This week I became overwhelmed. The move is now official and I am faced with the reality that between now and July 25th we will say goodbye to our friends and community of 3 years, pack up our home, transfer Ryan to a new school district, unpack at our new parsonage (nothing like moving into a new home sight unseen to increase this FX carrier momma's anxiety), attend PNW UMC Annual Conference in Pasco, WA June 20-24th, start our work at a new church July 1st, then after being there only 3 weeks leave and fly across the country to NFXF conference.
The mere thought of this shut me down yesterday and for about 90 minutes, during our drive to Olympia I told Rene' I didn't think we could do it. Wise as he always is, he said "I'm happy with whatever you decide". I say wise not because he should always agree with me (he doesn't) and not because I am bossy (sometimes I am) but because he knows me. He knows that I will be gung ho about something and move mountains to make it happen and then, right when all my hard work is coming to fruition I hesitate. It's kind of like a "this is too good to be true and it completly overwhelms me" kind of feeling.
So this morning when I excitedly told him about the amazing Fragile X flip flops I just ordered that we will pick up in Miami, he wasn't surprised at all when he asked with a smile, "I guess we are going to conference huh?" Smart.
So, you ask, "Why is going to the National Fragile X Foundation Conference so important to you?" Well, let me tell you.....
*I believe I owe it to my family to not take the easy road and say I'm too busy this summer*
For the 5 days of the conference I will have access to knowledge and community...both of which I need to succeed at this monumental task of being a Fragile X Mom. Twice in R's life now I have had a Dr. look me in the eye and tell me that I should put my son in an institution due to his behaviors. Twice I have chosen to take him home instead. The first time I thought it could do it on my own. The second time I knew I couldn't. I need community to help me raise my son, our neighboorhood, school, church, government, FX, family...I need them all. It's a hard thing to admit and even harder to type. I can't do it by myself and I have to do what I hate doing the most, asking for help.
So in the last few weeks (since Dr # 2 recommended institution) I have started asking. I am asking for help raising funds, I am asking for help from goverment programs, I am asking for help from friends. At conference I will recieve help from educators, therapists, psychologists, physicians, and most importantly other families. Others who have been where I am, in the trenches, trying to do it alone, offering me a hand. Once every 2 years we can be a part of that community for 5 days, allowing us to make contacts, gain confidence with knowledge, laugh at our similarities.
Thank you community for your help.
Monday, May 14, 2012
Saturday, December 24, 2011
Breath of Heaven, hold me together.....
Christmas Eve morning, I am spending the day with last minute preparations for Christmas, a few batches of chex mix to make, presents to wrap, then Christmas Eve service tonight at church.
As I begin working in the kitchen a line of a song on the Christmas CD playing in the next room takes my breath away....
"Do you wonder as you watch my face
If a wiser one should have had my place?"
If a wiser one should have had my place?"
WHAM, a Christmas song just slapped me in the face with my biggest unspoken fear, am I good enough for this role in life I have fallen into?
- Being mom to a special needs child feels completely overwhelming, and I daily I want to quit. The guilt of that is almost impossible to type. But also brings me unspeakable joy daily, so much joy that I would die for it. I wonder how Mary felt.
So God tells Mary that she, a young unmarried woman is going to give birth to the son of God. I'd like to think that her first uncensored reaction was "Holy S*^#! (I know, I know, I am a terrible pastors wife, but I warned you when I started this blog that it would be well, raw) Anyway, that was my reaction too. Like Mary, over time it seemed to morph into a do-able thing.
....but Mary kept all these things in her heart and thought about them often.......
"I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone?
Be with me now, be with me now"
In a world as cold as stone
Must I walk this path alone?
Be with me now, be with me now"
So Mary was like me, keeps it inside and thinks about it often, I wonder is she obsessed about it at night like I do? Worried about how it would affect her other children, how she would be able to possibly be knowledgeable enough, would her and Joseph ever get any "alone time"???
"...hold me together...lighten my darkness...help me be strong...help me be....help me..."
Maybe after some sleep and renewed strength, Mary, like me faced the next day a little stronger.
"But I offer all I am
For the mercy of Your plan
Help me be strong"
Mary's story brings me peace this Christmas Eve. It gives me faith that if she could do it, I can do it.....a sisterhood of girls who have doubts about the tasks God has entrusted them with....but are willing to go the distance.....not knowing what the future holds.....
Merry Christmas to the Sisterhood!!
Breath of Heaven (Mary's Song) Amy Grant
I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father, You have come
And chosen me now to carry Your Son
I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone?
Be with me now, be with me now
Breath of Heaven,hold me together
Be forever near me, breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven
Do you wonder as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of Your plan
Help me be strong, help me be, help me
Breath of Heaven, hold me together
Be forever near me, breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven, hold me together
Be forever near me, breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven, breath of Heaven
Breath of Heaven
Tuesday, November 1, 2011
The French Boy
A few years ago I reluctantly took my boy on a family vacation. My reluctance was not the trip itself; a gift of a week long vacation in a gorgeous rental home overlooking the ocean in beautiful Victoria B.C. was wonderful. My reluctance was wondering how this trip would work out: change of routine, long car trip, ferry ride, going thru customs, sleeping in a strange house full of breakable objects, extended family having to deal with the difficulties of Fragile X that I was more comfortable keeping within the confines of my own home. But common sense aside, away we went......
The trip was as I expected, stressful. The boys routine completely blown, sleeping on the couch off the study where he was sleeping, worrying about something getting broken. One day, in an attempt to escape the house for awhile we went to a nearby park. In the park their was a water fountain, with water that sprayed out of the pavement for the children to run through. He was thrilled, he loves water fountains, and this was the perfect set up for him. I sat on the bench and watched him play, thankful for the peace. Alongside him were a handful of other children. Two little girls, a few years older were nearby my son. These typical giggling little girls loved the fountain, but did not want to push the button that started the sprayers because they didn't want to get too wet. They decided the boy should be the one to push the button (it was quite obvious at this point that he didn't mind getting wet) and approached him with their proposition. I felt myself tense up, I was very familiar with how this was going to play out.....they would try to engage him, realize he was "different" and that was usually the end of that. Until this point I had never seen him actually play with other children. The girls approached, and plead their case to my son, "Will you go push the button for us"? I held by breath, and then heard the expected non-verbal happy babbling that was his response. I watched the girls faces for their reaction, ready as always to jump in like a mama lion, explain his inability to speak, defend him from any teasing etc etc. But instead I heard more giggling, "He speaks French" more giggling, then they grabbed my sons hand and walked him closer to the button, mimicked pushing it, and much to their delight he complied, over and over and over. His love of water and repetition was really working in every one's favor!
I watched with tears in my eyes as he played for the first time with other children in this magic fountain. The water seemed to wash away his inhibitions. The water also washed away the telltale wetness of his shirt collar that usually alerted the other children to his "differences". And bless you bi-lingual Canada for taking away the perceived "language' barrier.
Looking back I realize that nothing "magic" happened here. The fountain didn't change anything about my son, it only changed others perception of him. I wish I could put this magic filter on the world all of the time.....
Nature Boy- Nat King Cole
There was a boy
A very strange enchanted boy
They say he wandered very far, very far
Over land and sea
A little shy
And sad of eye
But very wise
Was he
And then one day
A magic day he came my way
And while we spoke of many things, fools and kings
This he said to me
"The greatest thing
You'll ever learn
Is just to love
And be loved
In return"
The trip was as I expected, stressful. The boys routine completely blown, sleeping on the couch off the study where he was sleeping, worrying about something getting broken. One day, in an attempt to escape the house for awhile we went to a nearby park. In the park their was a water fountain, with water that sprayed out of the pavement for the children to run through. He was thrilled, he loves water fountains, and this was the perfect set up for him. I sat on the bench and watched him play, thankful for the peace. Alongside him were a handful of other children. Two little girls, a few years older were nearby my son. These typical giggling little girls loved the fountain, but did not want to push the button that started the sprayers because they didn't want to get too wet. They decided the boy should be the one to push the button (it was quite obvious at this point that he didn't mind getting wet) and approached him with their proposition. I felt myself tense up, I was very familiar with how this was going to play out.....they would try to engage him, realize he was "different" and that was usually the end of that. Until this point I had never seen him actually play with other children. The girls approached, and plead their case to my son, "Will you go push the button for us"? I held by breath, and then heard the expected non-verbal happy babbling that was his response. I watched the girls faces for their reaction, ready as always to jump in like a mama lion, explain his inability to speak, defend him from any teasing etc etc. But instead I heard more giggling, "He speaks French" more giggling, then they grabbed my sons hand and walked him closer to the button, mimicked pushing it, and much to their delight he complied, over and over and over. His love of water and repetition was really working in every one's favor!
I watched with tears in my eyes as he played for the first time with other children in this magic fountain. The water seemed to wash away his inhibitions. The water also washed away the telltale wetness of his shirt collar that usually alerted the other children to his "differences". And bless you bi-lingual Canada for taking away the perceived "language' barrier.
Looking back I realize that nothing "magic" happened here. The fountain didn't change anything about my son, it only changed others perception of him. I wish I could put this magic filter on the world all of the time.....
Nature Boy- Nat King Cole
There was a boy
A very strange enchanted boy
They say he wandered very far, very far
Over land and sea
A little shy
And sad of eye
But very wise
Was he
And then one day
A magic day he came my way
And while we spoke of many things, fools and kings
This he said to me
"The greatest thing
You'll ever learn
Is just to love
And be loved
In return"
Monday, October 17, 2011
My Grandparents, My Mentors
In 1960 my uncle David was born in Fargo, North Dakota. My grandparents were told to put him in an institution. They didn't take him back to the doctor, instead they took him home and loved him. There was no Fragile X diagnosis, or even Intellectual Disability. They were told their son was Mentally Retarded and there was no treatment. There was no developmental preschool. No OT, PT or Speech. No medication therapies to try. No respite care. No pull ups...when I asked my Grandma how she managed potty training she said "I rinsed out a lot of shorts".
I remember the stick figure drawings and sketches my grandfather made for a picture schedule and later a grocery list for Dave. No PECS, no computers. They taught him to read a bus schedule and ride the bus to work independently. He has worked for a local sports pub as a valued employee for over 20 years. He was able to buy his own condo, next door to my grandparents with a special loan for persons with disabilities. I guess what I'm trying to say is that they did an incredible job with pretty much no help.
When they were still alive I called them whenever I needed advice. Now that they are both gone, whenever I have a moment when I feel inadequate to manage one of the curve balls that Fragile X throws my way, I just try and figure out what they would have done.
I'm a pretty lucky girl!
"I was sustained by one piece of inestimable good fortune. I had for a friend
a man of immense and patient wisdom and a gentle but unyielding fortitude.
I think that if I was not destroyed at this time by the sense of hopelessness which these gigantic labors
has awakened in me, it was largely because
of the courage and patience of this man.
I did not give in because he would not let me give in."
Thomas Wolfe
I remember the stick figure drawings and sketches my grandfather made for a picture schedule and later a grocery list for Dave. No PECS, no computers. They taught him to read a bus schedule and ride the bus to work independently. He has worked for a local sports pub as a valued employee for over 20 years. He was able to buy his own condo, next door to my grandparents with a special loan for persons with disabilities. I guess what I'm trying to say is that they did an incredible job with pretty much no help.
When they were still alive I called them whenever I needed advice. Now that they are both gone, whenever I have a moment when I feel inadequate to manage one of the curve balls that Fragile X throws my way, I just try and figure out what they would have done.
I'm a pretty lucky girl!
"I was sustained by one piece of inestimable good fortune. I had for a friend
a man of immense and patient wisdom and a gentle but unyielding fortitude.
I think that if I was not destroyed at this time by the sense of hopelessness which these gigantic labors
has awakened in me, it was largely because
of the courage and patience of this man.
I did not give in because he would not let me give in."
Thomas Wolfe
Sunday, October 16, 2011
Why I Am Starting A Blog
I have been thinking about starting a blog for quite a while, for some reason it has taken me several years to actually get around to doing it. I want to document the stories of our family, and our life with Fragile X Syndrome, Autism, and a few other medical diagnosis thrown in for good measure. We seem to have more than our fair share, so it seems like we should have more than a few good stories.....we shall see.
My first memory of Fragile X was at age 5. Road trip with my family (dad, pregnant mom and toddler brother) to visit my grandparents and my uncle David. David is my fathers youngest sibling. The youngest of 6 siblings, and only 9 years my senior. Dave would have been 13 at the time of our visit, and I could not have been more thrilled with my playmate. Dave was perfect in my eyes. He had bright red hair, a dry sense of humor, and never seemed to tire of my 5 year old questions. Though he was a "big kid", he liked playing with me. We were quite a duo that week, Dave taught me so many things. I had a new found advantage with my tall companion, we could reach things before unattainable, we got ourselves into a fair share of mischief (and cookies). Dave had an impressive lunch box collection. He had an 8-track tape player and we played Kenny Rogers Greatest Hits and "Every Elvis Album Ever Made" until my grandpa offered us a quarter each if we would turn it off. He taught me all about the "cool shows" on television. No more Looney Toones for me, I was now savvy to Batman, Merv Griffin, and "The News".
I reveled in the week, being with Dave was like being with royalty. Whatever food Dave wanted, we just had to ask and we got it. If we were at the store and we wanted to go home, we got to go home, no questions asked. Dave was my pass to everything wonderful in the world. He was perfect in my eyes. Then one afternoon my grandma had a friend over for coffee. I overheard them talking in hushed tones about Dave. I stood as still as I could as to not be detected in the hallway as I eavesdropped, I heard my Grandmother tell her friend that Dave was "Retarded". I felt that I now understood, this must be something very special about Dave. This was why he had such a wonderful life, and my grandparents adored him so much. It all made perfect sense in my 5 year old world.
The next day we left for home. I didn't want to leave Dave and our new found friendship. He gave me a parting gift, a Scooby Doo lunch box from his prized collection. Included was a orange plaid kitchen towel donated by my grandmother and very specific instructions from Dave about not letting my lunch box get wet and several reminders what he had taught me about rust and the damage it could do to my prized lunch box. I dutifully dried the rain drops off my lunch box as we drove away in our station wagon with wood paneling, and I watched as Dave's red hair disappeared out the back window.
Sometimes I wish I could go back in time 37 years, back to when I had this wonderful week with Dave. Back to when a child's wisdom knew how wonderfully special Dave's lessons would be to my life.
My first memory of Fragile X was at age 5. Road trip with my family (dad, pregnant mom and toddler brother) to visit my grandparents and my uncle David. David is my fathers youngest sibling. The youngest of 6 siblings, and only 9 years my senior. Dave would have been 13 at the time of our visit, and I could not have been more thrilled with my playmate. Dave was perfect in my eyes. He had bright red hair, a dry sense of humor, and never seemed to tire of my 5 year old questions. Though he was a "big kid", he liked playing with me. We were quite a duo that week, Dave taught me so many things. I had a new found advantage with my tall companion, we could reach things before unattainable, we got ourselves into a fair share of mischief (and cookies). Dave had an impressive lunch box collection. He had an 8-track tape player and we played Kenny Rogers Greatest Hits and "Every Elvis Album Ever Made" until my grandpa offered us a quarter each if we would turn it off. He taught me all about the "cool shows" on television. No more Looney Toones for me, I was now savvy to Batman, Merv Griffin, and "The News".
I reveled in the week, being with Dave was like being with royalty. Whatever food Dave wanted, we just had to ask and we got it. If we were at the store and we wanted to go home, we got to go home, no questions asked. Dave was my pass to everything wonderful in the world. He was perfect in my eyes. Then one afternoon my grandma had a friend over for coffee. I overheard them talking in hushed tones about Dave. I stood as still as I could as to not be detected in the hallway as I eavesdropped, I heard my Grandmother tell her friend that Dave was "Retarded". I felt that I now understood, this must be something very special about Dave. This was why he had such a wonderful life, and my grandparents adored him so much. It all made perfect sense in my 5 year old world.
The next day we left for home. I didn't want to leave Dave and our new found friendship. He gave me a parting gift, a Scooby Doo lunch box from his prized collection. Included was a orange plaid kitchen towel donated by my grandmother and very specific instructions from Dave about not letting my lunch box get wet and several reminders what he had taught me about rust and the damage it could do to my prized lunch box. I dutifully dried the rain drops off my lunch box as we drove away in our station wagon with wood paneling, and I watched as Dave's red hair disappeared out the back window.
Sometimes I wish I could go back in time 37 years, back to when I had this wonderful week with Dave. Back to when a child's wisdom knew how wonderfully special Dave's lessons would be to my life.
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