Sonlight Garden

A Year Ago Today~ Remembering Thomas

It feels like yesterday, yet it feels like a lifetime ago. I went to Mass this morning. During the consecration I imagined my Thomas at the heavenly banquet. I felt him there, at the altar, even though I couldn’t see him. The Holy sacrifice of the Mass, when heaven meets earth. Where all of the Saints and Angels praise our dear Jesus Christ. This is now my bond with my baby.

This year has been tough. To be honest I have been anxious about this 1 year birthday and reliving it all. My mind goes to the day he was born, the joy we felt to see him and hold him and kiss him and then knowing we were soon going to have to say goodbye. The days following when my milk came in and I didn’t have my baby to nurse, that was one of the hardest things. I love to nurse my babies. I feel it is such a privilege that we as mothers are given. When I couldn’t do that it made the sting of him not being here all the more painful. Gosh, it was all just so hard. At times I felt like I just wanted to die.

But, you know what else came with the pain? Peace. I felt an overwhelming peace, an unshakeable peace, because I knew we were doing God’s will. Carrying Thomas, giving life to him, was right where God wanted us. It was one of those times where I pictured our heavenly Father looking down and smiling and saying “Well done good and faithful servant.” That was what got us through and continues to get us through.

I’ve gone easy on myself today. I’ve gotten so many wonderful texts of friends telling me they're thinking of us and praying for us. Those prayers mean so much. We are going to have a nice dinner together and have cake and sing “Happy Birthday”. We are also going to release some balloons. Tomorrow, the anniversary of his death, we will visit the cemetery, light some candles, and give our little saint some intentions to pray for.

My sweet baby boy, happy birthday. We love you and miss you. You have blessed us so much with your sweet presence in our lives. We are forever changed.

on grief and gratitude

 

(These pictures were taken a couple of weeks ago. Everything is bare now and not quite as green, it is definitely late November now.)

The pain comes in the quiet, when I am still. It is swift and hard and catches me off guard. At times it takes my breath away and causes me double over. I cry out “why?” I weep. I want my baby. I didn’t get to kiss him enough, or hold him enough, or look at him long enough. He is not here and I feel like part of me is missing. It sounds cliche but that is the best way to describe what I’m feeling. This grief is hard and raw.

 How do I combat it? What do I do when I start to feel sorry for myself? I become grateful. I start to list all of the good things. 

I did get to hold him. 

I did get to kiss him. 

His brothers and sisters were able to meet him and love him. 

Look at all of these beautiful faces around me.

When I pick Henry up he wraps his arm around me and pats my back, his other little arm wraps around my neck.

Amelia’s laugh

My husbands strength

The landscape around me

my list goes on and on....

 My grief slowly turns to joy. I take a deep breath and keep going until the next time, the next bit of quiet. I have to go through this. It is just part of it. It has only been 3 months but it almost feels like a lifetime ago. 

 I will continue to be grateful because our God is good and generous. Life is hard and messy, and yet beautiful. My God, and all of the blessings that I have will help carry me through. All grace.

 

 

Moment By Moment

Thomas's funeral Mass was last Saturday, the 24th. It was the most beautiful Holy Mass I have ever participated in. There were so many people in attendance. We were just so overwhelmed to see so many people there for Thomas. So many people there for us. Just one of the many, many, blessings of Thomas for us was how our community rallied around us. Right from the diagnosis at 9 weeks, everyone just started praying. Not only that, they gave of themselves. Whether it was helping us get this house together by painting or cleaning, or moving us into this house, or offering us a shoulder to cry on, they were there for us. They still are. I said in Thomas's eulogy that they were the hands and feet of Christ for us. They helped carry us this past nine months. We are humbled.

Also humbling, is all of you. Many of you who read this blog I have never met, yet you offered prayers for our sweet Thomas and your kind words of encouragement lifted me up. Our many dear friends in Florida whom we moved away from texted and called and prayed. You were still there for us, as you have been so many times in the past. We love ALL of you and pray for all of you.

 During Thomas's Mass I was looking at his little white casket and I heard a loving voice say "but he is not yours, he belongs to Me, they all do." And they do. My beautiful children, they belong to God. Our goal as parents is to get them to Heaven. To raise them for Him. To know Him, love Him, serve Him. He wanted another saint. He gave us the gift of Thomas for a little while. He wanted him and we knew it right from the start. I know this to be true. I really do. But gosh, I really want my baby! I have many, many tearful moments. At times I am filled with such tremendous sorrow. I miss him so much. I feel the comfort of our Lord during these times. I unite my heart to our Blessed Mother as she surely knows my pain. I cry out. I know my God will not leave me here. He will pull me through this. I just have to take it one moment at a time.

So how are we doing? I'm not going to lie. It has been an incredibly hard two weeks. But, as hard as this has been I can not imagine not going through this. I can't imagine not having had Thomas. The thought of that. The thought of never having had him. That, makes me cry. (like I said, I have been crying a lot.) We would have missed out on so much. God's Grace showered us abundantly. If we would have said no to Him, said no to His Will, we would have said no to all of the blessings and graces that came with carrying this cross. I think of the many mothers and fathers that say "no" and about all that they are saying no to. I then think of the cross that they carry now. If they only knew. I pray for them.

 

The Most Beautiful Day

I could never thank you enough for all of your prayers and kind words. Your prayers have sustained us. 

Im not sure how much of Thomas I should share here. I want to share him with you all because you all have prayed us through this. I want to share him with you because I want to show you just how beautiful and sweet he was. Although he had an imperfect body, he was the most beautiful baby. He was just so sweet. We love him so very very much. 

being weighed

"I see the face of God in your son."-Anesthesiologist

being baptized in the OR

"I am forever changed from having known you sweet little Thomas." -L&D nurse

proud papa

I wish I could remember what John Paul was saying here.

"You could have ended all of this pain a long time ago, but you chose the heroic unselfish route and gave him life!" - postpartum nurse

the little boys. I love this picture of my three little guys.

It was the most grace filled day. We went to mass together as a family. Good friends of ours who have twelve children took our eight back with them to their house after Mass and Terry and I headed to the hospital. We met with the neonatologist and spoke to him about Thomas’s prognosis. He was concerned that we wouldn’t make it out of the operating room with him. We expressed our concern about making sure Thomas was Baptized and they graciously allowed us to have our priest in the OR, and Father graciously agreed to go in the OR with us. My OB came in and we did an ultrasound to see which way Thomas was presenting. We all prayed together and my OB asked God to direct her hands. All Grace.

We went to the OR and I was prepped. When Terry walked in he told me the children had made it to the hospital and were waiting in the room. I breathed a deep sigh of relief. Soon we would all be together. 

Soon after my OB had started the surgery She was saying “Well hello there Thomas! Hey buddy!” She walked around to my side of the curtain and showed me my beautiful boy. He had a ton of hair, just like all of our other babies. She then brought him over to the warmer and he started to cry. It was the most beautiful sound in the world. They cleaned him off and Father went over and Baptized him. They weighed him which was 4lb and 14 oz. Then they brought him over to me and he looked me in the eye. He was so alert and sweet. I held him until they finished sewing me up. 

We went back to the room and all of the children were there. I will never forget that moment. They oohed and awwed and cried. They knew every moment we had with him was going to be a gift. That sweet little baby was passed around to each of his siblings and he was awake for all of it! Gosh, he was so strong. Father then said the rest of the Baptismal prayers and Joseph and Julia were made his Godparents. After the children had all gotten their fill of him we put him on my chest, skin to skin, where he stayed. Once he settled on me his heart rate and breathing increased and his color improved. He was definitely happiest on my chest. He almost always had his hand up to his mouth. Just like when he was inutero. In all of his ultrasound pictures he had his hands on his face. Always. When he was around six hours old we decided to give him some food. We didn’t want him to be hungry and we knew that some nutrition would help him. It did. His color further improved. He even made a dirty diaper!

The early morning feeding is when things started to change for him. His coloring wasn’t as good and we stopped after one cc of formula. We put him back on my chest and there he stayed until he passed away. Terry was rubbing his back, and we talked to him. Our sweet little boy.

He was treated with such dignity and respect and care. The hospital staff was wonderful and kind. I am forever grateful for that.

The proudest moment of my life was when I gave birth to this little boy. He has touched numerous lives. More than we will ever see this side of heaven. He is such a sweet little soul. Our Lord must have big plans for him to want such a sweet, pure, spotless little soul. We were graced with his prescence for a little while. We are forever changed. 

Please continue to pray for us as we try to go on without him. I can't imagine this, but we must. We miss him so much.

St. Thomas Joseph pray for us!

(Photo credits to the nurses in L&D and Julia)

It's Time

Today is the day. We are going to meet our sweet little boy later on today. Please continue to pray for us, I know you will. You all have been so awesome.

As you can imagine we are feeling all sorts of emotions. On one hand I am excited to see him and hold him. On the other hand I can't help but feel this is the beginning of the end and it breaks my heart. Julia said "I wish he could stay in your belly forever where he would be safe." Exactly. Terry and I are just so sad. Trying to remember that God is in control. God knows Thomas's days and how long he will be with us just as he knows with all of us. Thomas's story is already written. I am praying this time will be blessed and beautiful.

Our prayer requests:

-Strength for Terry and myself, so that we can be strong for the children.
-Wisdom as far as the children go and letting them see Thomas. I want to protect them from pain yet I want them to see their brother.
-Praying that there are not any complications with the birth for Thomas. Henry needed to go to the NICU because he had developed a pneumonia from inhaling amniotic fluid. This would be very bad for Thomas, so I really pray it is an easy, non traumatic healthy birth for him.
-Praying that we can recover in our own room with just our family and not in the L&D recovery room with other patients.   Answered! Spoke with the nurse and we have will have our own room!
-Praying for my c-section and that I am not feeling to sick, so that I can be fully present with the time we have with him.

I will have one of the girls update on here as soon as possible with any news. 

Thank you for your prayers.

love,

Kirsten

(The pictures above aren't related except for the last one. They just make me happy.)

36 weeks

I am 36 weeks and 2 days. My sweet little boy is still active. I go to the OB this morning. They will check to see if I am dilated. I should find out next week if they want to deliver at 38 or 39 weeks. As long as everything is status quo. 

Amandine commented a couple of weeks ago (Thank you Amandine!!) and asked if I had seen the blog Be Strong and Courageous. She gave me the link, and when I opened it I cried. It is the beautiful story of Susie and Matt and their little miracle Joshua. Joshua had a very serious encephalocele like Thomas’s. Susie delivered Joshua naturally and they hobbled out of the hospital with him 4 hours later, brought him home and he lived with them for 67 days!! If you have a moment click over and read their story. The sidebar has all of the links to Joshua’s story. Amazing!

So, I am hopeful. I am hopeful that we will get to have Thomas at least for a little bit. We will love on him for as long as our dear Lord sees fit. That is my prayer.

We have had some big discussions around here lately. Talking with the younger kids about Thomas and God’s plan. I showed them the story about Joshua and showed them the pictures and explained that this is what Thomas may look like. I explained that we don’t know how long we will have him but we will love him and celebrate him. Also talking to them about our loving heavenly Father and how He always, ALWAYS, wants what is best for us. Just like their Daddy. Even when it doesn’t make sense to us it fits into His perfect plan. So we just have to trust. (Which is very hard to do sometimes). Someday we will see how this all fits together. I also told them that our goal as parents is to get them all to heaven. Thomas will be there. He will be our special Saint. They thought that was especially awesome that they will have a brother to intercede for them. Their innocence and acceptance amazes me. Children are so pure. The bigger kids are a little quieter. They know we are here. They are also talking to each other, leaning on one another. It is harder for them. 

So, as we get closer to meeting our little boy I am anxious and scared, sad and excited. I’m still learning to let go and trust.

I hope to be back sometime this week with some pictures of the happenings around here. I still need to write about MAY. Crazy, crazy May. Joe turned 16. Crazy May was also a big month for Julia. So hopefully I can get all of that recorded here soon. 

In Christ!

33weeks and 4 days

I had an appointment yesterday. I was able to get another peek at Thomas. They think he weighs about 2lb 14oz. Looking down at my belly though I think he is a little bigger than that. When the ultrasound tech said "look at the hair on top of his head!" the tears started to roll down my cheeks. Like I said before, the toughest part is still in front of us and oh how my heart aches.
My blood pressure has been running high. My doctor is worried about preeclampsia. I've never had preeclampsia with any of my pregnancies. The doctor said that it sometimes happens when there is a birth defect. I think this is ultimately what is going to make us deliver as it has been consistently creeping up. I had blood work done yesterday and today so we are keeping an eye on it.
Thank you for your continued prayers.

On Strength and Weakness

Being pregnant with a baby that I know will not live outside of my womb gives me great pause. I look at my children so differently now. I am so thankful. So truly, truly thankful for each and every one of them. When I worked as a nurse in the NICU I saw all sorts of disorders and defects. I remember saying to myself back then before I had children what an absolute miracle a healthy baby is! Never did I think it would be me, that I would be going through this. That my baby wouldn’t be healthy. We think we are in control. We are not. Every breath, every beat, is a gift. These children, my children are a gift. They are precious. Even Thomas with his malformation. He is precious.These last couple of months I have been so thankful that I am a woman and a mother. I am so thankful that I feel Thomas move. He is such an active baby. This may be all I ever know of him. My heart aches for Terry. He won’t get to know Thomas like I do. I pray for extra graces for him. I know it is so hard. Bless this dear man because he feels so bad for me.

Everyone comments on how strong I am. I guess I appear that way on the outside. There have been moments when the pain and realization of what is happening sets in and the anguish is so intense I just want to die. I want my baby. I also know the toughest part of this is still ahead of us. I think about this sometimes and ask myself the question. “Am I strong?” I certainly pray for it. I pray for strength constantly. Strength for Him and through Him. I pray for strength so that I can be a good witness.

“Am I strong?”

What choice do I have really? There is no medicine I can take to help Thomas, no treatment. Bed rest won’t help. It is out of our hands. So what choice do I have but to surrender. Surrender it all. Surrendering is strength. In my weakness He is made strong! (2 Corinthians 12:10) That little verse out of Sacred Scripture makes so much sense now.

In my weakness and my suffering I pray that there will be good in all of this. I know there will be. Our little Thomas who may never know life outside of my womb will change lives. I believe he already has. I whisper to him “when you get to heaven you pray to God for your doctors who offered us “options” you pray for all of the doctors who offer women options, who don’t see how precious every single life is. Pray for their conversion.” I will beg his intercession on their behalf.

We've moved!!

We have moved into our home!! We finally have internet so I wanted to pop in and let you all know that we are doing fine. We moved in two weeks ago to a house with an unfinished kitchen, one working bathroom, exposed nails and wires. Needless to say it has been a little bit stressful! Amongst moving has been a Confirmation, First Holy Communion, eighth grade graduation, finals for Joe, and this weekend a ballet recital and all the craziness that leads up to a ballet recital. And amongst all of the scheduled stuff there was a series of unfortunate events that I will write about soon. I have to write it all down when I get a moment because I really couldn't make this stuff up. All the while I have been begging God not to take Thomas. The deadline that the Doctors imposed on Thomas;  the time that he would most likely die inutero is now, between 26-28 weeks. I will be 28 weeks tomorrow. As I type this he is hiccuping!! We had all this "important" stuff going on that I wanted and needed to be present for. I have been so stressed and worried about it. This has been a very dark time for me. As you can see I am still learning to trust and surrender. 

I had an ultrasound last week of our little Thomas. His growth has slowed down. His heart still has a little fluid around it but no more than last time. His heart has enlarged though which is indicative of Congestive Heart Failure. He was very active during the ultrasound and I commented to the tech that for a baby who is so sick he sure is active. We tried to get a 3D (or is it 4D?) picture but he kept snuggling his face into the side of my uterus. And his little hands are always by his sweet little face! 

I will be back soon with pictures. I have tons of pictures and I recently found my camera in a box. Just in time for recital.

keep moving...

I had an appointment last week with my OB. It was the first time I had seen her since the official diagnosis with Thomas. I had been avoiding it. The minute she walked in the room I burst into tears and we cried together. I knew that would happen, hence why I avoided her. I love her. We talked for a long while. She explained how the OR will be during the delivery and we talked about bonding with Thomas after he is born. I think about all of this to much and it is almost to much to bear. 
I should probably back up. I had another ultrasound last week. Thomas's entire brain is in the encephalocele. There is also some fluid forming around his heart. My OB thinks that is what is going to cause the most trouble for him as far as how long I will carry him. She doesn't think I will carry him much longer. Needless to say these visits are so so hard. It leaves me entirely drained. 
I really just want to crawl in a hole and sleep until I am past all of this. But...I know that will not help. I also have my beautiful family to care for. (Thank you my dear Lord.) There is soccer, ballet, track. There is a house that we are remodeling, (i can't wait to tell you all about this whole process and God's timing and hand in all of this) a house that we are packing up, dinners to make, laundry to do...you get the point. Life continues on and for that I am thankful. It is crazy beyond crazy though. I am getting by through by the Grace of God. And prayers. Dear friends thank you for that. 

(The pictures above are from our new farm. We are still trying to get that house done and ready to move into and our current house packed up. I am praying this will all happen in two weeks. I think it wil take a small miracle for that to happen but one can always hope!)