I think this is the most amount of posts I have ever had in a month! We've had a lot going on! This update is not a very positive one. From a doctors perceptive things are going horribly. We were just told today that as of right now there is nothing they can do for Deklyn. They are still trying to pursue other avenues to see if they can get some answers but right now things don't look promising. Please keep praying and praising God. I've often said "This has been the hardest time we've had" and every time I thought it was our last... I feel as though I've had the wind knocked right out of me and I'm fighting to catch another breath. Our son is very sick right now... at times its hard to see because when he is awake and happy he seems perfectly fine. He clicks his tongue, smiles and wiggles around... but out of no where he crashes, starts gasping for air and begins to go blue.
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Honestly, I can't take it any more. I will sit here as long as my son is in the hospital but I am so tired of watching him struggle. I know there has got to be people out there who understand where I am coming from but please listen to me... if you have a healthy child PLEASE know how lucky you are.... hold your child tight... enjoy the noise they make even if you may find it annoying at times... when your child cries in the middle of night and you find it unbearable... think of me. I would love to be in your shoes. Don't take these little things for granted...
Now don't get me wrong, I feel incredibly blessed to have Deklyn in my life. He's one the most amazing things that has ever happened to me... but we are tired. This emotional roller coaster that we've been on for almost 2 years now has taken about 40 years off my life, or at least thats how it feels.
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Even though I may make things sound incredibly un-hopeful, we are not giving up. I will fight with all the I have even if its not much. But quite honestly, right now I feel like I would be happy for Deklyn if he passed away... I don't know how I would make it... but I would be so happy that he'd finally be whole. Finally be healthy... and finally be with Jesus. I know I'd see him again... and funny thing is, I've always been one of those people that didn't want Jesus to come back right now... I had things I wanted to do... but now, he could come right now and I'd be so glad that all this crap is over. This world sucks... and I know I haven't even seen half of it.
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I am still here, I am still fighting... until Deklyn tells me he is done, I will be beside him telling him how he's been such a good son and how much I love him. Please continue to share my blog, and my son's story. Continue to pray and praise God for Deklyn's healing. We need your help...
Take it one moment at a time. Consciously take note every time God reveals Himself, be it in big or small ways (I know this is sometimes hard to do, but there is nothing more emotionally, spiritually & physically nourishing than knowing without a doubt that God is right there). Know that you are being surrounded by the love & prayers of those who care.
ReplyDeletePraying...As a fairly new mom, I cannot begin to imagine what you guys are going through (as I know your blog is only a small glimps into your life and thank you for sharing it with us). Your faith is astounding and an encouragment to all. Giving praise to God for the blessing Deklyn is and praying for strength, knowledge, patience, grace and peace for you guys, your family, the doctors and nurses.
ReplyDeleteSonje. Praying continuously. God is victorious!
ReplyDeleteSending many prayers! My heart breaks for you, as I know how hard it is to see a child suffer. Our son went to be with Jesus a year ago. We are filled with hope that we will see him again. I hear a lot of me in your posts. We have similar thoughts. Keep looking for the rainbow... it always comes after the rain.
ReplyDeletei am praying so hard for you...my heart goes out to you...<3
ReplyDeleteLuke 1:37: For nothing is impossible with God.
ReplyDeletePraying for you and your family!
Hi Cassondra,
ReplyDeleteI am so sorry to hear Deklyn is severely struggling right now. I pray for him all the time. I reached out to you months ago when our first baby to be was diagnosed with hypophosphatasia and you immediately responded. Thank you for that! We lost our second baby due to the same diagnosis. I've been struggling to find sense in it all and continuously follow your blog. I pray for Deklyn and your family all the time. I always think of my babies I lost and if they would be in the same situation as Deklyn. To see your pictures of him smiling and interacting with others is just so moving. It brings me to tears. He is just sooooo beautiful. He comes to my mind all the time, even in the middle of work.
I understand your feelings of setting him free of pain and suffering, although you want him to improve. He is a lucky boy to be so loved.
Remember, prayers are going out to Deklyn from all over the world. The power of prayer is amazing and you are an amazing mother!
xoxo,
Erin
I don't know you personally, but I know people who know you and that's how I came across your blog. I pray for you and for your family and for your little one. Just remember that no matter how Deklyn struggles, you have given him a gift that many children never experience: a life filled with love and tender care. When he goes to Heaven, whether that's soon or in 75 years or anywhere in between, he will recognize God's love because he first experienced it through his parents.
ReplyDeleteI know that words, no matter how heartfelt and sincere, won't make this an easy path for you, your husband, and your son. But I hope that sometimes, you're able to remember, and be comforted by, the fact that you are all loved and thought of and prayed for. I hope that through it all, you're able to recognize God's 2 hands: one holding you up and supporting you, and the other gently covering and protecting you.
Amen to that! As i read this blog tonight i am reminded of the song "God Be With Us Till We Meet Again", as a mother of three children i pray that you will have a healthy son one day that you will take home with you if not here to your earthly home but then to heaven were all those troubles and sorrows will be no more. God give you the strength to continue and the comfort in these hard times. Praying continuously.
DeleteDear Cassandra,
ReplyDeleteI am so sorry to read this update. Deklyn and your family are in my prayers for the nightmare to end very soon, hopefully with Deklyn overcoming all this and being able to live a healthy life.
I know that whatever I may imagine in terms of how difficult this situation is for you is nowhere near what you actually experience, but one thing I am sure of is that your love and strength help Deklyn and that he knows and feels how much you love him, and that it is the biggest comfort for him.
Sending you prayers and love to keep you and your family strong and know you are loved
xxx
Be carried by the many prayers of those around you (those who know you personally, and those like myself who know you only through your blog). Your dedication to Deklyn and Jesus in this journey is beautiful. Find peace and rest. Your story is in our prayers continually.
ReplyDeleteYour son is beautiful. His smile is one of the most amazing I've ever seen. I admire you, cry for you, hope for you and pray for you regularly. God is using your family in a way that can't be understood at this time. Your unwavering faith is inspiring. May you continue to feel the power of prayer and God's neverending love and strength around your family.
ReplyDeleteI can't imagine the heartache and pain that you must be feeling, almost numbing at times I'm sure. I don't know what you're going through from experience, and I am guilty of feeling annoyed at times with the noise of my children when I'm tired (or think I'm tired, reading about your experience, I truly do NOT know what being tired is) Thank-you so much for reminding me how precious my children are and how easily we take them for granted. Tomorrow I'll try to give my children a hug and thank God for the health of my children when I get frustrated with them, and also say a prayer for you that God may pour out His grace and mercy upon you, your husband, and Deklyn. Keep up the faith and keep holding onto the hand of our loving God, He has a plan, we just don't know what that plan is.
ReplyDeleteMay the LORD hold you near, always!
ReplyDeleteMay your son Rest in Peace. Much love and I will continue praying. I'm sorry to hear about the loss of such a strong little man.
ReplyDeleteCassondra and Sheridan,
ReplyDeleteWe don't know each other, but I know of you guys and Deklyn's story through Carmel. I'm so sorry to hear of the loss of your little man. Yes, he's whole again with Jesus, but there is still so much pain in the loss.
I must confess that right now I have an almost 4 month old who (in my opinion) is being very difficult and fussy. After reading what you said about parents with healthy children, I feel like garbage. It is NOT your fault I feel like that. Shame on me for failing to see how much of a blessing a healthy child is, regardless of how much we have to bounce, feed, cuddle, rock, etc that child. Every time I hold him from now on, I'll be thinking of you guys and Deklyn.
You guys are in my prayers.
I think that your blog is very touching and the strength you show in reaching out to the public is commendable. I am so sorry to hear that things are seeming bleaker, and I only hope that your suffering may pass very soon. My thoughts are with you and your son. I hope that there is a light at the end of the tunnel for you in these incredibly difficult times. Thinking of you and your struggle. Bless you and good luck. I really hope that Deklyn recovers speedily. And thank you for your blog and the contribution it makes to other people and the help it may afford them in difficult times. Lots of love from Canterbury, Kent. Best wishes to you and your family.
ReplyDelete