Sunday, 23 February 2014

Update on Albert, Day 5

First, some excellent news. In the wee hours of this morning Albert was moved from ICU (Intensive Care Unit) into the High Dependency ward. Once again, he has surpassed the doctor's expectations. We were

delighted to visit him there this morning after Mass and check out his new surroundings. His pulmonary hypertension has abated (although this may be the temporary result of his platelet transfusion a day or so ago) and his breathing has further improved. His oxygen intake has been reduced to 0.1 litres, (the lowest measurement possible without removing the tube altogether!) but he has not coped well enough over the past 12 hours to remove the oxygen completely. He is still taking full feeds, though mostly through a tube directly into his stomach, but has been managing approximately 20ml every 4 hours through a bottle. He is still far too weak, and out of practice, to feed normally. Once he is able to breathe without assistance, Albert is likely to be transferred to a regular children's ward, perhaps even in our local hospital, until he learns how to feed orally.

So much for the health update.

One of the many tests results we have seen in the past day confirmed that Albert tested positive to Trisomy 21, commonly known as Down's Syndrome. Whatever this means to you, dear friends, I beg you to set aside your preconceptions for a few moments and consider what this means for us, the Holmes family. This is a surprise, but not a tragedy. This is a change of plans, not an end to plans. We are not afraid of what the future holds for Albert. It means a different life for Albert, and for us, but no less a full and joyful life. There are a number of health concerns common to Trisomy 21, but early intervention programmes and excellent health care mean that Albert can look forward to a long and joyful life where he will be the delight and joy of his family, and very likely bring us much more in the way of joy and peace than we can ever give him.

We asked ourselves if it would have made a difference if we were aware of Albert's condition well before he was born. We think it would have changed things, but not for the better. We would have been preparing for a label, not for a person. We would have been steeling ourselves to deal with set of symptoms, instead of joyfully holding baby Albert and asking what we can do to enable him to flourish in his own right. I am sure that many people do not like surprises, and would prefer to be prepared for different circumstances in advance, but we know ourselves well enough to know that this is the best way for us!

So what about you, dear friends? Where do you fit in to this story? We don't want pity. We want you to share our joy at the birth of this new and precious soul! We don't want commiserations. We want you to share our hope for his joyful and amazing future! Yes, some things will be harder, and I have to admit we have worried that we may not be good enough parents to nurture this new little bundle of awesome person-hood God has given us. We hope you will be patient with us as we navigate slightly different waters. We know that many of you will continue to support us as you always have. But we hope that you will see Albert first as just another of those crazy Holmes kids :), and that you also share in the joy of his struggles and his happiness.

As I drove home from the first meeting with the doctor, I was praying that God would help me grow strong enough to be the father Albert deserves, when I realised that I was thinking and praying as if care of Albert was a one way street. Albert is a young man with health problems, but no less a man. It may not be that Albert needs us so much as we need Albert. I am excited, eager even, to see what surprises God has in store for us in Albert.

6 comments:

chimakuni said...

Happy Sunday! Wonderful new real estate for wee Albert William. The little cot is sweet.

Yes, you are correct, the diagnosis of trisomy 21 is a bit of a shocker and it may explain some of his heart issues. I am so excited to see how Albert is going to rock the world.

Thank you for the update. I enjoy them and truly love the last photo of Albert on this post.

Sarah Duff said...

Would never think of offering commiserations. What a beautiful boy. God has given him the parents he needs. Praise God, and thank you for your post,

Marilyn Rodrigues said...

I was just wondering about Albert today, and was going to sms Susan with belated congratulations. So congratulations!! I think I would also prefer not to have known about the Trisomy 21. He is beautiful and looks very healthy! I can't wait to have a hold. I pray that he gets well enough to come home asap, God bless.

Nunes said...

This may be premature to say this but the old saying; "saved the best 'til last" comes to mind. Congratulations again. Such a treasure could not have been given to a more beautiful family.

Karen Hall said...

When I was pregnant with Caleb, the doctors were worried that he might have Downs Syndrome, so I went online and researched it, and I discovered that parents of Downs Syndrome kids describe their children as pure joy and love. We had three teenagers at the time, so that sounded good to us! So glad to hear that Albert is doing well!

Slippyroad said...

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. 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 the 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, filthy 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 must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your 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.