Thursday, August 22, 2013
-Blessing Through Sorrow: A List of all that Went Right -As part if my grief I have been thinking about all the amazing blessings surrounding my sorrow. A fellow angel mom recommended for me to do this when Im feeling down. I have decided there are so many blessings through my sorrow that I could separate them into three categories: pregnancy, lifetime, death. -Blessings During Pregnancy: 1. Jack made it full term. 2. The nurses and doctors at our new hospital were amazing 3. I had the support and prayers from my regular OB to move on to the high risk group at 30w. 4. We found a hospital who helped educated us, support us, and allow us to make the decisions. 5. We got pregnant while even using birth control ;) which means Jack was really REALLY meant to be. 6. My pregnancy was just like the other two 7. We knew of Jack's diagnosis at twenty weeks which allowed us to prepare our hearts and minds, but not having had prepared our home (if I had gotten a nursery all ready that would've been more painful after) 8. We got to see Jack on the ultrasound often 9. We got to do a 3D 4D ultrasound for free 10. I had support from other angel and trisomy moms 11. Family and friends supported and helped in so many ways 12. We were able to spend our pregnancy learning so much about Jack and meeting with so many different departments at the hospital for addition preparation 13. Everyone bonded with Jack in the womb 14. He was a BOY :) that's what we were secretly wanting 15. We found out about my pregnancy on my birthday 16. We got a beautiful new home during our pregnancy 17. Jack's siblings were excited for him to come 18. I didn't gain quite as much weight with Jack as I had with Keith 19. Being pregnant in the summer was not horribly hot this year - I got to go swimming lots too 20. Gparents were able to watch the kids for two days after the shock of our diagnosis so we could grieve alone. 21. People sent cards, meals, emails, messages... 22. My blog allowed me to connect and vent and even inspire. 23. My friend took beautiful maternity pictures for us. 24. We felt prepared and educated as much as was possible before meeting Jack -Blessings of a Lifetime: 1. We read a special children's book to Jack 2. All of Jack's grandparents and aunts and uncles got to meet and hold him. 3. Jack's siblings got to spend time with him 4. We got tons of amazing pictures during delivery and our stay 5. Jack came out crying! 6. Jack didn't need lots of medical intervention when born 7. We were able to confirm Jack's brain and heart issues right away which allowed our care decisions to be clear and unwavering. 8. The nurses and doctors were amazing. 9. We got to take Jack to the chapel 10. We got to take Jack out into God's sunshine 11. We were the only mommy/baby pair in the Fetal Health Center so we got tons of love and attention 12. The CSection went well and didn't have to be an emergency. 13. Mommy and daddy got to see Jack open his light blue eyes 14. Daddy and Briana (photographer) got to be right there with Jack in the OR the whole time I was being sewed up. 15. Uncle Evan watched the kids so the grandparents could all be there when Jack was born (and my dad got there that evening and Jack was still doing awesome) 16. Jack's two oldest cousins got to meet him 17. Jack had beautiful black hair and soft soft skin 18. We got to feed him all of his meals and the NG tube wasn't difficult to use 19. JACK GOT TO STAY IN OUR ROOM WITH US HIS ENTIRE LIFE - BEING HELD AND SMOOCHED THE WHOLE TIME 20. Jack weighed more than five pounds 21. He liked his passie and looked so cute with it 22. Jack loved laying on my chest 23. We got to sing to Jack lots 24. Chaplains from our church came to pray over him 25. Some friends were able to come meet Jack 26. Jack's daddy baptized him 27. We got a sweet video of big sissy singing to him 28. Jacks big brother liked him and kept saying "baby baby" 29. Our hospital had no visiting specifics so family could be there all night. 30. Little pieces is Jack reminded us of his big sister and brother each 31. Gparents were able to care for our older kids for four days in their own home. 32. Jack loved laying on my chest and hearing my voice. 33. God helped me safely they my surgery. -Blessings Even in Death: 1. We were able to spend the most time possible with Jack while in the hospital before we left to go home. If Jack had passed early in our stay we would've been left without him and still there. Jack stayed with us for so long that we even had Papa go get his car seat all washed and ready for the next morning's trip home. This was a struggle for us. We knew Jack was dying and we preferred for it to happen in our arms and not in the car or in front of our children. So the fact that we were able to be with him for our whole stay, but not have to attempt to load him up and have him pass in the elevator or garage was a blessing to us. 2. Jack passed away during one of the only times that all six grandparents were at the hospital. 3. Our older children happened to be at the hospital, but thankfully were not in our room. 4. Jack passed a little after seven pm so all of his and my day and night nurses were there at shift change to give tears and hugs and say goodbye. 5. We were not terrified like I always imagined me to be 6. After Jack passed to Jesus we got to continue to hold him for five more hours and do prints and molds while we waited for the funeral home. 7. I didn't have to hand my son over to the morgue or security, but rather my dad. 8. Jack didn't have to go to the morgue - the funeral home picked him up at midnight on a Saturday 9. Jack didn't fuss or suffer when he passed. 10. Our beautiful friend Courtney figured out that Jack had an amazing connection with the perfect biblical number seven. We found out we were pregnant on 11-17, found out about Jack's troubles on 3-7, he was born on 7-17, lived for 77 hours and 7 minutes, and passed on 7-20 at 7:02. 11. Jack's memorial went well with so much love 12. Jack's clothes still smell like him 13. We have a beautiful big box full of his things 14. The urn is beautiful and has space for us 15. After we handed his body away our nurse brought two hospital beds in and we both slept (drugged) the whole night before getting up and going straight home 16. Our three year old handled us telling her fairly well 17. Grandmas were able to stay with us for a few weeks after 18. Daddy got a week off 19. Friends brought us dinner for over a month 20. We got hundreds of cards in the mail and each one made us feel special 21. We have each other and Layla and Jack to keep us going 22. Our pastor met with us three different times 23. Our funeral home offered us big savings 24. Some of my fellow Trisomy moms visited me or sent me memorial gifts 25. The hand and foot molds turned out amazing 26. Our entire family has pieces of Jack that they carry with them each day now and forever 27. Jacks story will help others in some way, I just know it 28. There is more to come for Jack's impact 29. Looking at Jack's pictures brings me happiness and not sorrow 30. Jack is now in the arms of the only one who loves him more than we do. I feel like I could continue on in all three areas some more. So perhaps I shall add more later, but for now, I realize I am blessed.
Tuesday, August 6, 2013
Saturday was a very difficult day. I know they call it a "life celebration" and we are so very very blessed for having our boy, but it still felt so very sad. So many wonderful friends, family, and nurses came to celebrate Jack's life and I will forever appreciate and treasure those beautiful names in his guest book. There are some who couldn't come and some other angel patents who have asked about planning their own and so I thought I would share the specific events of our memorial...
Order of Worship:
-Piano Hymns - played by my husband's brother with slide show scrolling jack photos as people walked in
-Opened with a Vocal: 'In Hope- Chapman' - sang by a close friend of ours
-Call to worship and prayer from our dear pastor
-Old Testament Lesson: Ecclesiastes 3: 1-14 read by my sister
-New Testament Lesson: 2Corinthians 4 taught by my brother
-Grandparent Reflections: each of our parents shared thoughts or prayers about their sweet grandson
-One More Day song
-I read the children's book 'On the Night You Were Born' because I had read that to Jack a few times and it was our special book to him
-My husband spoke of thanks for our support as well as spoke on his son's strength and spirit
-Video Slideshow with 'VanMorrison's Brand New Day' that our photographers assembled of pictures of Jack
-The word of promise and hope from our pastor
- A triumphant feeling piano piece that my husband's brother played
- benediction from pastor
- receiving line to hug on momma and daddy while music and pictures of jack played
- cookies and coffee to follow
Specific Moments Looking Back:
-HOSPITAL STAFF: There were a handful of nurses that came to the service. This made me cry more than anything. When I see them I feel Jack. I think of Jack. I remember Jack. They were our lifetime with him. They were part of his story. They delivered him. They held him. They helped him. They loved on him (and us!). And they were also there when he grew his wings. God sent them to us. I know it.
Before we knew we were delivering at a new hospital, where Jack would be treated as a patient, I had prepared a letter for my nurses in the event of a still birth or very short life. The discrimination our first hospital gave us made me feel the need in my letter to beg the nurses for kindness, respect, and to treat us like any other family because they were in the presence of God. God thru his angel. HOWEVER, once we switched to the Children's Hospital I knew that letter was no longer needed. I knew our nurses would treat Jack with respect even though he was different. I remember our first ultrasound at our new hospital - the sonographer talked baby talk to the screen and said hello to our sweet boy and smiled at the cute things he would do. She didn't ignore or not document his special needs, but she didn't speak only of his differences. She treated him like the sweet babe he was. I adore that staff. That staff made our four days what it was. They made it beautiful. God shined His spirit down on that place so that we may see His blessings while we felt the pain. We were allowed to be as happy as we were sad. I have a vision and a mission to give back to that unit in memory of Jack and in honor of the staff. God hasn't placed the specifics in our hearts yet, but we know it'll come.
-RECEIVING LINE: So many times in my grieving I have wanted to hide in a hole to feel safe and I was worried having a receiving line would be too much for me to bare. However, it did not feel that way at all. Quite the opposite. All those hugs and tears made me so proud of my boy and my family and friends. I encourage others to consider an open service or even open grieving. (Such a this.) The response and support can be such a comfort during an empty time.
Picking Up 'Jack' From the Funeral Home:
This is not a topic Im comfortable talking in detail about yet. Id love other angel mommies to feel free to reach out to me if they need to discuss this with someone. I CAN say the urn was beautiful and my husband and I went together. I held the urn upon my lap. It was horrid and emotional. Not how any parents should have to take their baby home. Many more feelings that I may or may not decide to confront. (Friend Warning: I do not want to discuss this is person.) My heart is with any other parent that has had to do this.
We have a wonderful Neo that has answered so many questions and shared so much of his time with us and we really appreciate that. We value his thoughts and opinions. I got an email from him confirming the post birth chromosome test results for Jack's Full Trisomy 13 and he added a note to say that Jack's blood type came back as B-POSITIVE and that perhaps that was a nice message about Jack. ;)
What to expect from my future blogs??
Oh I don't know... Im sure there will be a fair share of grieving details and remembered Jack moments, mixed in with moments about my older two kids. Id also like to start praying about how God wants me to honor Jack's memory with a project or mission. Id love for you to keep reading and commenting and sharing your life with me as well. xxxxx
Monday, August 5, 2013
I want to start today by saying thank you. Thank you to everyone who offered us a word of encouragement, or lifted us up in prayer, sent a card, a meal, or offered to help in any way. I say thank you because that’s all I can do at this time. Those words alone are entirely inadequate to express the gratitude Ifeel because I am truly overwhelmed by the outpouring of love we have experienced over these past months.
In mid-April Rachel and I had a meeting with Patty at Alexandra’s House. We talked about Jack, what we could expect, what worries we had, what preparations we might want to make. One of the things Patty told us was that Pope John Paul said that when the soul is pierced by tragedy what comes out is love. When I heard that I thought, I hope that’s true, because at the time I wasn’t sure how I would be able to cope if and when Jack passed. That thought of love emerging from tragedy stayed with me and I thought about it often until I realized it really was true. I knew it was true because of you. Friends, family, acquaintances, and people we have never met were hurting for us, for Jack, for themselves. And your response to that hurt was love.
So you didn’t just feed us a meal, you didn’t just get us through another day, you gave us the courage to find strength in ourselves because we knew we were not alone. Thank you.
This copy of the New Testament belonged to my great grandfather and it was given to me by my grandmother last summer. I don’t think she gave it to me for any particular reason other than she thought I would like to have it. Inside the front cover she had pasted the Upper Room devotional from the day my great grandfather passed away. The verse for that day was II Timothy 4:7, “I have fought the good fight, I have finished the race, I have kept the faith.” Late Saturday afternoon in the hospital while I was changing Jack he took a deep sigh and threw his fists above his head. This verse came immediately to mind as Jack struck this triumphant pose.
He could have given up easily so many times, and no one would have thought less of him for it. We spent so much time, often every waking hour, focusing on making sure Jack was loved, but in the moment I didn’t realize that he was fighting so hard, not for himself, but for us. And in that way he was an example of Christ’s love for all of us. I am humbled to have been in his presence for those three glorious days, let alone to be able to call him my son.
May we each take Jack’s bravery, selflessness, perseverance, and courage with us every day.