Grammie is sorry she hasn't posted in a while. It's been a long 24 hours.
Today is Sophia Grace's 4th Day Birthday! We are surrounding her with love.
Since our last post, Sarah and our princess are now at home! The last insult Sarah had to endure to be in the comfort of her own home involved a liquid inserted into a body cavity which results in lots of trips to the toydie. She says she's not doing that again for anything!
Sarah is so incredibly strong. She is putting aside her own pain (both physical and emotional) and remaining a rock for her two 'healthy' children. She was singing "Old McDonald" with Emma this morning (and I have the audio to prove it!) while sitting on the loo (sorry, no video to follow :)).
I wish I could tell you that our princess was doing as well or better than yesterday. Her seizures are intermittent, but fairly frequent. Her feeding is slowly decreasing, and she has not opened her eyes in a little over 12 hours. Her muscle tone has significantly decreased and is 'floppy'. All signs we secretly hoped would not come, but intuitively knew would.
It's strange how you think of life in terms of hours and minutes in times like this. We are all putting on a good face most of the time, but the sadness permeates our lives and is palpable.
Hospice was here this morning to make sure we know what meds she can have and when. Most of the nurses are not accustomed to working with families of infants, but we are lucky to have a former NICU nurse in the rotation. Lucky us.
The night of her birth, during my shift for the 4am feeding, my emotions were beginning to overwhelm me. The agony of watching your own baby girl struggle to comprehend the uncertain future her baby girl was more than I could handle. What did she do to deserve this? What lessons could she possibly learn from losing a second child to this devastating disorder? My faith in a just God was (and still is) in question. In an instant, I was overcome with a soothing calmness. The words "Embrace the Journey" pulsated through me. (Sorry if this is getting a little 'weird' but those of you who know me know that's pretty normal for me LOL).
So that's what we're all trying to do. Embrace this gut-wrenching, confusing, beyond stressful, agonizing journey.
I've been anxiously awaiting an update all day long. I have to keep reminding myself of the 3 hour difference between WA and NY. Thank you Grammie April for all you are doing. I agree that Sarah is incredibly strong. I think the whole family is superb! I'm sad to hear the update on baby Sophia. I had tremendously high hopes for a miracle. I also know that Sophia Grace is getting so much love, she's the luckiest little girl in the world right now.
ReplyDeleteAgain, please send all my love to Sarah and hugs and kisses to Sophia.
What a beautiful perfect little girl. My heart goes out to all of you in your family. I have been checking constantly, even waking up during the night checking, as I am not sleeping. Thank you for the update. I keep asking the same question what did Sarah and especially Sophia Grace do to deserve this. I have asked my pastor and in my prayers but have not received an adequate answer. I am sure some day God will reveal his reasons but for now I am not understanding his reason. My prayers and thought will be your whole family during this terrible and unfair life event. Take this time to just love her with all that you have. Even though the news is not good, I am still not giving up my hope for a miracle
ReplyDeleteWe just wanted to say thank you so much for taking the time to keep us updated. We understand how much you all have on your plates right now and we can’t even imagine what you are all going through. To say that you have all been strong would be such an understatement. Sophia is so precious and we really appreciate you taking the time to keep us updated when we know you must be treasuring each moment with her. Please send our love to everyone!
ReplyDeleteThanks so much for sharing Sophia Grace with us. She truly is beatiful and a gift to your family. Your strengths amaze and inspire me. Please know that you are in our thoughts and prayers. Barb and Diana Reis
ReplyDeleteHey Guys .. Mom I have to say your writing is AMAZING. I can honestly say that your words make me feel like I'm actually there with you all. As always, Thanks for keeping us in the loop. You truly are appreciated. Please give hugs and kisses to everyone ... extra kisses to Dad too, I hear he needs them as well. Don't forget ... I love you guys.
ReplyDeleteSarah, Joe and Family,
ReplyDeleteMan. None of this is fair! I do not understand either why almost 18 yrs ago that God decided to take my Robby home to be with him. I think eventually I stopped asking because I have faith in knowing one day I will join him again. It took a LONG time to get to that point. These past few months I have been watching Sarah from afar through seeing her at the Christmas Memorial and also Face Book. I have tried to say the right things and not something stupid.These past few days I have literally been on my knees praying for a miracle. I do believe I worship the same God Yesterday, Today and Tomorrow. The same God who preformed miracles back in the days of the bible. I'm still holding out. Realistically though I am scared for you all and the truth of what is going on. When you say embrace the journey.......I have had those thoughts these past few days.It's crossed my mind that I bet that you are all just cherishing every moment of Sophia's life. Sarah and Joe we are so sorry you have had to go through this again. To the family we are sorry for youy also. But you know what, thank you for supporting these two. So many couples who go through this have no one.
We so much want to meet your daughter and share her with you. We have loved you since we met you 5 yrs ago and feel this pain with you. Even though we are not friends who hang out and do stuff together we are always here for you.
Happy 4th Day Birthday Sophia.
Robb and Sara
Sarah, Joey, April,Randy and the rest of the family...You all are so amazingly strong and such a supportive family. I agree with you April, what could she have ever done to deserve such a painful journey in life. But yes that old saying comes back in mind, God has a plan, even if we have not clue what it is. I know you know that you are all in a lot of prayers and thoughts, but we too are also on a similar journey with all of you. It's just not as powerful as the one you guys are on. Just know that your family and friends are here for all of you sending you all thoughts of strength. I hope all of you remember to let some of the pain out..Crying will help to elevate some of the anger and anxiety. Sarah and Joey you are amazing!!! April and Randy you too are amazing!!! Thank you for letting all of us be a part of your lives..And little Sophia Graces' too!!!
ReplyDeleteSarah Price
I’ll never meet you tiny Sophia Grace,
ReplyDeletebut you changed my life.
Every morning I think of you,
so tiny and loved so hugely,
loved so fiercely, loved so deeply.
During the day when I think of you,
I look out at the mountain
and stand in wonder at the majesty
and mystery
of God’s sovereignty.
Every day as I think of you,
I think about God
Who can hold the monstrous mountain in the palm of His hand,
Who with His powerful love
also holds tiny Sophia tenderly in the palm of His hand.
Every day when I think of you,
I stand in wonder of your family
who chose life for you
knowing that it meant deep joy
and simultaneous deep grief for them.
Every night when I think of you,
I ask God to hold your family in lovingkindness
in the palm of His hands
I ask for comfort as they rest.
I’ll never meet you tiny Sophia Grace,
but you changed my life this week,
and next, and next, and next…
And that is grace in all of this
We are so sorry to hear of your great loss. Though we have never met we want you to know that our prayers are with you at this time of sorrow. A great comfort you have is to know that she is safe in the arms of Jesus.Be assured that He is with you. Elmer & Eva Dueck [ Canada ] Crystal Lawsons parents.
ReplyDelete