Sunday, December 23, 2007

We have a surgery date!

So, Miss Paige will be holding out for the 2008 model of hip - her surgery is scheduled for January 4th.

I'm looking forward to the day, so that we can finally get it behind us - these last three months in a body cast were a surprise for us - and, had we known this would have happened, surgery would have taken place sooner for her, so that all of this could have been healing time.

Her surgery will be a long one - between 7 & 9 hours if all goes well. We are praying that she won't have any of the complications that we have been warned about - severe blood loss, infection, etc. And, if she does have them, we pray that the doctors who care for her will be prepared to deal with them.

Although its been quite a journey so far, I am also very grateful - it could have been worse. Through it all, Paige has remained her sweet, happy self for the most part. I have loved the extra time I have spent with her, and have felt so close to her as I laid down beside her on the floor and just "chatted" so many times.

Just as it is a celebration of humility in my church for a bishop to wash the feet of his parishioners, it is that same celebration of humility and joy that makes it so easy to care for Paige - to give her sponge baths, and to eat our dinner on the floor beside her so we can all eat together.

It was not a burden to bundle her up on that cold, cold night and put her in her wheelchair, and plow through the snow to watch the parade - it was our great privilege, and we did it with the knowledge that we are very, very blessed to be a family who loves one another, and who clapped and waved and laughed at Santa as he waved to the crowd.

Paige has been so healthy this fall - not a single runny nose, not a cold, etc. Her skin has held up well with this cast - there have not been any tender spots that we have had to worry about.

I have rather enjoyed sleeping downstairs with her - when this is all over, I will miss waking up to cover her up, or just to watch her sleep for a while, to listen to her breathing, and to lift my eyes to sky and thank God, over and over again, for the gift of her.

And, I daresay my husband has made himself quite comfortable having a room of his own for the first time in nearly 20 years!! He has set it up like quite the bachelor pad - with a stereo for his old record collection, and sprawled across the whole bed like he owns it :)

Even though he says he misses me, no one has jabbed him in the ribs and told him to stop snoring or to get on his own side of the bed, or to turn down the radio or give up some blankets for quite some time!

The saddest casualty for me has been that we have had to cut her hair - it was getting so matted and tangled when she would spend long periods of time in her wheelchair or on her back - and it was just impossible to manage - we have to wash it hanging over the bed, and she was very upset at me as I tried to brush it out every day.

So, about 12 inches of it has come off - it is no longer down past her bum, but about halfway down her back. My heart still tugs when I look at it, although she seems rather unaffected by the whole experience, except hair care is much easier now.

I am heading into our Christmas celebration with a happy heart - so grateful for so many things in my wonderful community of T21 sisters, my children, my husband, my sister, my dear friends...

Sunday, December 16, 2007


Annette passed away this morning at 1 a.m., surrounded by her family. She leaves to mourn her sister, Lisa, her husband, Tom, and her two boys, Kurtis, 9, and Ryan, 7 and so many friends. Annette was part of our Trisomy 21 family - Ryan has Down syndrome.

She was a wonderful friend, wife, and mother. She will be dearly missed by so many.

Saturday, December 15, 2007

Please pray for Annette

Please pray for my beautiful friend, Annette. Pray that she is peaceful and pain free. Pray for her two young sons, Kurtis and Ryan, and her husband, Tom, as they struggle to say good-bye to her. Pray for strength for her family, and the knowledge that they are surrounded by love.

Wednesday, December 05, 2007

Paige's Hand

This is one of my very favorite pictures of Paige - it is the actual size of her hand just after her first birthday. She laid her hand on the scanner, and we took the picture that way...

I have always adored Paige's hands. My first knowledge of them was when she was in utero - when the technicians studied them so closely to see if they were clenched - a sign of Trisomy 18 - the diagnosis she was suspected of having before we got amnio results.

And the day she was born - her hands became the focus of the team of doctors awaiting her yet again, as we discovered she was born with an extra thumb on her right hand.

Just a few days later, I would cherish those hands of her, as there were so many tubes and wires everywhere on her tiny body that her hands were the only thing that I could really see or reach for. How I loved staring at those hands...

Through her first years, we spent quite a few nights in the hospital, where I would sleep next to her, and her tiny hand would reach for mine in the dark. From a very young age, I would only have to whisper to her, "do you want to hold hands" and that sweet hand would come my way...

And, indeed it is her hands that have taught me some really great lessons. Not only because of the things they have done, but the things they have struggled to do as well. She uses her hands to speak, and entertains herself often by watching her hands dance in the sunlight.

Its those lovely hands of hers that have kept me grounded on this journey. They remind me that God did not bless me with her in order for me to prove to the world that I could raise the smartest, most accomplished, most impressive child with T21 ever.

No, His intention was completely different.

He wanted me to know unconditional love for my child. To feel my heart fill with joy every day at the sheer sight of her. He wanted me to be a messenger of this joy; to share that joy with others.

He does not want my life to be measured by success in the usual way we measure success - by a career, or by finances, or accomplishments. Nor does He want me to judge the worthiness of her life in that way.

Instead, He sent her to me so that I could learn the real values of life - those of compassion, selflessness, and yes, sometimes humor.

Those lessons help me to be a better mother to both of my children; as I fight my own perfectionism and realize that they both are gifted in their own way, that they both will soar and they both will coast - that its a natural progression of our lives.

Paige uses those hands to express her love - when you sit with her, or lay beside her, she will ever so gently rub your face, touch your hair, and explore you in a way that only an innocent child can. She particularly loves to see if you have earrings on, and loves the feel of them as they rub against her hand.

Right now, she is using her hands to harass the dog, who is trying to feign sleep under the coffee table, in the furthest corner his 90-lb body will allow him to be. She commando crawls after him, and squeals in this high pitched way that only he can hear, lol

In the next couple of weeks, I will once again be whispering, "do you want to hold Mommy's hand" to her, as she wakes up from anesthesia, somewhat confused and looking for comfort.

And, with any luck at all, when I am old and my days are coming to an end, it will be her who whispers in my ear, "do you want to hold my hand?"

And then...then...I will remember once again that the celebration was the journey, not the destination. That however ordinary anyone else in the world might have judged us to be, we have been quite extraordinary, this team of her and I.