Dec 17 2007
Not sure what to call this one…
I’m trying so hard not to talk about it, because I’m not even sure what to say about it yet. But I’m finding it impossible to talk about anything else, so here goes.
I’m swirling in a whirlwind of possible diagnoses. I feel suffocated by words and phrases: “Failure to thrive,” “fallen off the growth chart,” “severe developmental delay.” It all probably points to autism, though no one has dared to diagnose him yet. He’ll begin therapy and thorough evaluations soon. The unknown is terrifying. The “known” may be worse…
Hubby says I’m coping so much better than he is. I’m not sure if his statement is admiration or an accusation. He’s wrong, though. The truth is, I’m barely holding it together. In fact, mostly I’m NOT holding it together. I can’t tell you how many times over the last few days I’ve had to excuse myself so that I didn’t break down sobbing in front of anyone.
Oh, if you could see my baby!!! He is so beautiful. His face so perfect, his eyes exquisite, his smile so pure, his love so real. I don’t understand why life has to be so much harder for him. I want to be angry with someone about it. I want to scream, I want to blame. But a quiet, intangible something tells me to be still, that someone much more powerful and informed than I is in charge here, and that there is greater purpose here than I can comprehend right now.
Be near me, Lord Jesus, I ask thee to stay
Close by me forever, and love me, I pray.
Bless all the dear children in thy tender care,
and fit us for heaven to live with thee there.
In my life, the greatest trials have generally hit at Christmas time. I’ve always wondered why that is—why do we have to ruin Christmas? But today I think that it may actually be a great blessing. The music, spirit, warmth, and message of Christmas buoy us up, strengthen us, help us to remember. It gives me the extra push I need to get through this.
I won’t tell you that I’m not scared— I’m more scared than I’ve ever been in my whole life. But I know that I’m not alone.
Oh wow, Brillig. That is heartbreaking. I’ll be praying for you and the little guy, and hoping that he gets the help he needs. Hang in there.
Wow. I am tearing up and goose-bumping at the same time. I just simply can’t imagine the fear, the unknown, they ache you feel. You are right. You aren’t alone. There is a purpose and a reason. You are strong and about the best mom for this job. You will help your little guy thrive beyond the expert’s expectations. Hang in there Bril.
That little boy is so special.
You ARE handling it well, despite what you think. So is Hubby, for the record.
Thoughts and prayers are with you and I can’t wait to see you next week!
You are in my thoughts and prayers! I hope that they discover what is wrong so you can start working in the right direction!
(hugs) Early intervention is so key.
I know that you have information overload going on with docs and therapists , etc, but we deal with “the spectrum” at our house too, and if you’re interested there is all sorts of information about dietary issues and the autistic/sensory spectrum.
My daughter flew under the radar - with nothing but little maternal twinges of something’s not quite right - until last year when she started school. Even at this, she’s quite high functioning, but has several issues with implications of significant social struggle in the future.
(hugs)
Oh my dear, this is truly heartbreaking. My thoughts are with you.
If you indeed get the diagnosis that you mentioned there is a woman blogger that I read who’s daughter has autism, and she writes mostly about that subject. She is a kind, sweet soul and having gone through probably all that you are going through now, she might be able to off you a little light. You may already be aware of her blog or her books, but if not here’s the link.
http://michelleoneilwrites.blogspot.com/
Good luck to you.
Dear Brill. You have an amazing family that your little man is a big part of and he always will be. I can’t imagine what you are all going through. You are in my thoughts. Much love. x
It’s not an easy road but it’s one many of us have traveled in varying degrees.
You can do it too Brillig, if you need to. When it comes to your kids - you can do anything.
Oh honey, I’m crying like mad here. Fuzzles has such a special spirit about him…I know that sounds corny, but it’s just…so true…I can’t find better words. I hope things progress quickly, that uncertainty is replaced with certainty soon. The unknown is so terrifying, and once you know what you’re truly up against it’ll be easier. Still heart achingly hard, but easier. It hardly needs saying that I’m hurting for you, praying for you…wishing as always I lived down the street from you.
You’re going to be overwhelmed by loving comments and emails love, and I just thought I’d mention beforehand that we don’t expect you to write back. Don’t let that guilt be added to the fray, alright? ~hugs~
I understand that underlying ’something’ that pulls you through. Trust it, surrender to it, and let it guide you.
I think, even though you feel as if you are hanging on by a thread, you really are doing quite well. You love him so much, and that, more than Christmas, is what lifts you up!
We are all rooting for you guys! *hugs*
I’m so sorry you are going through this, but if you need someone to talk to or cry on, I promise I’d pick up the phone in a heartbeat for you. ((Hugs))
I can’t imagine what you must be going through. I’m so sorry. I wish I had more words that were full of wisdom and just the right thing to say but I don’t. All I can do is offer you and your family my prayers. I’m glad that you can feel the Lord near you. He is and I pray that you will continue to feel the peace that only he can give you.
I’m sorry Brillig! I can totally relate. That sounds very similar to the month I’ve had. Little “B” is 59% speech delayed (so, at 22 months he is at a 9-12 month level). Also, he will begin up to 24 hours/week of behavior therapy, because after the evaluations “they” do not feel speech therapy is enough (we keep hearing the autism word too). My hubby isn’t taking it well either. His family has a lot of health issues, and he’s devistated that it may be genetic.
To top it all off- as you know- this process takes forever and I feel like I’m pulling teeth to get things rolling. We finally have hearing tests this week- yahoo.
Anyway, you aren’t alone. The heartache, fear and helplessness are felt here too! Love you! You’re little sweetie is perfect, and he will be fine, I just know it!
Dear Brillig,
I will be praying you through Christmas and to the answers you seek about your beautiful son. Thank you for sharing your heart.
I am sorry your heart is aching right now. I have seen that beautiful boy of yours and a diagnosis isn’t going to change that fierce Mommy love you have for him! It is the Not Knowing. I am grateful that even in your grief you are relying on The One who sees and knows. He made Fuzzles!
My friend…. I’m so sorry to hear this. My prayers surround you and your family. Please feel free to cry on our shoulders whenever you need to. We are here for you. (((HUGS)))
Jan
Oh Brillig, I’m sorry. Like Carla said it IS the not knowing. Jesus sees the whole picture and can carry you through. I pray God’s peace on you and your family.
I feel so much for you. Both a darling-bee-let-me-hug-you-I’ve-been-there and a BACK-OFF-FOLKS-don’t-give-the-girl-a-pity-party. I actually had someone ask a friend if they should send a sympathy card (as in for death) because the boys were born 10 weeks early. Fortunately he never sent it.
While you do need to take all the time in the world to get your head around this, you also need to find experts/therapists/THE WORKS who will give little man and your family the support and experiences he/you all need to get through this. Find out who is the expert and get into his/her practice pronto. Find out who is dealing with this as a parent and look to them for guidence and support. We had three years of the best therapies for the boys - physical, occupational, cognitive - you name it they came to our house. We even had a craniosacral therapist come (now that was an experience!).
Hang in there. You are a strong mama. No, a tough cookie.
I’ve being trying very hard to find the right words and not be my usual flippant self.
You already know that your child is a gift and the love doesn’t change ‘just’ because or ‘if’ there is a label attached.
Best wishes
I’m praying now and will continue to lift you and your beautiful, loving, perfect, baby up in prayer.
Hang in there! We’re rooting for you as you work with whomever you need to work to get answers - and help, if that’s what’s needed.
I’m sorry Brill.
I was so thankful when autism was ruled out for Obi-Wan but we still have to wait another month to find out what/if anything is going on.
He’s so behind in speech and mentality.
I look into his beautiful blue eyes and my heart aches for the possible “wrongs” that could be there. I could not hurt so deeply if I did not love him so fiercely.
I know that I have nothing to say that can make you feel any better or bring you any peace. I am so sorry that this has happened…although I am in awe at your perspective. Knowing that you are not alone…that is the most important thing. You AREN’T. And this baby? He IS so special.
Love and prayers and thoughts to you and your family. Seriously.
That turned my heart over. You’re in my prayers
Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow. ~Mary Anne Radmacher
Brill, no matter what, it doesn’t change what he is to you. None of that changes. Just the label they put on it. Yes, it will be hard. But you aren’t alone. And when you don’t feel like you have the strength any more, you have God. You have family. You have friends. And we’ll always try to help you find some.
Also…looking for the meaning of these things will drive you mad. TRUST ME. You’ll figure it out some day, but the answer probably won’t be now.
Loves Ya, Brilly Poo. Take care and I’m thinking of you and the family.
Please know that I am here praying hard for your family. I will keep my fingers crossed for all of you.
Although it isn’t as severe as autism, I remember getting the diagnosis that my babies both had a severe learning disability. Believe I understand it doesn’t compare to autism…but it is still devastating to know my beautiful baby will never grow up to be normal …and more than likely won’t ever learn to read well enough to support himself and have the life I want for him…it was a hard day but it has surely taught me so very much.
Hang in there and know I will continue to pray…let me know if there is anything at all I can do to help.
No words. Hang in there Brillig. It’s my worst fear, though I’m sure there could be worse. He is a beautiful little boy and I know you know that, and also know that we don’t how this life chess game will play out, but that it will. Hang in there.
Love…I’m sorry that you’re struggling- you are so loved, but better than that, you are LOVING. You are handling things really well- I’m sure of that. My sis-in-law said something once…
The Lord hands you nothing beyond your capacity to survive and thrive. But, by extension….he’s giving you the things that he knows you’re capable of handling. I don’t know if that makes ANY sense at all- but there is a way in place for you to handle what you’re going through. And part of that may be your friends- all of which are here for you if you need a hand. See you soon!
hope you don’t mind that I asked my readers to pray for you all…hope that is ok.
I don’t know much personally about this subject, but in my blog readings of the last few months I have come across 2 that have “abnormal” children. One you may know - the Queen of Shake Shake!
The other is M.
They have totally opposite approaches to the world. The Queen treats her son just like he is “normal” (whatever that means anyway) and M is getting all the therapy for her son that she can. Of course they may have different degrees of issues as well so that makes a difference. But what I’m really trying to say is that whatever “they” tell you, do you what YOU think is best for your baby. You’re his mama and no matter what they may say, you DO know best!
Blessings!
Krista
The Queen: http://queenofshake-shake.blogspot.com/
M: http://2under2whoknew.blogspot.com/ (she has an over abundance of swearing, but she’s brutally honest about her life)
Oh Brillig, honey, I’m sending you and your family the biggest loving hug I can. I will keep you all in my thoughts, especially that gorgeous little man of yours.
I know you will do what is best for your son because you will pray and listen. Be aware of your rights as a health care consumer, and make sure you get a second opinion before you accept any diagnosis.
Love to you -
Brilly - I went through similar things with my now 7yo … and he’s perfectly fine. If you’re interested in some alternative medicine ideas, email me and I’ll clue you in on what worked for us. There’s plenty of information out there and lots of options that are soooo much easier for both you and your little one than what the traditional medical community offers.
Lots of hugs - Lizzi.
So very sorry, Brillig. Prayers winging your way that something can be done and your little chap is okay.
You might be interested in a blog I posted the other week about cell phones and autism. It’s at http://annebradshaw.blogspot.com/2007/12/cell-phones-and-autism.html or just scroll down my other posts until you find it.
It’s never too late to stop using cells around a baby, and Dr Mercola’s general advice on autism might prove useful.
No matter what happens, your faith will get you, your husband and baby through this.
Your baby boy is BEAUTIFUL! I am shocked to hear he may have autism. God will take care of you and your family. I believe there is a reason for everything.
Yes, it is stressful. Yes, it is a bit scary. You are human and you are allowed to cry.
You are a strong woman, capible of handling this task otherwise it would not be sent to you. You will be in my thoughts and prayers.
I’m really sorry for you and yours. It must be so difficult. But you’re so right to use the strength of the season to help you through this time and beyond. God bless.
Love you.
Remind yourself that he will always be your beautiful boy with perfect sparkly eyes, no matter what the “label”. Getting a diagnosis will only help you help him, but will not change him a bit.
This is what helps my family anyway. (I have two cousins with a fairly severe diagnosis).
Also, I loved what you said about Christmas. Being near so many loved ones must also be a bonus of struggling during this season, no?
Holding you close…
I always believed that mother’s possess great courage.
I’m not really sure how to respond to this. I understand the waiting and wondering what life will hold, although not for the same reasons.
I am praying for you and your family, that questions will be answered and that, somehow or other, you will find peace.
I’m glad that you know you are not alone.
Oh, Brill. I can’t add anything to what everyone else has already said, so ditto. I’m about to cry right now–but I have the utmost respect for you, and I just know you and your little guy will come out on top. Love ya, girl.
You know…I have two children with Autism, as well as many friends and family members who have children with Autism, and those kids are still wonderful kids. Some of the comments people have made make it seem like Autism is some horror story. Yes, its hard to deal with, but you are strong enough to deal with it, and it may even be something that blesses your life in ways you can’t even imagine.
There are many resources out there whether the diagnosis is Autism or something else entirely. Many prayers are being said for your family, and you will make it through.
I don’t doubt for a second you have the strength to handle what every comes your way. You have clearly demonstrated that as a buzz member. From all of us at cre8Buzz we will be thinking of you and wish your family the best during this trying time!
Antman!
Brillig, I’m so sorry. Please hang in there, Alvin and I will keep you and your family in our prayers and thoughts. When we do our monthly fast, we’ll fast for your sweetheart.
If there is anything I can do, please let me know. By the way, call Dr. Larry Wylde at 756-8833. He’s in American Fork. I just attended a class he taught and he mentioned, in passing, that they were having a lot of success with autistic children with this technique or process he uses. Even if it isn’t autism, I don’t think it would hurt to call and talk to him. Tell him I sent you . . . he’s really a nice guy and he’ll treat you right. I’ll give him a heads up tomorrow, just in case you call.
Keep the faith, my friend. And go cry all you need to . . . it helps a lot. Believe me, I know.
Lots of love,
Candace
Thinking of you, love.
Oh, honey… There are no words. Keep the faith and keep strong. I hope everything works out.
*hugs*
Thinking of you and your little one. Stay strong. And there are many, many therapies out there, when you can catch this early. And it sounds like your doctors have been right on top of it. As a teacher I’ve worked with many, many children on the autism spectrum and for, again, many, many of them they are able to achieve completely normal lives by tween age if it’s caught early. My best and love to all of you.
I am thinking of you. I’d go along with the comment that you shouldn’t be offered a ‘pity party’. You don’t yet have the diagnosis, it’s not yet confirmed. If it is, you don’t know to what degree. You need to know and you need support - and it could, after all, be much better than you fear. These aren’t just glib words - our very first baby had a heart problem and didn’t make it, so I know what it’s like to live with a tough diagnosis. But often things work out better than you can imagine.
I’m thinking of you today….
God, please give Brillig and Mr. Brillig the strength to conquer the fear of the unknown. AMEN.
Rest in the fact that God blessed you with the very child He picked for you..and in the same turn, God picked you and your hubby for your sweet baby no matter the diagnosis. Your son is abundantly blessed to have you both.
*hugs* Sometimes it is that little face looking up at you not realizing that he is different that brings the most joy.
You are in my thoughts and prayers !
Oh, Brill, I’m so sorry! You and your family are in my thoughts.
I so feel for you Brillig because I have been in that very same spot you are in and you describe just how I felt. In my case it has turned out better than we thought. The worst is not knowing, once you do, you find out what to do and things get better. For Sheila up there in the comments also, my boys have been in the same spot at that age. They are in a special kindergarten now but their language development over the last 6 months has been incredible. Which in turn has set off a whole bunch of other developmental spurts. It is so exciting right now. Never give up on your kids no matter what the DX. Right now I have a video clip on my spot of them talking. It’s amazing, really. Last year even I wouldn’t have thought it. I hope and pray your outcomes will be as good, but no matter what they are, you are truly not alone at all.
I can only imagine how challenging this is for you and your family. I’m praying for you.
May God bless you and carry you through.
You’re an amazingly strong woman with an incredibly loving family. I know that you will be dilligent in your sons care and do everything in your power for him. Please do not get caught up in the “labels” because your son will always be the incredibly loving wonderful boy you know him to be regardless of any medical diagnosis!
My first response to this was that you need to speak to Jenn-in-Holland. Since I needed to as well, I called her to learn that she had already talked to you. So I know that you have the support, both blog- and real-world that you need. Hand in there Darlin’. Get out your tough skin ‘cuz you’re gonna need it to fight the battles you have ahead. And remember that Christmas is really not a such a bad time, as your next blog of course proves!!
Give yourself a hug for me, and I’ll wrap up in one from you. We’re gonna make it and our offspring are gonna surprise the world and us! Merry-merry, Happy-happy, and peace and health to you and yours.
I really admire your courage in putting yourself out there so honestly. Your post was deeply moving. I wish you the best and hope your Christmas prayers are answered.
Wow, sounds terrifying. Hang in there!!!
Have to admit, when I read this first time, I just sat there not sure what to say other than you are in my thoughts and prayers as is your child and family. But then my uncle died and Christmas was upon me–and I just didn’t get back to write. I just found it quite difficult to handle your news and think what to say, as I can only imagine what my own response to such news would have been when I had a little one.
I cannot begin to tell you how many times you’ve been in my thoughts and prayers over the past ten days. I do believe there are answers, and that there is healing available for your child–the scripture says “by His stripes we ARE healed and made whole”–hang on to that promise!
I’m so sorry to hear this. You are always in my heart and i always
pray for you.
Such a powerful post! My thoughts and prayers are with you and your family. xoxo