A year to Celebrate

Today is a day we celebrate.  We celebrate the wonderful gift we held a year ago, but had to give up too soon.  We celebrate a year of trusting God and letting Him take our sorrows. We celebrate a year of moving forward.  Today we celebrate Nathan's life. 

A year ago today I had to say goodbye to my second son.   Most people could not even imagine doing this once in a lifetime yet Tom and I have done it twice.  The pain of that day never goes away.  Holding Nathan, knowing we were not taking him home with us, broke my heart.  I will never be the same.  I will never recover from that heartbreak.  Each day I learn to live in the world with the pain and heartache of losing my sons.

As painful as that day was and as painful as everyday since has been, today I will celebrate Nathan's life.  Thanks to Jesus, our Savior, my son lives in heaven.  I praise God that Nathan lives in heaven waiting for me to join him one day.  Through my sorrows I have the hope of meeting him and spending eternity with him. 

Today Tom and I will take the day and celebrate Nathan's life.  We went to the Ann Arbor Arboretum to visit the tree planted in memory of Nathan and all the lost babies at U of M hospital this year.  We spent our day giving thanks to God for our precious son.  We gave thanks for the beauty He created in the Arboretum. 

This is the tree tag for the tree planted for Nathan last month.

 

 Here I am with the tree!

Here is Tom with the tree.

As we give thanks we look to the future.  Tom and I do not know what God has planned for us and we do not know where to go from here.  As we celebrate today, please keep Tom and me in your prayers.  We need to feel God lead us to a decision for our family.  We need God to show us the path He has planned for us. I want to know that Tom and I are on the path He has planned because His plan is far greater than mine.

For my thoughts are not your thoughts, neither are your ways my ways, saith the LORD.  For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.
Isaiah 55:8-9

Praise God for His faithfulness in giving us our gift!

The Gift of Answers

Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.

Mark 11:24

God is good!!  He may have timing I am not fond of, but He keeps His promises and answers our prayers.  After a long, painful year last year, Tom and I wanted nothing more than to find a cause for what happened to Grant and Nathan.  We wanted answers on how to move forward with having a family.  God has answered us!!!

Yesterday I had an appointment with a specialist from U of M Hospital.  Tom and I went, having low hopes of getting any useful information.  We arrived early, checked in and sat in the waiting room.  We did not wait too long and were called back to a room.  That is where I almost broke down many times waiting for the doctor to come in.  I did not know what to expect and I was so nervous. 

After what seemed like eternity, Dr. Ramira came in.  First, she apologized about not being prepared for the appointment, but she did have the autopsy results.  She said some other stuff, but eventually got to the point.  The diagnosis of the autopsy; Lethal Multiple Pterygium Syndrome (LMPS).  Never heard of it?  Well, neither had the doctor (that's why she apologized for being unprepared).  What we do know is that we FINALLY have a diagnosis. 

LMPS is genetic.  It is either autosomal recessive or X-linked.  If it is autosomal recessive that means both Tom and I are carriers and we had the unfortunate pleasure of having two children in a row with the disease, but it will not happen every time.  If it is X-linked, I am the carrier and LMPS will only affect our boys. 

For more information on the syndrome you can google it or this link gives a summary of LMPS. 
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=33108
Remember if you google it, Multiple Pterygium Syndrome has different types.  The type Grant and Nathan had is the Lethal type NOT Escobar.  Most information you will find is on the Escobar type and is not what Grant or Nathan had. 

I want to thank everyone who has kept us in their prayers during this past year.  We are so blessed to have such great family and friends.  I also want to thank our doctors and especially Dr. Mason Barr (the doctor who performed the autopsy) for working so hard to find a diagnosis for us.

Tom and I still have a long road ahead of us.  We would like you to keep us in your prayers as we continue testing and talking with doctors about our options for our family.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.   And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

Praise God for His faithfulness in giving us our gift!

One Year Ago Today...

One year ago today... I was experiencing the worst pain of my life.  There are not many people who know the sort of pain I am talking about.  I am not talking about any kind of physical pain. The pain I am talking about has nothing to do with the fact that I was in labor or put on medication that increased the pain of my labor.  I am talking about the pain of losing a child.

There is no pain compared to the pain that comes after losing a child.  A year ago today I held our baby, Grant.  I hugged him.  I kissed him.  A photographer came and took photos of him.  Then, after a few short hours, I had to say goodbye.  Not the "see you soon" kind of goodbye, but the "see you in heaven" goodbye.

A year has passed and the pain is still as real and sharp as the day it happened.   That day changed my life forever.  I am no longer the same person I was over a year ago.  Losing a child has changed me.  Losing two has turned my world upside down.   I cannot be as happy as I once was.  I will always feel that sadness.  I will always feel as though I missed out on something.   I have come to terms with the fact these feelings will never go away.  I am beginning to learn to cope with these feeling I have daily. I feel as though some of my coping has been in bitterness.  I don't want to be bitter, but I don't know how else to be right now.

This past year Tom and I had to try to understand the fact we may never have our own family.  With all of the medical advancements in the 21st century most people never face this anymore.  I never thought this is where we would end up.  I never thought this would be the battle we would face.

Every day of the past year I have needed to seek God more than ever.  I have prayed harder, longer and louder than ever before.   I have been down on my knees screaming, crying, begging and pleading with God.  Despite my fervent prayers, my anguish has not subsided and my dream of a family is nowhere in sight.  

Not only have I been praying more, but I have been seeking God's word daily.  Without His Word I would be utterly lost.  Most days I have to cling to every word just to make it through the day.  Each verse helping me in a different way.

Psalm 121:1-2
I lift up my eyes to the hills,
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.

Mathew 11:28-39

Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.

Only in God will I find rest.  Only in Him will I get help.  The past year has been a struggle.  Each day brought new challenges, new feelings.  Learning to let God take the burden for me is incredibly hard.  I feel as though it is my burden to bear, yet God wants to take it from me.  Why won't I let Him?

Jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Isaiah 55:8-9
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
“As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

Wow!  That is a bit of scripture that has been hard for me to swallow.  God has a plan for my life and as much as I would love to plan every minute of my life, His thoughts are not my thoughts.  His ways are not my ways.  He knows what is best for my life and what I need.

Romans 8:28
And we know that for those who love God all things work together for good

Proverbs 16:4
The LORD works out everything for his own ends--even the wicked for a day of disaster.

Every day I must remember these verses.  I must remember that God uses everything for His glory.    He will use my sorrow, my devastation, and my hurt for His glory.  I thank God everyday for the gift of my two sons.  The gift of my sons changed my life forever.  I don't know what God has planned for us, but I know it is for his glory. 

Praise God for His faithfulness in giving us our gift!

Right on Time

I love how God shows us things when we need to see them!  As I was doing my daily bible study for the Beth Moore Bible study I joined on Monday, I was lead to a verse in 2 Timothy.  There on the opposite page, was a highlighted verse.  I have no idea when I highlighted it or why.  I did not think I had heard the verse before.

But you should keep a clear mind in every situation.  Don't be afraid of suffering for the Lord.  Work at telling others the Good News, and fully carry out the ministry God has given you.
2 Timothy 4:5

Finding this verse made me smile.  I need to remember to keep a clear mind, not fear my sufferings and continue to trust God has a specific ministry He has given me to carry out.

Praise God for His faithfulness in giving us our gift!

The Kindness of Strangers

Tom and I have been blessed by our friends and family the past year with everything we have been through.  Our friends and family have been there for support, sent prayers, food, cards money and love to us the past year and we are very grateful and thankful for everything they have done.  But Tom and I were surprised by the kindness and generosity of strangers.

On Christmas Eve, Tom and I returned home from celebrating Christmas with Tom's family in Kalamazoo.  I went in the house as Tom got the mail.  Tom came in with a big package that was stuffed in the mailbox.  I recognized the return address as a friend I met online.  I belong to an online support group for women who have had a miscarriage, stillbirth or infant loss.  One of the women had sent Tom and I a package. 

We opened the package and there were four wrapped gifts and a card.  I opened the card and read it first.  It was not just from one person but from almost 40 people form the group!  Tom and I opened the two biggest gifts first.  They were both Willow Tree figurines.  They were both angels to remind us of our angel babies.  The next gift I opened was the smallest.  It was a necklace made by one of the women from my group.  On the outside is an angel.  When it was opened up there is both Grant and Nathan's names next to the day they were born in heaven and their birth stones.  It is so beautiful.  I wear it all the time.  The last gift I opened and began crying immediately.  They had given us $350 in Visa gift cards. 

Tom and I held each other and cried.  We have never been so humbled are peoples' generosity.  Tom kept saying that they had done too much, given too much.  Women that we have never met care so much about us.  We are in awe of those women and we want to thank each and every one individually for your kind gift.  A big thanks to Amanda Vosburg for putting this all together. Surely God will bless all of the women for giving to us so generously.

In all things I have shown you that by working hard in this way we must help the weak and remember the words of the Lord Jesus, how he himself said, ‘It is more blessed to give than to receive.’
Acts 20:35

Praise God for His faithfulness in giving us our gift!

My Desires

With Christmas just having passed, I have been thinking a lot about Jesus, as I am sure many of you have.  I have been thinking about the sacrifice Jesus made for us.  It is hard to think that Jesus knew what was coming and did not run away.  I can not understand why He would die for me, yet He did it anyway. 

When Christmas time rolls around everyone asks what I want for Christmas.  This year what I truly wanted no one on earth could give.  I wanted to see my two babies again.  I wanted to hold them and kiss them like every other mother gets to do, but I could not get that for Christmas.  Instead Grant and Nathan spent Christmas in Heaven with Jesus.  It is unbelievably humbling to know that because of the sacrifice Jesus made for us, Tom and I will be in Heaven holding our sons again one day.

Jesus already gave me the only gift I wanted this Christmas.  He was sacrificed so I could be with Grant and Nathan in Heaven.  After thinking about what He has already done for us I feel like I could never ask for anything more.  There is so much more I want.  I want to have a family with Tom.  I want to live a Godly life with a large family.  My list could go on and on.  I began to feel guilty for wanting more.  How could I ask for more when God already gave me the greatest gift of all, eternal life.  I am being so selfish asking for more than this, aren't I? 

I struggled with this for a bit.  Why was I asking God for a family?  He has already given me more than I deserve, eternal life in Heaven.  In a way I was happy to know that when I leave this earth I will be with God and my boys, but I was struggling with the fact that this may mean I may never have a family here on earth. 

I turned to the Bible for answers to the way I was feeling.  This is what I found...

Delight yourself in the LORD and he will give you the desires of your heart.
Psalm 37:4

Did I read that right?  I have read this verse many times before but does this mean that not only did God send His son to be sacrificed for our sins, but He also wants to give us the desires of our hearts?  Really?  God gave me the gift of eternal life with my sons PLUS  my heart's desires.  This is very overwhelming!  God has given me the desire for a family and I know He will fulfill this desire.

Praise God for His faithfulness in giving us our gift!