This quick takes is gonna be kinda depressing. It's how I feel right now. My apologies.
#1 I feel like I can no longer track the progress of JF's muscle tone. His tremors and whatnot seem to be inconsistent. Yesterday they were getting better according to one, today the neurologist wasn't impressed. The same is true with his gag and suck. I guess we have now officially entered the waiting period that they kept warning us about. It's absolutely maddening.
#2 I am terrified of the feeding tube. I've been told it's not as scary as it seems, but based on the feeding therapist's body language I'm afraid that he might never eat normal food. In my small mind if he doesn't get the bottle now my chance for normalcy gets smaller.
#3 I am also terrified of a son who is mistreated and ignored by the people who surround him because he is special needs. You know what I mean. His mind might be there, but he can't run because of crippled legs. Or his body might look and work like normal but then you notice in his eyes that he's not quite all there. And so, in a society where undesirables are aborted and my special needs son is a member of a shrinking minority, he makes people uncomfortable.
#4 I'm sure I sound like a horribly selfish person saying these things, and it's true that I just want to put this all behind me - the guilt, tears, hospital, fears, prayers of almost desperate begging - but every parent wants to keep their child safe, happy, and pain-free, right? It can't be bad that I just want my son to be able to do whatever he wants - play with his siblings, join the soccer or football team, look forward to gym class, try out for the school play, dance with his prom date, graduate with high honors, get down on one knee or lay prostrate on a cathedral floor...
#5 Please understand that it's not that I doubt God's ability to heal. I believe that He still might completely, miraculously restore my son. I even believe that He may be leading us through all these unanswered questions and towering possibilities so the miracle will be, without a doubt, a miracle, to be attributed only to God. But it all depends on what His will is; and while God's will may be a miracle, it may also be for us to bear this cross for the rest of our lives. I doubt any serious theologians read this blog, but if there is one, by chance, please answer this question: Will God change His will, or set His aside, for the persistent pray-er?
#6 In more crappy news I know have a breast infection. I got a full blown case of mastitis with Ben and it was like having a bad flu for a week. I would love to get over this quickly. Oy vey.
#7 Lastly, I need to ask that people no longer drop in for visits at the hospital. If someone would like to see JF (besides grandmas) I ask that you call ahead several days and arrange a time and date. The reason for this is because between rounds, therapy, and visitors I have not been pumping enough while at the hospital (hence the breast infection) and I have not been able to do Kangaroo Care (skin to skin, chest to chest). We really have appreciated all the people visiting, but priorities have shifted with the infection and removal of the iv. Thank you very much for understanding.
My heart hurts with you. Praying still. Always.ReplyDelete
I'm here from conversion diary- prayers coming your way! Remember that your son has 2 siblings and a mom and dad and grand parents where he is 'normal' because this is who he is.ReplyDelete
My last child was in the NICU for 5 weeks (she was/is healthy- just premature)- I understand about the pumping and kangaroo care- in your case, it is even more important so you are DOING THE RIGHT THING by limiting and organizing visitors
#4-that's not selfish. It's far, far from selfish.ReplyDelete
Prayerfully uniting with you here in London. You and your little man are in my thoughts and prayers throughout the day.ReplyDelete
On the feast of the Guardian angels I am especially asking favours for little James Fulton and his parents.
In the Holy name of Jesus, and for the love of Jesus, I humbly beg you to heal him Lord!
Not an expert theologian, but there's a passage in Exodus 32 where Moses intercedes for the people and God relents (or some translations) changes His mind about punishing the people. And, while not directly addressing what you're saying, I keep thinking of the Parable of the Persistent Widow in Luke 18:1-8. She pleads day and night to a judge for justice and he finally gives in. Jesus teaches from this that we should pray and not give up. I know you're still stuck in the waiting, but I'll believe with you that a miracle IS possible. But, waiting just sucks, I'm sure.ReplyDelete
And, I agree with the other ladies, you are not selfish. You are honest, which I think is very admirable. Thinking of you and praying for you guys.
Prayers on the way for you and your family. I have never been in your situation, but remember St Monica and just keep plugging away at the prayers! You are not being selfish in any of these wants or desires. May God Bless and keep you all.ReplyDelete
I know what you mean about the breast infection! I had one with both of my boys...trying to do too much too soon. Quick antibiotics got me over them very quickly! Last one was self diagnosed...ran into my midwife at the Mall (christmas shopping) after having a Thanksgiving baby...she phoned in the script and I never even had to go into the doctors office!
(BTW: I am here by way of Conversion Diary...I am now following)
Lifting you up in prayer... God will bless you abundantly for you continued faith despite this trial. Thanks for being such a positive influence. :)ReplyDelete
Praying for you to heal soon. I have been there---That is NO fun. Praying for James.ReplyDelete
You are not selfish--Do what YOU and James need most. Praying for you All. GOD BLESS.
Bonnie, my heart aches for you. I wish there were something I could DO to make it better. You will continue to be in my prayers.ReplyDelete
Also, re: #5, when you feel up to reading again (I'm sure that doesn't sound great right now), I highly recommend the book 10 Prayers God Always Says Yes To. I discovered it after reading this recommendation, by a mom who said that the book helped her find hope and healing after her only child was murdered in the Virginia Tech shootings. I think it does a very good job of addressing those questions like, "Was this God's will?", "Will my prayers change God's mind?" and "Why does God let bad things happen?"
Anyway, know that you and James are in my thoughts and prayers every day.
Still praying for James, and for you and your family as you wait to see what the future may hold.
Only you and Travis know what it is like to be James' parents. You have no need to apologize for your feelings, hopes, fears, or decisions. I hope you can feel the many prayers being sent your way.
PS - I am sorry about the breast infection! I hope you get better soon.
I too found you from Conversion Diary. I too am praying for you and each of the members of your family.May God's will be accomplished and may you desire that with an inexplicable joy.ReplyDelete
Bonnie, I hadn't realized. Please read my blog so that you know what has happened it my life. And if miracles can happen to me, miracles can happen to anyone.ReplyDelete
God bless you. God's PEACE be with you. Grieve. There is nothing wrong with grieving. It is what it is. Go to God with it. Scream at God with it. Then accept the Peace which surpasses all understanding from Him.
Bonnie, I just read your blog. I sobbed. I am so sorry to hear what you are going through. But this I can assure you.ReplyDelete
#1: God is with you. You are so terrified you cannot feel Him but He is ESPECIALLY with you. Trust Him.
#2: Beg Mary for Her presence as a mother for YOU!
#3: ALL of this has a purpose. Even if you cannot comprehend it God's grace is written all over it.
#4: Just because God is present and there is a purpose doesn't mean you will not hurt. As a matter of fact, it almost is a guarantee you will hurt MORE. You will grieve and THAT IS OK.
#5: Take your anger to God
#6: Most importantly, ask God to use your pain. Offer it up, Bonnie. I beg of you, you have no idea what miracles will come about because of your pain and the fact you were willing to give it back to God.
#7: it is my turn to pray for you.
#8: God loves your son more than YOU love your son. He will not fail him.
May God's peace be with you. Hang in there and don't give up.
Praying for you and your dear ones! I have been where you are (NICU, unanticipated special needs, even the mastitis) - it is so hard. You will come through. Please feel the love and support coming from even us "strangers". Wish we could do more than a virtual (((hug))). Peace, peace, peace... whatever the outcome, God has you in the palm of His hand. Rest there.ReplyDelete
Found you through Conversion Diary - surprised to realize we are neighbors, parishioners in the same Diocese. (I'm at St. Patrick's - Seneca.) I understood, immediately, then, your reliance on Archbishop Sheen. I, too, have begun to pray for his intercession on behalf of darling James. Let James be his intercessory miracle! In researching your question about prayer online, I found this homily from a priest in Maryland. http://www.frtommylane.com/homilies/year_c/17-2.htmReplyDelete
Prayers for you and your family.