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Tuesday, July 10, 2007

Please Allow Me A Moment...

I long ago swore I would not write posts that were filled with sadness or dwell on how bad my head aches or whether I have a hang nail or not. The world is filled with far too many trials and there are always people who suffer far greater ills than I can even imagine. So, with that said, I do hope you will allow me a moment to "cry on your shoulders", so to speak. Perhaps I need a safe place to express what is in my heart and this blog just seems to be the best source for that. I will never forget the afternoon my brother and sister in law told us that they were pregnant. I will always remember every detail of the day he was born. I was there when he was born... I have his face and hands and feet memorized...I know every curl, every wave in his thick brown hair and each crinkle around those sweet dark eyes. He is an adorable little boy who turned 4 in March. I was Boo's caregiver for his first 3 years. I love him more than I could ever express to you. His smiles are so filled with the joy of life...he, like my own children, holds my heart in those chubby, little hands. We have all known for awhile that something just was not right. But getting to today's diagnosis was a long and arduous path. I will always hold his first pediatrician in disdain for treating our concerns dismissively and allowing so much time to go by before Boo's parents were able to move forward with specialists and testing. The story is a long one but, after many tests and various doctors seeing him, they told his parents, this afternoon, that Boo is most probably autistic and may be mildly retarded as well. Yes, I knew something was wrong but I have always held the hope that he was just delayed and that he could and would catch up with his peers eventually. I do know that amazing things are being done today in the field of autism and yes, we will do whatever it takes to help this precious boy learn and grow. Still, when the diagnosis came today, it was like a sharp blow to my heart. Believe me, I have told myself all the pretty words, given myself lots of joy filled pep talks in the past 2 years. I know that so many others have received such a diagnosis and we are certainly not alone. I know that great advancements in this field are occurring all the time and this is not a diagnosis without hope. Still, my mind wanders into a frighteningly dark place where fear and anger and frustration reign supreme. My sister in law did everything right for over a year before Boo was even conceived. She has never been drunk or taken a narcotic. She was healthy and fit, as was my brother. They were married for almost 11 years before the baby arrived. We all waited so long for him and I am fighting the urge to scream out loud at God, "Why?", "WHY?" over and over and over. We are a small family and he is the only child my brother and sister in law will have. Bill's brother and his family have chosen not to see us often...we have never felt as close to them as we would like. I am not putting all the blame on them but their door has never been fully opened to us and probably never will be...for many reasons that we will never understand. I am only bringing this up now because I wanted you to understand that although we have 2 nephews on Bill's side of the family, they have never really been allowed to be a part of our lives nor our children part of theirs. There is no fight to speak of, just disregard and the sad truth that we are not important to them. It is a pain that has been part of our lives for a long time now...but one we have, long ago, come to grips with. So you see? Boo is the only nephew's love we have been allowed to share in, revel in, truly enjoy. We adore him and have become so very close to him. I will always be thankful from the bottom of my heart to my brother and sister in law for giving us this rich blessing. I well remember bargaining with God and begging Him to allow this precious child a future that would be bright and free of such obstacles...knowing all too well that each of us face hurdles that we must overcome. But I am feeling so lost, so raw at this moment. Yes, I am most probably not thinking clearly. I will get by these feelings in a few days and begin to look at the situation with renewed hope. I pray that God will love me enough to forgive my anger and doubt. I pray He will hold my brother and sister in law through this and never leave their side. I pray He will hold my little man's hand and let him know that we are all there for him, now and forever. I will always love this little boy with all my heart. ALL my heart. Thanks to all of you for allowing me this one moment to cry on your collective shoulders. I am far more grateful to you all than I can express.

40 comments:

The Decorated House said...

Oh Sue, I can only imagine how heavy this weighs on your heart. His face is so sweet! He has you and his wonderful parents to help him along. I hope it helped you to just talk about it. We can just keep on praying that he does well!
Donna

Rosemary said...

I am with you. I will say a prayer for you and your family.
I'm sure with all of you and your families support, he will do very well.
You are a wonderful Aunt and person!
Rosemary

CONNIE'S THOUGHTS FROM THE HEART said...

Sue, I am crying along with you right now because I feel your pain and I am so sorry.I know that whatever the problem with your nephew, I know without a doubt that he feel your love and will continue to feel it. It comes through even across these many miles and through this electronic equiptment. I pray God will give you the courage that you need now not only for yourself but for those you love. We may not understand the things that happen in this life but we must go on and make a difference, not for ourselves but for those who are looking to us. I pray for you all, Sue. Please consider yourself hugged and I wish I could be there to do it in person. Even better feel the arms of the Lord around you, He is there, I know. connie from Texas

PEA said...

((((Sue)))) My heart aches for all of you and Boo also. It's always a shock to hear such a diagnosis but you are so right when you say they've come a long way in dealing with autism and such...with the love and support that surrounds him, I have no doubt this little guy will be just fine!! xoxo

Kim - ScrapToMyLu said...

I am so sorry, but he is so lucky to have a family that cherishes him so much. A famous scrapbook artist has a son with Autism. She las alot of information on her site. she has shared her journey with her readers.
http://aliedwards.typepad.com

LivingTheLife said...

Oh! Sue...this seems to be a rather increasing situation in our world today...I'm not sure if at times we weren't aware of it b/c we didn't have the tools or supports out there to identify this situation, so now it seems even more problematic...however, I know there are many ways out there to help your family...many support groups...special needs groups...groups that will help develope a program for him to be successful....I know your nephew will be surrounded w/much love and support....one place you may want to visit is a gal in California I believe...I ran across her blog a few months back and she too has a son that is probably 4 years old and has been diagnosed with autism. She has lots of information she posts from time to time...check her out...or she may know someone else, too...
Boo and your family are all in my prayers...

her blog is..
http://spicysavvysane.blogspot.com

Blessings to you and yours...

LivingTheLife
aka
http://www.tpmom4ever.blogspot.com

LisaOceandreamer said...

My nephew (on G's side) is 9 born Down Syndrome and recently they find he may be autistic as well. He's a loving boy, a funny guy and he's rather smart in many ways. He's well loved - very well loved. Advances have been made, he goes to school and there are many programs available. I am telling you all this because I KNOW this has been a blow to all of you...YET you are right about the strides made. My heart breaks for the agony you all are facing now - just trust in your love for him - for his parents and all the programs out there. I know there is a blog about a mom with an autistic child, I just wish I could remember which one.
Never apologize for speaking your heart here sweet Sue....it really can be cathartic and you know we are all here to listen.
I am hugging you right now.
Love,
Lisa
XOXO

LisaOceandreamer said...

by the way, no child could ask to be surrounded by any more love. You are a fantastic Aunt and Uncle that no matter what, he knows!
XOXO

Valerie said...

my favorite line from a very old hymm: "His eye is on the sparrow, and i know He watches me."

it will take time and His grace to carry all of you through this. and believe me i SO understand the anger and frustration of "why?" and the family who turns their back on you...just remember i love you, and will keep you and this family in my prayers.

he has the sweetest smile.

carolyn said...

I'm so very, very sorry for your news but there is hope, I don't actually know anything about autism but it might help if you took a look at a couple of blogs (there in my side bar) Both Julie of Little Cotton Rabbits and Maddy Dunster have autistic sons who they write about on their blogs plus other aspects of their lives. I urge you to take a look at Maddy's recent post about the progress of her son Bailey I promise it will lighten your heart.

jafabrit said...

oh susie, I am sending a HUGE HUG!!!!!!! Sometimes we are so depressed because we don't want those we love to face such difficulties. It's not a path one chooses, but I have a feeling this beautiful child will do fine with such love around him. Blessings in this life come in strange unexpected ways :)

Jen said...

Hugs to you Sue. Boo, will be a fighter...seems that he's got some great support around him with you and Bill and his parents. Ashame that the doctors weren't "in tune" so to speak with it earlier.
I hope it all goes well.

smilnsigh said...

Oh my Dear, I am so sorry for all these things. I see how many things converge, to make you very, very sad.

I wish I could hold you and hug you gently and just let you feel all of it and get through it, with my arms around you. I know you have plenty of arms to enfold you. But I wish mine could also.

Mari-Nanci

Robin said...

Sue - Just sent up a prayer for Boo, you and the family. God has given you such a blessing with Boo and has given Boo a blessing by giving him such a loving family. All will be well. Just lean on God and he will guide the way.

Love, Robin

Betty Jo said...

Oh Sue, All I can do is weep over your pain and that of your beautiful, precious nephew's parents. I'm sure you are all devastated over this sad news. But, as you said, you are definitely not alone. I too pray for God's comfort, peace, and renewed hope during today and the days ahead. What a lucky little guy to have such a wonderful loving family to help see him through this. xoxo

Dawn Bibbs said...

Sue, I commend your courage for sharing this with us. Most of us, you've never even met. Yet you feel comfortable enough to know that we ARE here for you.

I can't imagine how you must feel. I only know what feelings I would have. However, your questioning God and praying that He will not hold your temporary "ill" feelings against you, are all normal. Remember, God not only gave us HAPPY emotions, He gave us those other emotions too. And that being the case, it is totally normal and forgivable in His eyes.

You and your family will be in my thoughts and prayers.

Love ya!

Carolyn said...

Oh, I am sitting here crying as I respond to your news of precious lil Boo. You related your thoughts and emotions so beautifully amidst this ever-so-difficult and painful time for all of you in your family. Am so glad that you have allowed yourself this time to just say what is one your heart. And all of the well meaning offers we could make re the possibilities available for him, have already crossed your mind. I didn't really know you yet, as am a new blogger, and Betty Jo just emailed me to send me your way. But it seems that this is the time where we hug you, and cry with you. I love special needs children, and have been SO deeply touched by so many, along with the wonderful families that they seem to be born into. I can see that having you as his Aunt is just who this lil darling boy will need, as, I suspect, are his parents. I wish I could hug you ALL now, and especially Boo. I sure will be back ~ and you have one more among many, who are hopeful re Boo, and hurting with you now. Carolyn

The French Nest said...

Sue,

The love you have for this little boy is amazing. You are a wonderful person and Aunt. My prayers go to you and your family.

xo Kate

farmwifetwo said...

There will come a day and it'll simply be what it is. And you'll see the child first and not the dx.

But come and visit... wade through my blog... there's good time.. and not so good times... but in the end... What is "normal" anyways??

S.

Susie said...

Hi Susie Q,
I know this had to be very difficult news to hear about one you love so dearly. My daughter works in the field of early childhood ed and says that there are more and more children being diagnosed with autism all the time. They now more what sings to look for and finding this at age four, there is great hope that he will do just fine.
((hugs))
xoxo

Paula said...

"Here my prayer, O Lord, listen to my cry for mercy. In the day of my trouble I will call to You, for You will answer me." Psalm 86:6-7
Sue, I hear you heart breaking. There are times when there are no words. The most meaningful & most healing prayer I've every prayed was when I could do nothing but cry. Your soul is groaning just as mine was that day. God hears. God listens. Even when we're angry with Him. Thanks for being vulnerable and sharing your hurts with us.
Paula

Linda aka yellowroseli said...

Sue,
I feel your hurt. And we usually do not think too good when something like this is dropped on us. God will forgive you for your feelings. He understands. Boo is so blessed to have you in his life. You will be a great help to him now and in the future. My daughter works with
pre-school children with autism. The field is advancing quickly. I pray that Boo will respond to early intervention. I will have our Church pray for Boo and his family. Here's a Hug for you()()().

TK Angels said...

Boo is so cute and when I have seen him he is such a loving little boy. I see the love in his eyes for you and Bill, his mom and dad, his grandmother, Gracie and Dan. He is precious. I know you've had concerns and I am so sorry with the out come. Little Boo has such a wonderful family.

You know that we are here for you and I will call you later tonight.

LOve,
Terri

Mom2fur said...

Boo is just precious. I'm so sorry about the diagnosis...although I did read "most probably" and "maybe." I'm going to make my own diagnosis...with all the love around you, Boo will 'most probably' surprise everyone and lead a very rich and rewarding life!

Sugar Bear said...

This is such a very difficult thing to be dealing with. You are more then entitled to your feelings and to express them on your blog. Even though we haven't all met in person, our blogging world is full of support, friendship, and love. I will pray for Boo and for all of you.
Karla

PAT said...

Sue, I just now came by, so am just seeing this.

Just about a year ago, we were faced with a blow that rocked us to our foundation, when we learned about our grandson. I know that feeling of helplessness. And my heart aches for you.

I'm sending you hugs and good thoughts!
Pat

Rabbit Hill Creations said...

Much hugs to you Sue. Boo has the best support system any child can have, you and your family. Sending prayers your way. Toni

Andi said...

My dear Sue, I want you to know that precious little nephew of yours is so lucky to have you as his Aunt and be surrounded by so much love. Whatever needs he may have, always know he is a perfect child of God. And God loves you so much he will forgive any feelings of anger or doubt you may have. My heart goes out to you my friend. Love, Andi

Southern Heart said...

My heart aches for you...it is so hard when we don't understand why things happen. Please know that our love and prayers go out to this beautiful boy, you, and all of your family.

Love, Andrea

Pamela said...

I have a nephew with autism. He is in his late 20's now.

I encourage all of you to find the best autism center and be as proactive as possible.

He can and will be productive if your will is stronger than the autism.

prayers.

Tammy518 said...

Sue, I know that you and your family will do the best and search for the best for sweet little Boo. What a cutie! It's so great that your family is close. I'm sure that's such a comfort to your brother and sister-in-law.

I can understand what you're saying about Bill's family. My husband's family is pretty much the same way. His parents visit about once a year, but his sisters have each been to visit us once, and we've lived away for 19 years! Calls are very infrequent; maybe once every couple of months if we're very lucky (his parents included). It does hurt.

Please don't apologize for speaking what's in your heart. We all love your funny posts, but we're here for the serious topics too. Hugs to you, Boo, and the rest of your family. I'll say a little prayer for Boo.

Robin Sherwood frecklefarm said...

I am here with you Sue. Crying too.
What more can be said.
God bless.
love
Robin

Blue the Spa Girl said...

There is perfection in all of God's work. I have no doubt. Boo is absolute perfection, you know that.
A client told me tonight that her doctor recommended amniocentisis, to determine if her fetus was healthy. Why? She wondered to the doctor. So you can decide he said.
There is nothing to decide, she replied. My baby, is welcome in my world no matter what his circumstances.
I am so proud of people who realize this.
Praying for you and your family, Boo is such a sweet loving soul, you can tell by that smile.
xoxo
Blue

Cheryl Wray said...

Oh sweet friend...I have been "out of the loop" because we are at the beach and I've only gotten online briefly to post a few posts, but I decided to pop by here tonight because I've missed reading your blogs this past week. And I'm SO glad I did!
I will be holding up Boo in my prayers, and also his parents who I know must be really struggling right now with understanding what this diagnosis will mean. I will pray for strength for them! But I know that Boo will continue to be a blessing and a joy to all of you! In fact, an even more special one!!!

Cassandra said...

I'm so sorry Sue. We have an Autistic child in our family and he has so many wonderful gifts to offer us. He is the sweetest, most loving boy you will ever meet. Your nephew is lucky to have such a warm and supportive family.

Sue said...

Sue,
How heart breaking. My thoughts and prayers are with you and yours during this difficult time.
Sue

daisy cottage said...

((Sue))) What a beautiful boy he is! I can only imagine the emotions you must be going through. You are in my prayers and I know that with the precious love from his family, including yours, Boo will blossom and grow, continuing to bring you all great joy and comfort.And he will know of your love every day of his life. God bless you all.
Kim

Gretchen said...

Dearest Sue,

I'm so sorry I've been in the midst of summer visits and b'day madness that I am just now making the rounds with my bloggy friends. I just want to give you a hug and tell you how sorry I am. To a lesser degree, I am familiar with the walk that your relatives are facing. In fact, after the most recent batch of testing for History Boy a year and a half ago, I grieved again. I grieved because I realized that we are not at the beginning of the pain, nor at the end, but smack in the middle of all the adjustments, changed visions and plain hard work associated with raising a child with any sort of challenge. Our challenges are mild compared to what so many face, but they still count, and are hard for us. In fact, sometimes mild anything is difficult to have because the "disorder" is almost invisible, so expectations of that individual remain unchanged by those who don't know the challenge he/she faces.

I do know this. And this is just my truth, but I love you and want to share. I know God is good. I know that your nephew is in the palm of His hand. I know that this situation is a perfect opportunity to let go of pre-conceived notions and dreams and let this boy be who God designed him to be. Tough lessons, yes. But, knowing that He loves my son even more than I could makes things easier when we have hard day. You are in my prayers, dear friend. love, gretchen

Mama P said...

I can only echo what so many others have, and that's that I am with you in thoughts and prayers. I also know that God doesn't make any junk. Your newphew will shine to his fullest potential, just not to the potential of what others wish he could have been. He will be the best he can be, and with the love of you guys, that's going to be pretty spectacular. (And of course this is a time for mourning. I'd be devastated. But I also have this kick ass side of me that's like "Fxxx this. Autism or not, I am going to fight this thing tooth and nail and no kid of mine is not going to be the best he can be." So many smiles for you as you deal with this. He is a beautiful boy.

Sheila said...

Dear Sue, I'm just now today catching up on my blog-reading.. I know I'm terribly behind, but I just wanted to let you know that your family is in my thoughts and prayers. Boo is such a beautiful child, and I can only imagine how heartbreaking it is to find out news like that. I know several families with autistic children, and they do wonders with them in the special ed programs at the school, etc. He's lucky to have such a wonderful loving, supportive family!