have most of it done waiting for the home visits to begin and start taking our classes! Praying for Faith in God’s timing and we find the perfect addition to our family!
I am also starting paperwork for the Mathilda Hope Foundation to help families with fatal or difficult diagnoses! Lots of paperwork! Working on my Board of Directors:0). Exciting but lots of hoops to jump though! Praying we are able to help many families and children in need!!!

Life

It is crazy how fast life moves and sometimes I wish I could stop time and process! My husband said I am a different person and I am happy to say I am. Mathilda changed me quickly but I believe for the better!! I really feel stronger, I try to find the beauty and peace in things around me. I want to be a better wife, mom and friend! I feel closer to God I read devotionals every night, pray more and pray more with the kids, we go to church and have found a church home, Chandler Baptist. Mathilda woke me up a bit!
Jason was baptized!
Life is Hard but so amazing! I want Mathilda to be able to tell Jesus wonderful things about her family on Earth!

Where my mind is walking tonight!

It is amazing how much your love for your children grown everyday, my Mathilda included. I feel her watching over me and it makes me a better mom. I listened to the song Blessings by Laura Story a couple times today and it is easy to pray for and feel blessed with the easy things in life, but their are blessings in our tears and joy comes from our storms. I miss my Mathilda and my hopes for her life on Earth were shattered but by golly gee she is waiting for me in heaven and there are a lot of blessings in that. So I pray for the Lord to turn my tears into testimony and from that testimony Good Things to come. So I see joy in my tears and I know that God is even closer to me through my broken heart.  I continue to learn so much through this pain.  It is my mission to get the words that can give others a glimpse into how wonderful carrying Mathilda was even though she was not going to make it.  To tell you how peaceful it was holding her and looking at her cute nose. I am not saying I was not mad, frustrated and sad but God gave us these emotions for a reason and I am learning from them.  A part of me will always wish to have her here beside me but I know God chooses a path for us to walk and I know He walks it with me!