Wednesday, May 25, 2011

Wednesday

Today we met with the doctor concerning the pathology report that indicated a balanced trans location of chromosomes. I have a better understanding of what the report meant and I have a deeper meaning that it all does not matter anyway. God is ultimately in control in my world and genetics really don't matter. Our docs assistant called us back this afternoon and our insurance would cover the needed lab work to find out for sure if we are carriers of this trans location. With a balanced trans location people can be healthy and have no known issues. However some peoples bodies can not recognize the trans location which would result in a miscarriage. Our doc explained it like this; our 46 chromosomes are like a novel, 46 chapters and someone with a balanced trans locations novel might read 1,2,3,5,6,4,7,8,11,13,9... where someone without this would read in numerical order. As long as all the pieces are there most cells can figure it out but like I said if not this would result in a miscarriage. Now all of this was very interesting but it still does not matter. First God is in control. He provides the strength, hope, love and mercy for my life. Second,my sweet son is still not here with us. All the test, reasons or no reasons, he is gone to be with Jesus. We are trying to finalize his headstone; what will it say? will it ever be just right? As I was researching and finding all these sweet stones, I overcame with emotion. There is something that just does not feel right, we should not be looking up stones for our son. I had to stop. Another day. I know I have to do this, this is one thing I want done as soon as we finish paying for it. But not today. I learned of a family in Kansas that had their daughter last Monday who was born with anencephaly. She just passed away last night. 8 days! Most anencephalic babies do not even get the opportunity for one minute because parents choose to terminate their pregnancies. 8 days. My heart breaks for this family. My heart breaks for all families who have to say goodbye before they even begin to say hello. My heat breaks for my family. Our journey has not ended, our lives are still being transformed though this one sweet little life.
"But I have trusted in Your mercy; My heart shall rejoice in Your salvation." Psalm 13:5

Tuesday, May 24, 2011

Life Walk

Saturday June 18th Corey, the kids and I are walking in the Life Walk. We believe that life is a gift from the Lord, creator of everything. I have a better understanding of what a special gift a child can be. How perfectly knitted each child is because of my Elias. He was truly a gift to my heart, my family and friends. I hope that others can see that choosing life can enrich their hearts and minds more then they could have every imagined.
Please consider donating to our family to benefit Niles Pregnancy Care Center. Thank You!

More Blessings

Corey and I are humbled frequently in how people have reached out to our family. This last week we received a check in the mail with no return address or signature on the letter. It simply said they knew we could use the money in lots of different ways and they were praying for us. It brings tears to my eyes as I type. This is something that we never thought could happen. But once again God has humbled me to show me how big He is. We are so Blessed, really. And to this person or family or whoever it might be I am hoping you might be a reader-THANK YOU! We are so close to paying off Elias' headstone-amazing!
Here are the lyrics to Laura Story's song "Blessings". Its the last song on my play list on the bottom of the page. This song seems to fit my life in so many ways.

We pray for blessings
We pray for peace
Comfort for family
Protection while we sleep

We pray for healing
For prosperity
We pray for Your mighty hand
to ease our suffering

And all the while
You hear each spoken need
Yet love is way too much to give us lesser things

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness
We doubt Your love
As if every promise from Your Word is not enough

And all the while You hear each desperate plea
Lord, that we’d have faith to believe

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not
This is not our home

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

What if my greatest disappointments
Or the aching of this life
is the revealing of a greater thirst
This world can’t satisfy?
And what if trials of this life
The rain
The storms
The hardest nights
are your mercies in disguise

Lets See

I am not even sure where to begin. Life is happening at a high rate of speed.
For about the last four weeks I have been waitressing at a small mom and pop restaurant called Pasquale Rullis. I worked there for about five years before I had Ethan and have helped out here and there since. They are a great family to work for and with, I feel like a part of the family. I was going to be only working every Thursday for five or so hours. Well they have needed some extra help and I have been working two or three days a week. Its been a little adjustment for me. Corey and I talked and prayed about me doing some sort of little job. The extra money is always nice and I felt like I needed to do something. However going back to "work" has been a little harder. Its not many hours but I have been with my kids at home for the last three and half years and now not being with them all the time has been a change. I think the kids are loving the extra time with Dad. After this week I am back to only Thursdays. Our June calendar is filling up and I really will not be able to pick up extra days.
Other then working we are doing life. We celebrated some birthdays on Saturday and watched some friends kids in the evening so they could go on a date. It has been busy but good. My mind does not get easily distracted or wonder when we are busy. I feel like I am just going through the motions this last week. This last week marked 3 months since our sweet Elias was with us. Has it been that long since I last kissed his sweet cheeks? Tomorrow we meet with the genetics doctor. Praying we have a better understanding of everything.

Monday, May 16, 2011

Happy Sad

Yesterday was a sad day. Today was a happy one. Its amazing how this roller coaster is so crazy.
I still did not sleep very well last night but woke up ready for a fun day with the kids. We started at the doctors office because Ella has a little eye blockage. She has had a blocked tear duct since she was born and we just saw an optometrist last week where he suggested do a quick, easy surgery to open the duct. She has to go under anesthesia, it just seem like a lot. Corey and I are going to wait a few weeks and see how we feel after that about it. We got more eye drops today and hoping her eye will look better tomorrow. After the doctor we headed home to pack a quick lunch, grab a stroller and head to the zoo for an impromptu zoo and picnic outing with our friends. It was a beautiful sunny day, a little breezy, but great for a stroll in the zoo. The kids had a blast, loved having a picnic and playing on the playground. We rounded out our afternoon with naps. We grilled out for dinner and enjoyed Dairy Queen for dessert. We stopped by the cemetery on our way to DQ and lately every time I think of Elias my arms physically feel heavy. I can feel him in my arms. The cemetery looks beautiful with lots of flowers, mowed green grass, spring has arrived.
Last week we had an appointment with our delivery doctor regarding a tissue report they had done on the cord and the results. The results were a surprise when we found out a few weeks ago. The pathology report showed chromosomal abnormalities on three chromosomes. These abnormalities had nothing to do with his anencephaly. Our doctor recommended genetic counseling or pulling of Corey and my chromosomes to see which one of us could be a carrier. However there is a chance that we are perfect. The doctor said she was very discouraged and shocked to get this report. Us having two healthy children and no known genetic disorders. We will meet with a genetic counselor next Wednesday for a consultation. I am really trying to process all of this. I ultimately know that God is going to give me the grace, strength and hope to get through whatever lies ahead. Corey and I are constantly in discussion and prayer about more kids and what that might be for us. If we decide that we are feeling lead to have more kids, we will try to have more kids. I know that deep in my heart I do not want another anencephalic baby or any other defect, I want a healthy child but that might not be in my story. God might not choose to bless us with more children either, even if we think we are being lead to have more children. My biggest prayer is to not let genetics get in the way. We may decide to only meet with the genetics and not follow through with any blood work. We do have some questions that our doctor felt that the genetics would be better to answer. God knows my genetics, He knows my past and my future, He is the creator. How awesome that I can give these burdens to Him and He has and will carry them! I have been having to lay down my heart, my sins, my worry, my anxiousness daily but I give them to Him. I can not do this alone.
"If anyone desires to come after Me, let him deny himself, and take up his cross daily and follow Me." Luke 9:23

Sunday, May 15, 2011

Kleenax and a Candle

My emotions are going crazy. I am not sleeping well, not feeling well. I am sad. I am overwhelmed with loss and pain. Its hard for me to see close friends and not cry. My heart is crying and I can not hide it.
I think with time things will get easier but it seems right now that it is getting a little harder. But I think that is how grief works. The loss of my son will never be easy or without heartache but healing and restoration will cover my wound. Its hard for me to even verbalize how my heart is so heavy with tears that all I can do is cry them out. I am thankful for my "Kleenex and candle" friends. No words even need to be spoken with these friends. I can just lay my head on their shoulder and weep. They offer me the encouragement and love I need. I am forever grateful for these friends.
"We all need Kleenex and candle friends when we suffer loss. Compassionate companions who give us permission to cry and offer a Kleenex or their tears. When the darkness of discouragement comes they encircle us. Our heroes of hope light the way to brighter tomorrows and to the One who is truth and our eternal encouragement. And at the right season, we can pass on what we have received to others...a Kleenex and a candle. "~Kathe Wunnenberg
Even when I think no one understands my pain, my heartache, my sadness, my loss, my crazy emotions there is One that does. I am not alone. God is here with me. He understand my pain and suffering. He knows what I am thinking and feeling before I ever say a word.
"Blessed are those who mourn. For they shall be comforted."Matthew 5:4

"And not only that, but we also glory in tribulations, knowing that tribulations produces perseverance and perseverance, character and character, hope."Romans 5:3-4

Wednesday, May 11, 2011

20 years

Today has been 20 years since my dad passed away. 20 years...has been that long?
I so badly wish he was here with us.
I wish I could of known him more.
I wish I knew all of his favorites: movie, song, book, drink, food. What he thought about what our world is going through. War, economy, unemployment. Give me advice on our yard, house, just plain old life. I wish our children could meet him.
I remember my dad- the fisherman, the worker, the authority,the tickler, story teller. Despite not knowing him on an adult level being only 8 when he passed away. I know him as my Dad, as a little girl should. Sitting on his lap, his beard and his love for his family.
We miss you deeply!!!

Saturday, May 7, 2011

Baby Dedication

Tomorrow is another holiday, another day without my precious baby. Kids are singing at church and this will be the first time Ethan will be singing. He has not been so hip on practicing but we are really trying to encourage him. We shall see how it goes. It is also baby dedication at our church. This past Sunday our children's ministry director asked if we would like to have Elias be part of dedication. Once again I felt so humbled by being able to share my Elias in this way. She felt like we were a true picture of giving your child to the Lord and how great to start the service off by sharing Elias. It stings, it hurts, it causes tears. Despite being so appreciative of being able to have Elias be a part of what he should of been a part of if he was here with us. It also is a deep reminder that he is not. He is in heaven, He is made whole, He is in the perfect place. The emptiness that has been left here in my earthly heart is what seems unbearable at times. Walking this valley, experiencing these holidays, what would have been events; is leading me to restoration and healing. Understanding that Elias is exactly where he should be.
Here is the verse and picture we picked for dedication. We used this same verse in his obituary. Perfect verse and great reminder that God knows everything and has every detail in His hand.
"For You formed my inward parts; You covered me in my mother's womb. I will praise You for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well. My frame was not hidden from You, When I was made in secret And skillfully wrought in the lowest parts of the earth. Your eyes saw my substance being yet unformed And in Your book they all were written. The days fashioned for me. When as yet there were none of them."
Psalm 139:13-16

Thursday, May 5, 2011

For Real?

Its amazing how the reality that we lost our sweet son just a mere 11 weeks ago can come raging up without any notice. Today it happened. I knew we were going to visit the cemetery today, I know I always cry but today was different. I missed last week because as I prepared for the spring tea talk and everything else going on I was not able to get there. Today my arms ache in a way I have never felt. Today I relive the few hours right before he passed.
I could not decide what I wanted for dinner from the hospital. As I contemplated my sisters, mom, Corey and I decided to order out. I decided Rulli's sounded excellent, what comfort food. As we ate dinner we just enjoyed the company of Elias in our arms. He had been so peaceful all day long; eyes shut, no cries, not really any movement. The only time he really moved was when we tried to put a new hat on him and when bathing him. As night entered I kept thinking how I thought I never would have had this much time with our son. It had been such a peaceful day. We were planning on taking him home the following day if he was still with us. I think I was a little naive or not really allowing myself to know that he would soon be gone. I just kept loving him and holding him as if he were to never leave us. My sisters and mom were going to head home, it had been a long day and an early morning. As I went to go wash my face, brush my teeth, try to get cleaned up there started to be a change in Elias. His left eye had started to open just a little bit but still no movement or cries. At that moment I could feel my heart starting to break. I took him from my sister who had been holding him and just started to rock him and hold him tight. My mom and sisters left the room. The nurse had checked his heart rate at around 9:15 and it was 93. It had been in the 120's all day and we knew it would soon be time for him to be in Jesus' arms. As I held Elias with Corey right by my side. We just prayed and sang. Around 10:15 Elias started to have little spasms. I just held him a little tighter, cried a little more, prayed harder that these seizures/spasms were causing no suffering, sang a little louder. His left eye was still opened. During this hour Elias only had maybe six or so seizures, can not remember for sure. But what I do remember for sure is holding his perfect little body in my arms, trying to make it easier or better for him. Around 11:10 ish the nurse checked his heart rate again and it was down to 43. We continued to pray, sing and adore him. Around 11:25 Elias' had another seizure but this seizure ended with a smile. A real smile from a sweet little boy who had shown no other facial expressions throughout the day. At that moment Corey and I knew he had run into Jesus arms, that he was made whole, made perfect. We called the nurse and she confirmed that there was no longer a heart beat. A second nurse came in and listened, there was no heartbeat. I held him in my arms all night. One thing I have always enjoyed with my little newborn babies is to nap with them. Well during the day when Elias was with us I did not have the chance to nap with him but I did now. We made phone calls, said goodbye to my sisters and mom and settled in for the night. I held him, rested well with him in my arms. My journey had not ended as Elias passed but it some sense it was just the beginning.

Monday, May 2, 2011

I am Here

I have been wanting to blog for a couple of days now but life seems to have overtaken for the moment...
I had been asked to speak and share my journey with Elias at our spring tea woman's event at our church. This last week I spent time rehearsing and putting the final pieces together. I was starting to get nervous at the start of last week but as the week went on and I practiced; God just gave me the strength to share my story. It did not have to be the greatest message ever preached or be a some sort of earth shattering teaching. It was the story God had given me and carried me through. I was just he medium in which God's love, hope and redemption was shown. The morning was a great event and I was able to talk slowly and allow Gods words to flow through me. It was actually really fun sharing Elias with a lot of people who may not of known him before. Sharing my sweet child and how he has transformed my life in so many ways. Challenging other woman in their own walk with God. What a great day! What an amazing blessing!
Speaking of Blessings. Corey and I have and continue to be so blessed throughout this journey. Its amazing that when are least expecting, most needing God works out all the details. We have been trying to figure out how we were going to pay for Elias' headstone. With all the medical bills, car repairs, funeral expenses and just plain old life there has not been much left for what we were hoping to use for his headstone. We got a call last week from the funeral home letting us know that cost were going up on May 1st and that if we could try to get an order placed so we could lock in a lower price. Corey and I had already been talking about this trying to figure out a way to get one ordered. I want so badly for Elias to have the proper marking. We are never going to get to pay for new toys, clothes, books, food, cars, college, wedding for him, it seems like this is the least we can do to show him our love. So one day last week Corey and I decided on a headstone and Corey went to place an order. To lock in the price you only had to have 10%down, to have it made you have to have half paid for and for them to place it has to be paid in full. Well the reality is that we could not pay in full and we would make payments until it was. I was so sad thinking it could be months before this would be paid for and placed for Elias. How terrible that we his parents could not provide this right now for him. However our Heavenly Father provides exactly what we need. The following day at the spring tea I learned that the money from ticket sales would be donated to our family. My eyes fill with tears as I share this with you. I am not sure if it will cover the headstone or not but it will probably get us pretty close. Just as I worried, doubted, and felt self pity the Lord has blessed me. I am so unworthy, I was not thinking even closely that God would provide this money for us but He has. Why do I doubt? He knows us, He knows our needs down to every last detail.

Easter

Good Friday we spent at my sister Amy's coloring Easter eggs. Ethan had fun coloring the eggs, Ella was not so into it. We still had a two dozen eggs left and the kids were done. So my sisters, mom and I sat and finished. It was a great time for the kids to play with their cousins and hang out with the family.
Easter morning I had a very little basket for the kids knowing that both Grandma's were giving them baskets and my neighbor left some treats in our yard. My mother-in-law made Ella's dress, isn't it adorable? I did not get a very good picture of them together but at least there was an effort. Ethan has been taking pictures with his eyes closed silly boy-memories in the making!
Easter afternoon we went Corey's folks house. My mother-in-law also made all the other girls dresses out of the same fabric. Ella was not so into getting her picture taken but there they are; all the grand kids:)