Wednesday morning Garak is still with us and we are treasuring every moment we have with him. Garak has been held constantly and he seems to be completely at peace. His sweet eyes open a few times each day and once they are opened everyone gathers around him to look at his big sweet blue eyes. People are saying Garak is finally at peace and enjoying being held and that is why he is still with us, I completely love this idea and am loving the time with him. I am amazed by how much love Garak is giving us, even at his weakest moments. He has such a strong spirit and is doing everything he can to make this easier for us.
Monday morning he had a few seizure like episodes. We called his hospice nurses and decided once again to give him Keppra (seizure med)twice a day. Once we started the Keppra he did not have any more of these seizures. We also have started giving him the Hydromorphone and Lorazapam every 4 hours. When we came home we were only giving him these meds when we felt like he was in distress, but now we give it routinely.
At night we take shifts on being awake with him, not only do we want to be there when he passes, but we have opted to have him go through an autopsy. The department head of the neurology department at Primary's believe there is a 50/50 chance that they may find something regarding his conditions. I think the only reason we decided to do it was to help our other children, to know if this was a possibility for their children in the future. Like the decision to feed Garak or not, this was another extremely hard decision we had to make. The thought of him going through this is something I can't think of and try to push out of my mind.
Tuesday morning we met with the mortuary company and because of this it was an extremely hard morning. I think Tyson and I both knew it was going to be extremely hard, but no one can prepare you for how horrible it really is. This is one thing that no parent should ever have to do and never even think of. I can't go more into this because again it is something I can not think about at this time and is extremely emotional for me.
We have had so many family and friends visiting expressing their love for Garak. I am in awe with how many people, people I don't even know, love this little boy. He truly is an amazing baby who has brought so much love to so many people.
Last night Michelle arrived with our family pictures which were taken Saturday evening. I was amazed by how perfect each picture was. There were some that even looked like there were angels with us during it. I am so grateful for a wonderful and amazing friend that has such talent to make these pictures perfect. These pictures are so precious to me and will be in multiple rooms of my home for the rest of my life.
Thanks for sharing these precious moments with us. Words can't express the tender feelings we have for your family as you go through this. Know that our prayers are with you.
ReplyDeleteWith love,
-Bret & Heidi
Oh, the yawn! Adorable. What a tender mercy to have this time to document your family once more. You are right, this baby has touched so many people, as has your whole family. I'm so grateful for modern medicine that has kept him at peace these last few days. I can't get over how content he looks.
ReplyDeleteAs always, you have been in my thoughts and prayers continually. And by continually, I mean constantly. I can't seem to think about anything but Garak this last week. My "mother's heart" mourns with you.
Val
Your baby Garak is an angel on earth. You don't know me, but I look daily into your blog because this story is extremely moving, and I think about your amazing child daily. I know Stephanie James (I am her dad's wife,.. Susana) and it is through her that I know of baby Garak. My heart goes out to you and your wife, and your beautiful children. I believe you are right, your little angel is holding on to all the love and tenderness you give him. It's hard to know what to say that would comfort you; you are amazing and strong parents. Just want to tell you that you are all in our thoughts and prayers, constantly.
ReplyDeleteJailyn,
ReplyDeleteYour family looks beautiful. And, it is amazing how much love and concern one tiny person can create...if you think about it, the amount of lives that Garak has touched really is a miracle.
As always...we send our love.
liZ and Jon
He is so beautiful Jailyn! What a precious angel. We love you and are thinking of you.
ReplyDeleteGarak definitely looks so peaceful. I love the pictures and I'm so glad Michelle was able to capture the love you guys have for eachother. I am amazed at your courage and strength. You are such an example to so many. My prayers continually go out to your sweet family.
ReplyDeleteWith love,
Maelynn
Those pictures are so gorgeous. And that yawn is just precious. He looks so at peace. We are still praying for you daily and keeping you all in our thoughts. Thank you for letting us into this precious part of your life.
ReplyDeleteKnowing how your family has struggled with health issues over the years I am pretty confident that this precious little baby was sent to you for a reason. There are very few people who would have had the strength that you two have had to care and love this baby like he needed. We are praying and thinking of you. Thank you for sharing his story and the pictures are beautiful!
ReplyDelete-Kendell
What a treasure those photographs are and will be for your family forever. Your family is an example of strength during adversity, and I pray daily for your continued strength. Love you.
ReplyDeleteLynne
Tyson and Jailyn, we wish there was something more we could do for you and your family at this time, know that if you need anything please feel free to ask. Also know that you are constantly in our thoughts and prayers.
ReplyDeleteKevin and Sumer
Very precious. My mother heart aches for you. I won't pretend to imagine what you are going through, but I feel "snippetts" of your pain as I grieve with you and your family. I am sure life feels overwhelming at times. We are so blessed that we have the gospel in our lives. Just imagine the joy you will have in the hereafter where you will be able to raise precious Garak, in his most perfect state. Heavenly angels are awaiting his return and he will be your angel to look after you for the rest of your lives. I know I don't know your family well, but I admire the courage and strength that you have had these last few years. Thinking of you and praying for you and your family.
ReplyDelete-Tami and Chris
Beautiful pictures. Garak looks very peaceful and your family looks great. Just leting you know that we have continually kept you in our prayers and keep pushing the silent love your way as I look over at your house. I am sorry that you have to feel so much pain. We will keep praying that you will have the strength of the Lord to endure through this.
ReplyDeleteJulie & Cameron
We just wanted you to know that we're part of Garak's fan club. I keep thinking of the verse: "Through small and simple things ...". I think it really means, 'through small and simple children'. You have done such a great job of expressing your thoughts and feelings. What a blessing for so many to feel a small portion of your experience.
ReplyDelete- proud to be Garak's Uncle Doug and Leslie
Our family as well as my extended family continue to keep your family in our prayers. I can't even begin to imagine or comprehend the grief and pain you must feel. I am so very sorry you are going through this. I hope it gives you even a little peace knowing others care for you and are praying for you. Trina keeps us updated on things as you are continually in our thoughts. Thank your for sharing Garak's story, especially at this difficult time. The family pictures you posted are precious. You can see and feel his peace and love for you as well as the love you all have for him. I feel blessed and honored to "get to know" Garak through your blog and through Trina. We will continue to keep you all in our prayers. Much love, Mindy, Huston, Carson and Garrett Franklin
ReplyDeleteTyson and Jailyn, my heart aches for you and your family. I think of you daily as you are going thru this. Your family is in my prayers as you try to find comfort and peace during this difficult time. Thank you so much for sharing your blog with me.
ReplyDeleteJill Roberts
Jailyn and family: My thoughts and prayers are for you these next few days as Garak prepares to return to his Heavenly Father. I can't imagine the anguish you've felt as you've tried to care for him these past few months only to find that his body just wasn't strong enough for his perfect little spirit to remain on this Earth. I'm grateful for our shared faith that can bring words of comfort to you and provides the way for you to be with your sweet little one again someday. With love, Jayne Gubler and family
ReplyDeleteWe are very grateful for opportunity to visit with you Tuesday and feel your courage. Cindy and I were very moved by your deep love devotion and grief. I will always remember the privilege of holding Garak and sensing his life, now peace, and strong spirit. He is truly a mighty, mighty warrior, and will bless your family. The pictures are sensitive and beautiful. They evidence the love and wholeness of your family, the bond you have together. Love, Uncle Brian and Aunt Cindy
ReplyDeleteOur prayers are with you as you go through this. We pray that Heavenly Father will give you everything you and Garak need to get through this and keep going forward. Our family has been out of town in California this week but you have been on our minds. The pictures are beautiful. What a blessing to be able to have those for your family and to share with others. I have faith that God will provide for your family and for Garak what is best for him. We look forward to seeing you again. Let us know if you need help with your boys as you spend these moments with Garak.
ReplyDeleteJon & Sara
Just wanted you to know that I am thinking about you guys and praying for your family. I adore your family pictures...they are such a treasure. Sending lots of concern and love your way.
ReplyDeleteI saw your blog via your cousin Martha. My daughter has seizures too, had infantile spasms and now intractable epilepsy. Just have to say how beautiful your boy is and pray for you and for him. What a lovely family you have. Prayers and best wishes for your support and peace.
ReplyDeleteTyson and Jailyn,
ReplyDeleteThese pictures of your family are beautiful!!! I am amazed at the strength Garak is showing. I can just feel the strength of his fighting spirit from so far away. He is a special little boy who has touched many lives. I know he will continue to. Thank you for sharing a bit of this tender moment in your lives with all of us. I have shared this experience with my young children, and they ask about Garak daily and remember him and your family in their prayers. Each of you is not very far from our thoughts, in fact I find myself constantly thinking of you and your sweet son. I pray that the Lord will bless you and each of your children through this difficult time. We love you all.
Martha Yorgason Grace
Oh Jailyn and Tyson,
ReplyDeleteI keep checking in with you when I can to see how everything is going. I keep thinking and thinking what I can do or say that would help in anyway and I feel completely helpless. So then I say nothing and read as tears stream down my face and I don't think that helps you either. The pictures are amazing and will be such a treasure for you forever. Such a beautiful beautiful family. I feel so touched that even in the moment when this is so amazingly hard, that you see the blessing this beautiful boy is to you all and can drink in every moment you have left. We love you guys!