Monday, August 31, 2009

Staying in Bed Sounded Like the Best Idea

When I first opened my eyes this morning, all I wanted to do was cover my head and stay put all day long. We had an appt. with a man from the funeral home. So, get up, get a shower, don't think about it, drink coffee, don't think about it, check on Bri, don't think about it...walk the dog, don't think about it.....he pulls into the yard and oh, there's no words. Thank goodness he wasn't driving a vehicle marked accordingly. I asked him when I called last Friday if the vehicle he would be coming over in would have any type of business identification on it and he said no. Thank God for little things.

Mr. Dan was such a nice, respectful christian gentleman. He stated that he knew how we felt because he and his wife also had a child pass away at an early age. I was ok until I had to fill out a form with Brianna's information. That's when the tears started to flow....Right now we are planning on a Memorial Service and not a funeral service. There is absolutely no way that neither Jerry or I could stand to see a child-size casket. I don't think I could even walk inside the church without losing my mind. Anyway, we made it though the preliminaries.

The stress we are under makes simple ordinary things HUGE. I can't seem to stop crying, I don't want to be in the house waiting for the time but nor do I want to be away from the house and lose precious time. I say mean things to Jerry, I find myself isolating myself, I can't quite explain it except to say that it hurts so bad. I want this chapter in my life to be over yet I don't want it to be over. And for all of you T-18 moms out there whose children are alive, if you are like I was before this pulmonary hypertension death sentence, I hung on every word other T-18 mothers said hoping and praying that what they were going through would not be what I would be going through one day. I always wondered exactly what would take Brianna's life, a cold turned to pneumonia, cancer, just what would it be. All I have to say now is that it could be worse. As far as we know Brianna is not in any pain. That is our continued prayer at this time. No pain for sweet baby Bri.


  1. Brenda, you write so eloquently about the most painful experience of a parent's life. ... My heart aches for you, and I wish I could bear some of this burden for you and Jerry.

    Don't know who said this, but I love it:

    "We don't know what the day holds, but we know Who holds the day."

  2. i just have to share something with you...and i hope with all hope and pray all my deepest prayers that it's the right thing to do..because i feel like i get your heart and as a mom of loss, i love it when people share that they have thought about us throughout their means so much.

    When i shared with my husband about your blog when you first brought Bri home and you mentioned comfort care,...and the halloween costume..and just 5 more minutes...our hearts broke with yours and we cried together. And he said "thank God we didn't have to do that..." and while i understand what he's saying...because our prayer was that we wouldn't have go thru just exactly what you are going thru, i also know you wouldn't trade a moment for anything in the world. I looked at him and said, "but you know, i remember my friend telling me that she was thankful she didn't have to go thru what WE went thru with Cana, since she lost her daughter at 13 weeks in utero,...but you and i wouldn't give up our 27 hours with Cana for anything in this world..."

    I've often wondered what life would have been like for us, had God ordained her life to be here with us for a time...and while i'm grateful He called her home when He did, I'm also grateful to see Bri's shining smile back at me. I know this pain...i feel like i CAN say that with some knowledge..but i also only know it as far as 27 hours. I am so grateful WITH you as you celebrate this life with Bri. I'm grateful for every moment so far, and every moment you have left. Thank you so much for sharing her with me.

    i'm praying for your hearts. Don't be too hard on yourself. God's grace covers us in our weakest. And you are showing all of us just how strong you are. I know you don't see it as having a "choice" in being are just doing what you do...but we are so proud of you.

  3. You are so very brave. I am crying tears for you now and am not really sure why. I'm amazed at all the precious time that you've had with Bri compared to my 28 weeks of pregnancy with my Olivia. I know these must be some hard, hard days for you. I can only imagine. I pray for the peace that surpasses understanding for you and your family.

    P.S. I love Ashley's tattoo :>)

  4. Brenda,

    My heart goes out to you. You must know that strangers all over the world have rejoiced in the miracle of Brianna's life and share in your sorrow at this time.

    Thank you for sharing it all.

    I have shared your blog with the perinatal hospice listserve group. All too often the option of comfort care only is provided for these little ones. You had the option and chose a different path that was right for your family and in the best interests of your sweet baby.

    Nonetheless good hospice care is just as important, whenever it happens. Sadly, that is the only thing we can be sure of is that our little ones are not here to stay.

    Hugs and love to your family. I am certain that God will be with you and guide you during this final journey.

    Mom to Annie, trisomy 13

  5. Brenda,

    One treasure of faith is being able to encourage others particularly during a difficult trial. Well this is one of the most difficult trials I can imagine and my desire is to encourage you. Yet it is you who continues to encourage me with your heartfelt insights of this T18 journey, and glimpses into Brianna's ( your family's ) life.

    The see/saw desire for the journey to continue or to begin the recovery from a life forever changed is a big part of T18. It becomes more or less intense literally based on the day to day health status of our children. I am praying for you and I am sorry that the dramatic rise and fall of the see/saw is more present in your everyday.

    I once read that God gives comfort in the wilderness of crisis and loss and I am praying that He will comfort you now and throughout.

    "Weep with those who weep" Romans 12:15

    The Bible commands us to join in the suffering of others and for more reasons then I can mention, I stand along with you ( as do so many others). Celebrating (Brianna's life) and weeping along side of you, Jerry and Ashley.

    Hugs to Brianna and you all. Love In Christ,


  6. I will be back to post, just too hard right now after reading your words. Prayers...

  7. Brenda - no mother should have to go through what you are going through, and your reactions are normal, natural and nothing to be ashamed of. I do know that God's heart is breaking for you all just now.... know that you are in this Englishwoman's prayers, and I am sure many others.

  8. Thank you for sharing so much of yourself with all of us. There are thousands of people that you have never met that are praying for your family and countless families that you are helping by sharing your journey. The tears and prayers flow from all of us.

  9. Jesus, today I ask that You hold Brianna, Brenda, Jerry, Ashley and all the family closely in Your love. May the depth of Your tender care and love sustain them. You are the author of ALL comfort and consolation and You know how to minister to each person in a unique way that they can recognize. I am trusting You to do that today. Thank You that we can find safety in Your arms! CAROLE

  10. My heart is breaking for you. Cannot even imagine. Praying for sweet Brianna to remain comfortable and happy in her parents arms until it's God's timing for her to be in His.
    May God bless you, keep you, give you strength and peace.

  11. I wished there was something I could do for you. I know everyone says that. We feel so helpless and want to make things better but alot of times we just get in the way. Our hearts go out to you along with our prayers. you are always in my mind every min. of the day. We are no more that a phone call away. Prayer request have gone out all over FB. I was sent so many angels I cried. We love you .

    Kim David Katie and Justin

  12. Brenda,

    Your feelings are not wrong. You are grieving. Don't try to rationalize what you are going through right now. The pain, the desire to stay in bed, all of it is normal. You are doing EVERYTHING right! You are being human, you are being a mom.

    We love you all so much. I just wish I could be there with you to give you a great big hug.

  13. Thinking of you during this difficult time. You and your family are in my prayers. Brianna is a beautiful gift. What wonderful people God chose to watch over her!!

  14. you are an amazing woman. i'm thinking about you and praying for you. i pray every night that brianna feels no pain. love and hugs.