What Mark-Jerzy is teaching me

     Never in a million years did I imagine we would have a baby with problems, not that it mattered. I had actually kind of hoped we would be blessed to have a baby with Downs Syndrome….Syndrome what at word.

Never did I imagine there even were other Syndromes, I always just heard the word “Downs” identified what it was and never really heard the second part. It was just a word you take for granted.

     Never had I ever imagined having a baby with a Syndrome, especially since we have 11 healthy children or that there is a whole world of people whose children have any one of the number of Syndromes. I have always thought how beautiful the children were and how much love the parents of these super special kids had.

Never in a million years did I even think about hearing, “we think your baby has a Syndrome”

Never did I think I would hear the words “a Syndrome incompatible with life”

Never did I know how much pain others have gone through……and are still going through

I never knew how small my love and compassion were and that is one thing Mark-Jerzy has taught me. I know that I would never want to live in the world I lived in before that was so blind to it and now I constantly think that there must be so much more pain out there in the world and that it is more real than I understand and I want to have compassion on people and love as God loves, because I don’t.

Mark-Jerzy is teaching me:

That God’s love is great, that His love is so “other”, so infinite, so much more than our human love.

 

That God’s love is incomprehensible and marvelous I knew and believed, but now I know that I do not truly know or truly believe as I should, but I want to. I want to love like He does.

 

Mark-Jerzy’s little coffin that Odilio and the kids helped with

That I can’t wait to spend eternity, only in part because Mark-Jerzy is there, but because the reality of God’s love and His love being so much more than is possible for a human mind to imagine, then going from surprise to surprise and marvel to marvel, wonder to wonder, and delight in His loving presence and His goodness is ever new.

      Because of Mark-Jerzy I have tasted a tiny bit more of our Loving Father’s Goodness and Love and I want more and I want to show it more. I want to walk in God’s Grace that allows me to lay aside my failure and sins and truly love.

  “Above all preserve an intense love for each other, since love covers over many a sin”

                                                                I Peter 4:8

Thank you Mark-Jerzy for all you are teaching me!

Thank You Lord for giving Mark-Jerzy to us for those 40 hours and all the time in the womb!

Thank you loving Father for being “Faithful to the end”

“The Lord carried you, as a man carries his child, all along the road you traveled” Deuteronomy 1:31 (Part 2)

A month ago I attempted to write a blog post about this past year and all I ended up publishing was the scripture verse above. There is so much to write about God’s faithfulness, so much I want to share, so much I don’t want to forget. When we left for Mexico earlier this Spring with thought it would take 4 or 5 days and 12 days later we arrived. It was a difficult and taxing trip with multiple blow outs on the trailer and truck, I was ready to go back home to Oregon so many times. It was a test of faith and it was rewarded by an amazing mission in Mexico. At the time I imagined this would be the hardest time of the year. Our God teaches us to remember the bad times in the Good and the Good in the bad. I never imagined that we would be IMAG0911lighting a candle tonight for Infant Loss Awareness month….

We are still processing all that has happened since leaving Mexico and the end of the pregnancy with so many Doctor visits, those wonderful 40 hours with our son…We know our loving Father is so Good, so many suffer injustice, the results of sin in the world are incomprehensible, but the Good News of Jesus Christ is that there is Hope.

Hope for Mercy.

Hope to give Mercy.

Hope to receive Mercy.

The Lord is patient and truly He carries us as we live in this valley of tear. Yes there are many good things here, but all will seem as tears when we arrive in the Joys of Heaven.

Lord, lets us never loose focus of the Good News and live it and share it so that many will enter your Kingdom, especially the lowest, the lost, the least. Let us see you in them and treat them accordingly.

40 Hours of Life

One week ago yesterday our sweet baby boy came into the world at 12:22 am and was baptized not long after that.

Fr. Denis came to the Hospital about 1 A.M. and performed the baptism

 

 
 The months of waiting, the last couple of months of wondering if the ultrasound would be correct……they were.  It all seems so incredibly fast now.  We found out that something was wrong with our precious baby eight and a half weeks ago.  At the time, waiting all of July for him to come felt long, it all seems like a blink of an eye now.  And then his forty hours of life….did it all really happen?

 

resting together after his birth
He was not able to nurse, but was comforted by NG tube feedings every couple hours

I really really really thought that he really really really would have a miracle in his little body.  Even though I prayed for God’s will and felt at peace before his birth about his death in my heart, I thought that if God only healed one thing.  If his heart was healed then they could do surgery on the other things.  If God healed his diaphragm then he would be strong enough for the other surgeries.  Every time I went forward to receive Jesus in the Eucharist, I felt like the woman who just knew that if she could just touch the edge of His garment she would be made well.  I knew that if I could just receive Jesus, He could make my baby well. I filled the freezer with easy things for the girls to make meals with so I could be in the hospital with the baby for as many weeks as it took.  We made a schedule so that life at home could have a routine that worked as Mark and I spent time with the baby and his needs.  Whatever it took, I was up to the challenge and as I held my sweet baby boy in the hospital as he was slowly passing away  I told him “I would do anything in the world for you. anything”.

What a joy to take care of Mark-Jerzy for the 40 hours

How do I go from missing his presence to being thankful that he is where I should long to be.  My heart aches and my arms are empty, how do I feel thankful for the precious forty hours that I held him, taking in his sweet newborn baby smell, kissing his little deformed hands and feet, telling him how much I love him.

I have been wondering why.  Not “why God did you do this to us?”,  But there seems to be so much purpose in his little life.  Purpose in the pregnancy.  Purpose in us being here in KC.  Why God, why did you give us him?  What is it you are teaching us?  His brothers and sisters who have been loving him since they found out that he was coming.  He gave the world Mark-Jerzy for forty hours. Why?  What is it that You are teaching us?

The kids singing with Jon during communion at the funeral mass

This is the song we listened to during labor, afterwards, Jon sang at the funeral mass, and continue to listen to.  Jesus, We love You  It would bless us if you listened to it.

      Mark and I have been reading Interior Freedom, by Jacques Philippe. On the day after Mark-Jerzy’s Funeral we picked it up and read the following:

       “It is natural and easy to go along with pleasant situations that arise without our choosing them. It becomes a problem, obviously, when things are unpleasant, go against us, or make us suffer. It is precisely then that, in order to become truly free, we are often called to chose to accept what we did not want, and even we would not have wanted at any price. There is a paradoxical law of human life here; one cannot become truly free unless one accepts not always being free!

To achieve true interior freedom we must train ourselves to accept, peacefully and willingly, plenty of things that seem to contradict our freedom. This means consenting to our personal limitations, our weaknesses, our powerlessness, this or that situation that life imposes on us, and so on. We find it difficult to do this, because we feel a natural revulsion for situations we cannot control. But the fact is that the situations that really make us grow are precisely those we do not control.”

Waiting for Mark-Jerzy

Two due dates have come and gone and still we wait.  Mama’s health looks good and baby is growing.

This is the first time that we have decided to find out if our baby is a boy or girl.  The kids have started to take bets on the gender of the latest sibling to come along and we just all had a feeling that he was a boy.  For the last 5 babies we have also waited until after they were born to name them.  There are always lots of debates among the children of what they want to name the baby, but ultimately daddy always says, “this is mom and dad’s baby and we get to decide”.   But it is always a mixture of what we all decide as a family.  The kids waited awhile to bring up the name Mark Jerzy to dad because he has never wanted to name one of his boys after himself.  The kids also wanted the name of Jerzy (and a few other names were debated about).  Jerzy is the polish name for Jerry (well technically George) of which is Mark’s father’s name but also it is the name of a polish priest who was martyred during the time of Communism in Poland.   Jerzy Poielusko  The kids have won out and the baby’s name will by Mark-Jerzy, but the debate is still going on if we will hyphenate it and add a third name.

We have had a lot of time to reflect and to learn.  Learning about trisomy babies has opened our eyes to a whole new world.  There are so many beautiful stories of families who have chosen to carry their baby to term despite the term “lethal syndrome” is told to them.  We’ve learned that one reason for the 20 week US is to check to see if the baby has any abnormalities so the parents have plenty of time to chose to abort before the third trimester.  Of babies who are diagnosed with t13 or t18, 90% are aborted in Europe and 75% are aborted here in the states.  What a fulfilled prophecy, lethal syndrome indeed.  Of those babies who survive 50% will die before birth.  Of those babies who survive to birth many more die with only 10% make it to their first birthdays.  However, many parents are not told at the time of birth that they can feed their baby, or that the baby may just need a little oxygen. The thought is these babies are not going to live anyway, so why treat them.  Now we are not even talking about extra measures like tracheotomy, or life-support.  We are talking about giving a new born baby milk instead of sucrose and water.  When they have an apnea episode sometimes that is all they need is a little oxygen.  Thankfully that mindset is changing as more t13 and t18 babies are surviving and living and the families admit that they would do it all over again to have that special child in their family.  Here is a website with more information about trisomy.

Mark-Jerzy has too many problems however, the hole in his diaphragm being one.  With that we are not sure he will even be able to take is first breath.  We are still praying for our little one, but we know that death is not our enemy.  We are so thankful for the life of this little one and if we must say goodbye as soon as we say hello, the thought wrenches our heart,  we trust in the goodness of our Father and we are so thankful for the hope of heaven.

The reading from the Office of Readings last Friday the 24th spoke to us both: 2 Corinthians 5:1 -10

his foot in 3D

We know that when the tent that we live in on earth is folded up, there is a house built by God for us, an everlasting home not made by human hands, in the heavens. In this present state, it is true, we groan as we wait with longing to put on our heavenly home over the other; we should like to be found wearing clothes and not without them. Yes, we groan and find it a burden being still in this tent, not that we want to strip it off, but to put the second garment over it and to have what must die taken up into life. 

This is the purpose for which God made us, and he has given us the pledge of the Spirit.

We are always full of confidence, then, when we remember that to live in the body means to be exiled from the Lord, going as we do by faith and not by sight – we are full of confidence, I say, and actually want to be exiled from the body and make our home with the Lord. Whether we are living in the body or exiled from it, we are intent on pleasing him. For all the truth about us will be brought out in the law court of Christ, and each of us will get what he deserves for the things he did in the body, good or bad.