Is He Crawling Yet?

Well . . . he gets where he wants to go!  Can you call it “crawling?”  I’m not sure . . .

See for yourself!

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The original soundtrack I had was better . . . sorry.  Due to circimstances I can’t control, I had to change it!  If you want the original, I can email it to you. 🙂

Our Weekend

Before the weekend arrives, I wanted to share some of the fun we had this past weekend!  (I am running a little behind this week in a lot of ways . . . )

We had a wonderful visit from my family.  My parents, my sister, and my brother and his family all came to visit us in Yakima.  It was really nice to have our whole family together.  We had planned to get together and celebrate birthdays (Matthew and Dominic share a birthday) before Grandpa died, but we decided Grandpa would have wanted us to get together anyway.

And, boy did we celebrate!  We had not one, but two birthday parties (you know us . . . any excuse for ice cream!)  We celebrated Matthew’s and Dominic’s birthdays, and also Matthew’s Baptism Birthday.  (He was baptized on the feast of St. Matthew, Sept. 21st)  We had good, quality family time, and lots of fun playing with the kids.

We had 10 “extra” people here, but it really was fun!  Crazy at times, yes, but fun!   We even managed to can a batch of pears while everyone was here.  (Who me?  Tackle a big project at a crazy time?  Not me!) 🙂  Micah loved playing with all of his cousins, and has asked for them every day since they left.

Here is Aaron with all the cousins:  Left to Right: Marianne (4), Bernadette (8mo), Matthew (12mo), Micah (2) with Catherine (6) peeking over his head, Christopher (2), and Dominic (8).

We always get lots of comments about all the little blondies when we go to church together . . . gee, I wonder why?

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More good news today:

The Senate passed the Disability Diagnosis Bill.  This Bill, if it also passes in the House of Representatives, would help provide better up-to-date information and support for parents who receive a prenatal diagnosis of a disability.  It is supported by people on both sides of the abortion debate, but, as I understand it, is intended to provide information regarding support for families raising a child with a disability, and alternatives to abortion, including a registry for families willing to adopt these children if their birth parents do not feel they can raise them.

Click here for Patricia Baur’s full article, but here is an exerpt:

Sen. Brownback, who passionately opposes abortion, has portrayed the measure as an effort to save the lives of babies with Down syndrome. “To deny children with disabilities a chance at life will make us more insensitive, callous and jaded, and will take away from the diversity of American life,” he said in remarks on the Senate floor last week. “I don’t think this is what we were meant to do.”

I’m not sure how much impact this bill will have, but I’m encouraged by Sen. Brownback’s attitude, and encouraged that other senators agreed that it was worthwhile.  It’s definitely a step in the right direction.

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I’m working on “Chapter 4,” as well as a post regarding current political issues . . . but like I said, I’m running behind on everything this week!   Also, these are more difficult posts for me, and I keep running into my old nemesis: Perfectionism.  I need to constantly remind myself what the Flylady says:

“The stinking thinking that we just can’t do something because we don’t have time to do it the “right” way keeps our homes and lives in clutter and CHAOS.”

(click here for more Flylady) 

I really have enjoyed writing, which has surprised me.  It has been fun to share our story, and all of the responses we’ve gotten have been very encouraging.  I’m just having trouble finding time recently! 

So, if all of you will keep forgiving my imperfections, I will keep posting. I can do anything . . . 15 minutes at a time.  Thanks, Flylady!

In Loving Memory

My grandfather, Paul Widhalm, went Home today.

It’s hard to know what to say – how do you summarize a life . . .  a man . . . in a few words?

He was an incredible man.  An example of faith.  He prayed often, and he prayed loudly.  Whenever we were at the farm, we went to sleep to the sound of Grandma and Grandpa saying their evening prayers together.  He trusted God with everything, he believed in the power of prayer, and lived his life as an example of following Christ.

He was such an example of love.  His marriage to my grandma was everything I could hope my own marriage will be.  His devotion to her was unwavering.  They still celebrated the anniversary of their first date – close to 70 years later!  They were more in love than anyone I know, and embodied “the two becoming one.”  We always knew one would be so lost without the other.  The last day he was awake in the hospital, he held my grandma’s hand the entire day.  That is what I want my marriage to look like 60 years from now!

And, he was so generous.  He once told me about a time he gave $1 to a man on the street who said he “needed a drink.”  He told me, “God didn’t say tuh judge ‘im, He just said, ‘Give!'”  I think of that often.  God just said, “Give!”  And, Grandpa gave.  A lot.

Even though he had over 40 grandchildren, he had a way of always making me feel special.  He called me his “buddy,” and he was mine.  We would both cry out “Buddy!” as I ran to him to get my big, tight, long bear-hug.  You never had to wonder if he loved you.

He loved babies – the littler, the better.  So, we took Micah out as soon as we could (4 months old), and Matthew out to visit when he was only 2 months old.  Both times, Grandpa held the baby the entire time.  But, this time when we went to visit, Grandpa was only able to hold Matthew for feedings, but seemed to really enjoy the time snuggling him:

Summer of 2005 – I was pregnant with Micah:

Grandpa playing with Micah (4 months old):

He was a very, very special grandfather, and I am blessed to have him as an example of faith, love, and generosity.  He was able to live his entire life on the farm, which is what he wanted.  He would not have done well in a nursing home or assisted living – the farm was his home.  His last week was in the hospital, where we found out his lung cancer had spread to his spine.  He was comfortable and surrounded by family when he peacefully closed his eyes and passed away.  We have no doubt he is in the Father’s arms right now.

Please pray for my grandmother, Evonne.  Also, for their 8 children and their families.

Birthday Party pictures

We had such a wonderful evening celebrating Matthew’s birthday.  The weather was beautiful, and our backyard was full of our close friends and family.  If we counted correctly, we had 40 people here helping us celebrate (21 adults, 7 “big kids,” and 12 three-and-under!)  All the kids had fun playing on the lawn, and we really enjoyed visiting with everyone.  Both the boys took great naps that day, so they were in good spirits and had a great time with all the excitement.  Matthew did everything he was supposed to do with his chocolate cupcake, as you can see from the pictures!

Thank you to everyone for coming out and helping us celebrate!  Thank you, especially to all who helped the evening go as smoothly as it did.  We really had a great time, and we love you all!

I’m trying the “gallery” mode for sharing pictures – hopefully you will be able to click on the thumbnails at the bottom of the page to see the full images.

Here they are!  Pictures from Matthew’s birthday party:

Happy 1st Birthday, Matthew.

Skipping ahead a few chapters . . . .

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“If he makes it though this week, he might live 3 months . . . possibly 6 . . . but he definitely will not see his first birthday.”

Dr. Anderson’s eyes were gentle and sad as he discussed Matthew’s prognosis with us.  Aaron and I both swallowed hard and managed to nod through our tears as we held our little Matthew, too weak to cry and too weak to eat.  At only 4lbs, 11oz and a tiny 12 inches long, the blanket almost felt empty.

Earlier I had asked one of the other doctors how we would feed him at home since he wouldn’t take a bottle and wouldn’t latch on to nurse.  He said, “Sometimes with babies like this we don’t.  We find that they drift off into a comfortable sleep and then pass away within the week.”  I was shocked at his suggestion.  I simply could not bear the thought of Matthew suffering starvation and dehydration, and insisted that we place an nasogastric (NG) tube to give him nourishment.  After only 2 small feeding via the NG tube, he was able to take milk from a bottle and the tube was removed.  “See?” I thought to myself, “He just needed a little help getting started.”

We brought our tiny, frail new baby home.  We couldn’t wait to get him away from the bright lights and loud beeps of the NICU.  We would love him and keep him as comfortable as possible for as long as we had him.  Even though we were glad to be leaving the hospital, we were more than a little nervous as we left, armed with a supply of NG tubes, morphine to give him when he started having respiratory distress from his heart failure, and a myriad of other various medical supplies and instructions.

We never imagined we would be here today celebrating his first birthday.

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Matthew,

You are incredible.

Your daddy and I are so proud of you, and all that you have done this past year.  You have been through more in one short year than some people go through in a lifetime.  You are a tough little guy – stronger than anyone I know.

I love sharing your story.  You are an inspiration to many, and bring hope where there is none.  You have touched more people than you or I will ever know.

You light up a room with your smile.  Even strangers, who know nothing about you, are drawn to you.  Everyone notices what a beautiful baby you are, and comments on your incredibly deep blue eyes and your wild-man blonde hair – but it’s more than that.  People can tell there is something very special about you.

And, there is something very special about you – more than just your miraculous physical healing and incredible developmental strides.  It’s something that is difficult to describe . . . until someone holds you.  Then they “get it.”  It’s something about your sweetness, your innocence, and the affection you show people.  It’s the light in your eyes.  It’s your pure joy and your sense of humor.  I love hearing you laugh, and no one makes you laugh the way Micah can.  Between you and your brother, I laugh more now than ever have!

I love how little you still are.  I love that you’ve been small and cuddly for so long.  I love all the “baby stuff.”  But, I also love celebrating each milestone with you.  I love seeing you take pride in your accomplishments and clap your hands “hurray!” when you’ve done a good job.  I love that you are just as proud of Micah’s accomplishements as you are of yourself.  (Today, you gave Micah a huge smile and an unprompted “hurray!” when he did a summer-sault.  Then, again later when he burped.)

You have brought such joy into our lives.  I love you so very, very much, and I really am blessed to be your Mommy.  I wouldn’t change you for the world.  But, you have already changed us for the better, and I know that you will continue to do so for a long time.

Today we celebrate you.  All that you are, all that you’ve been through already, and all that you will become.  You are our Matthew – our “Gift from God,” and we are thankful beyond words for the gift that you are.

Chapter 3: What’s in a Name?

Continuing to tell the “whole story,” here is Chapter 3:

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I barely remember the summer of 2007.  I know that we spent June and July in a kind of fog, mourning the loss of our baby.  We literally grieved him as if he were dead.  It is difficult to describe the overwhelming sense of loss combined with the surreal feeling of the baby still kicking and moving inside my growing tummy.

We were so overwhelmed by the love and support of our friends and family during that time.  Everyone we knew, and many others that we’d never met, were praying for us and for our tiny baby.  I truly felt physically and emotionally supported.  The feeling was as real if a strong man’s hands were holding me up at and at the same time holding me against a comforting shoulder –  and without that, I never would have been able to get out of bed every day and take care of myself and Micah.  I don’t know how Aaron kept going to work each day, except that those strong hands were supporting him, too.

“We need to name him,” I said to Aaron just a couple days after we found out “he” was dying.  “I want him to have a name before he dies.”  I wanted a name to remember him by – a name to give to our little soul that would be waiting in heaven for us.  And, I wanted to tell everyone his name – so that they would know him and have a specific name to pray for.

Previous discussions of names had been difficult – Aaron and I generally had a tough time finding one we could agree on.  Usual discussions went something like this:

“How about Gabriel?  I really like the name Gabriel.” I would start.

“No, my grandparents had a dog named Gabe.  What about Alex?”

“Hmm, I kind of like Alexander.”

“Not Alexander!  Just Alex.  But NOT Alexander!”

“Oh.  I would want it to be the whole name.  Michael?” I would suggest.

“Too common.  Besides, didn’t YOU have a dog named Mike?”

“Yeah.  He was a good dog, though.  Not smart, but very cuddly.”

“Um. . . we do already have a boy named Micah.  Micah and Michael could get confusing.

“Oh yeah. It’s a great name, though.  I do really like those ‘M’ names. Sorry – my brain sometimes does weird things when I’m pregnant.”

“Which is why you should let ME name the baby!”

“Nice try, mister.  I’m not having a Darth Vawter.”

This would generally go on until we were both out of options, then we would campaign for our favorites despite the other’s objections.

But this time was very, very different.

“Do you have an idea of what you’d like to name him?” Aaron asked.

“I think maybe he’s my Matthew.”

“O.k.  He’s our Matthew.  . . . Hi there, little Matthew,” Aaron said, gazing at my tummy.  “Sorry about all of this, little guy.  You don’t deserve any of it.”

We had discussed the name Matthew in the past, many times.  You see, it was one of my favorite names.  I love St. Matthew, I love the way it sounds, and I love that it means “Gift from God.”  But, it wasn’t one of Aaron’s favorite names.  He didn’t mind it – he thought it was a good name, but he wasn’t a big fan of the nick-name “Matt,” mainly because it is a pretty common name.  We did know a lot of people named Matt – but they were all really great people!  We also weren’t sure we wanted to start the “M” trend with our children.  But, none of those things were going to matter with this baby.  He would be our Matthew, and he would be in heaven.

Most people think that Matthew’s middle name, Nicholas, is for Saint Nicholas – the patron saint of children.  (Think Jolly ol’ St. Nick).  And, it is . . . in part.  But, Matthew’s middle name is primarily for the lesser-known Saint Nicholas of Tolentino (click here), who is the patron saint of babies and dying people. (It just seemed to fit at the time.)  What caught my attention about Saint Nicholas, though, was his reputation for being a “wonder-worker.”  He spent his life caring for the sick and dying, and was known for many miraculous healings, especially of children.  He is even reported to have resurrected many children who had died!  I knew Matthew needed a miracle, so having St. Nicholas on board would help.

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How we felt during all of this is the most difficult part of our our journey for me to describe.  Maybe it is because I think I need to tell you why we felt a certain way – but I don’t always know why.  This is one of those times.  After a couple weeks, we had a great peace about the whole thing.  Yes, we grieved, but we were at peace with the situation.  We knew that our baby would go straight into God’s hands.  We were grateful that the diagnosis was so clear – we were thankful that we wouldn’t have to make any “tough calls” medially.  It was very clear – he had no chance of survival, so we would choose comfort care only.  If I didn’t miscarry him, we would be able to have him in Yakima, close to friends and family, because we wouldn’t be needing extensive medical care.  The doctors in Yakima could keep him comfortable.  And we would be o.k. – we had those strong hands holding us up, and we were at peace.

I didn’t know where we would bury him, though.  That was going to be tough.

Matthew’s evaluation today

Matthew had an evaluation at Children’s Village today to see if he would benefit from any of their services.  They offer speech, physical, and occupational therapy, along with all kinds of great services for kids with special needs.  The therapists were wonderful, and evaluated Matthew on everything from motor skills, cognitive abilities, and social skills to his ablility to eat and chew food.

. . . and he did great!

They scored his abilities like most standardized tests.  Matthew was compared to thousands of “normal” (read: healthy kids with no chromosomal abnormalities) 12-month-olds.  Anything within one standard deviation of the 50th percentile is considered “normal.”

Matthew scored “Normal” or “Above normal” in EVERY CATEGORY except motor skills.  His cognitive abilities, problem solving, social interactions  . . . everything except motor skills . . . were “Normal” – meaning right on-track with kids who don’t have Down syndrome or heart problems!

The therapists were very impressed with our little Matthew – with how well he is doing and how far he has come in such a short time.  They complimented his progress since surgery, and his ability to learn quickly.  We knew he was doing well, but it’s nice to have “doing well” qualified and confirmed by the experts.  And, I’m not sure we realized he was doing that well!

Matthew, your Mommy and Daddy are so proud of you!

We will start some physical therapy sessions every-other-week to help work on his motor skills.  The therapists said that some of his delay is due to the fact that he is just a tiny little guy – his hands are still just too small to do some of the things they look for, and he’ll need to build some muscle-mass . . . but I’m looking forward to learning how to better help him with these things.

And, yes – we’re still talking about the same baby – the one that was given a 0% chance of survival!