Writings that I've found inspiring, more video footage of my lovely bunch and links to other sites that might be helpful.
During the first few weeks at home with Charlie, I desperately searched the net looking for 'help'.
I read an awful lot of medical information that I wasn't really ready to take in.The following three pieces of writing were the probably the most helpful.
The first doesn't necessarily reflect my position but despite it being a little 'over the top' in it's ending, it really made me smile. The paragraph before the ending is exactly how I feel about parenting my children and how living life 'in slow motion' actually has rewards unrecognised by parents of more typical children.
The second was given to me as a gift when my girls were younger, a long time before Charlie. I found out much later that the author was actually reflecting on her experience with her son who also had Down Syndrome. Learning this made it all the more special and we decided to have it read at Charlie's Christening. I would dearly have loved to read it myself but in practising I reached the same line everytime and dissolved into tears. I did not want my little boy's special day to be remembered for that! So Father Joe, our parish priest kindly agreed to read it for me and held it together just slightly better than I would have done! It remains extremely special to me.
The final one still makes me cry as much as the first time I read it. It's a wonderful moving true story.
The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "This one gets a daughter. The Patron saint will be Cecelia" "This one gets twins. The Patron saint will be Matthew" "This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Mummy" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice!"
WELCOME TO HOLLAND
by Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel -
It's like this ..... When you are going to have a baby it's like planning a fabulous vacation trip - to Italy say. You buy a bunch of guide books and make wonderful plans. The coliseums, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says "Welcome to Holland".
"Holland!!!" you say, "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy! all my life I've dreamed of going to Italy"
But there's been a change in flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible disgusting place full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books and you will learn a whole new language, and meet a whole new group of lovely people you would never have met otherwise. It's just a different place. It's slower than Italy, less flashy than Italy but after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has Tulips, Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. The rest of your life you will say
"Yes, that's where I was supposed to go. That's what I had planned".
The pain of that will never go away, because the loss of that dream is a significant loss. But if you spend your whole life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Shay's Story
At a fundraising dinner for a school that serves learning-disabled children, the father of one of the school's students delivered a speech that would never be forgotten by all that attended. After extolling the school and its dedicated staff, he offered a question. "Everything God does is done with perfection. Yet, my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is God's plan reflected in my son?"
The audience was stilled by the query. The father continued. "I believe," the father answered, "that when God brings a child like Shay into the world, an opportunity to realize the Divine Plan presents itself and it comes in the way people treat that child."
Then he told the following story: Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they will let me play?" Shay's father knew that the boys would not want him on their team. But the father understood that if his son were allowed to play it would give him much-needed sense of belonging.
Shay's father approached one of the boys on the field and asked if Shay could play. The boy looked around for guidance from his teammates. Getting none, he took matters into his own hands and said, "We are losing by six runs, and the game is in the eighth inning. I guess he can be on our team and we'll try to put him up to bat in the ninth inning."
In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. At the top of the ninth inning, Shay put on a glove and played in the outfield. Although no hits came his way, he was obviously ecstatic just to be on the field, grinning from ear to ear as his father waved to him from the stands.
In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base. Shay was scheduled to be the next at-bat. Would the team actually let Shay bat at this juncture and give away their chance to win the game?
Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball. However, as Shay stepped up to the plate, the pitcher moved a few steps to lob the ball in softly so Shay could at least be able to make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly toward Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball to the pitcher.
The pitcher picked up the soft grounder and could easily have thrown the ball to the first baseman. Shay would have been out and that would have ended the game. Instead, the pitcher took the ball and threw it on a high arc to right field, far beyond reach of the first baseman. Everyone started yelling, "Shay, run to first, run to first." Never in his life had Shay ever made it to first base. He scampered down the baseline, wide-eyed and startled. Everyone yelled, "Run to second, run to second!"
By the time Shay was rounding first base, the right fielder had the ball. He could have thrown the ball to the second baseman for a tag. But the right fielder understood what the pitcher's intentions had been, so he threw the ball high and far over the third baseman's head. Shay ran towards second base as the runners ahead of him deliriously circled the bases towards home. As Shay reached second base, the opposing shortstop ran to him, turned him in the direction of third base, and shouted, "Run to third!" As Shay rounded third, the boys from both teams were screaming, "Shay Run home!" Shay ran home, stepped on home plate and was cheered as the hero for hitting a "grand slam" and winning the game for his team. "That day," said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of the Divine Plan into this world."
Obviously mothers and fathers of special children sometimetimes look to one another for support. I have joined communities online such as 'unomas21' and 'trisomy21online' and have found both to be really supportive and informative. On unomas I had a reply to a query about multiple disabilities from a woman named Jennifer. I had asked if any other mums had a variety of diagnosies and explained about the twins. It turned out that Jennifer had twin boys, Avery (who has DS) and Bennett (who doesn't). Jennifer gave me her web-site address (www.jennifergrafgroneberg.com). She is a beautiful and prolific writer and it is well worth checking out her site. For me though, with my experiences with the girls it was the following excerpt that had me reaching for the tissue-box. She called it simply 'A Good Night':
A Good Night
by Jennifer Graf Groneberg
Last night I was tucking the little boys in bed, Bennett in the bottom bunk, Avery in a twin mattress on the floor next to him. Sometimes Bennett climbs down and joins Avery and I find them curled into each other, a tangle of arms and legs in a nest of blankets.
I made sure Avery had his little puppy, Bennett his stuffed monkey. I gave each boy his blanket. Each a kiss, then love you to Bennett, love you to Avery. I turned toward the door, making my way by the light of the glowing turtle on the dresser, when I heard a soft voice that I didn’t recognize.
Ahluvyou.
I swung around and there was Avery, smiling at me.
He is almost three. Until now, there were no words, no mama or dada. I had come to think of him as my quiet boy, though I would sometimes catch him saying his sounds in the stillness of the early morning, his blanket over his head so no one could see. He was saving them up until he was ready, saving them up for me.
Useful links:
Our Montages
The first montage I ever put together, 'What is a Child?' is on Charlie's homepage. It's the original and the best. Montages quickly became something of an obsession, although these will probably be the only ones I ever do that were intended to be slightly more meaningful than a moving photo album:
My Three Babies
A celebration of the children which demonstrates that sometimes the rest of us take life a little too seriously:
<a href="http://www.onetruemedia.com/shared?p=173f45758255fdd176bd7b&skin_id=1009&utm_source=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/media/11/27bea9086347c36b/643dbb5712728cac_thumb.jpg" border="0" alt="View this video montage created at One True Media" title="View this video montage created at One True Media" ><br>My Three Babies</a>
Charlie's Miracle
A birthday montage to celebrate our first year with our little man:
<a href="http://www.onetruemedia.com/shared?p=17f94099b491678216e074&skin_id=1009&&utm_source=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/media/11/27bea9086347c36b/9d47c2d5c4929f67_thumb.jpg" border="0" alt="View this video montage created at One True Media" title="View this View this video montage created at One True Media"><br/>Charlie's Miracle</a>
If Carlsberg made Daddies
Paul's Valentine's present for being such a lovely dad!:
<a href="http://www.onetruemedia.com/shared?p=1ed9c2b3511d056fb62657&skin_id=1009&utm_source=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/media/11/27bea9086347c36b/8f10607738963a77_thumb.jpg" border="0" alt="View this video montage created at One True Media" title="View this video montage created at One True Media" ><br>If Carlsberg made Daddies...</a>
and finally:
You'll be in my Heart
No good reason other than working out how to upload video rather than stills and suddenly remembering the lyrics to this song!:
<a href="http://www.onetruemedia.com/shared?p=222b9ea49cf9e34f49474e&skin_id=1002&utm_source=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/otm_site/frame?media=/media/11/27bea9086347c36b/37385d42e521a66f&frame=6" border="0" alt="View this video montage created at One True Media" title="View this video montage created at One True Media" ><br>You'll be in my heart!</a>
Other Montages
This is Caitlin's favourite montage and she asks me to find it for her everytime she uses the computer. 'Find Hannah please!'. A few times she surprised me whilst watching it, making comments along the lines of - 'That's Hannah, she's a bit like Charlie isn't she? Yes!' I don't know if she means small or...something else! Hannah is gorgeous! I heard her mum, Jo on a radio broadcast some time ago. She's obviously every bit as proud of Hannah as we are of Charlie and with good reason. Here she is!
<a href="http://www.onetruemedia.com/shared?p=258ef97f9622a04e5532f&skin_id=0&utm_source=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/otm_site/frame?media=/media/1/00f440495ad65608/53d3a393aa918364&frame=7" border="0" alt="View this video montage created at One True Media" title="View this video montage created at One True Media" ><br>Hannah doing nursery rhyme</a>