Worth Watching

In regards to my last post, I wanted to say that is really is quite rare that we hear any negative or limiting comment toward Matthew. If we do, it is usually from someone who doesn’t know us well. The vast majority of our friends and family have been nothing but supportive and encouraging – believing in Matthew from the very beginning. Thank you again! We really need and appreciate that so much. It has been your love and prayers that have carried us through this past year. Please keep believing in him, and encouraging us to do the same. I know there will be some rough times ahead, but I know he’s going to amaze us all!

He continues to do very, very well. His activity level and development have progressed so rapidly these past weeks, I can hardly keep up with him! He loves to eat solid foods, and he gobbles down 2-3 containers of baby food each day, along with some teething biscuits and arrowroot cookies. (I can’t remember Micah ever finishing a container of baby food, but Matthew will finish it off in one sitting!) What he really wants, though, is whatever we are eating! Tonight at dinner I was eating some peaches, and I couldn’t mash them fast enough for Matthew – I think he ate 2 or 3 slices!

He rolls all over the place, and is starting to figure out how to get where he wants to go. His big brother is starting to notice that Matthew is getting into his toys, and I heard more than once today, “I NOT share wif Maffew!” Matthew loves to use his legs, and will stand up for several minutes if he has hands to hold onto. His favorite activity, though, is bouncing. He can find a way to bounce no matter how you hold him, and he grins his biggest when he is “standing” and bouncing on his own.

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I was feeding Matthew late one evening, looking for some entertainment to help keep me awake, when I ran across an episode of “Extreme Makeover Home Edition” that literally moved me to tears.

Those of you who are familiar with the show know that the team builds a house for a deserving family each week. They literally build an entire house in a week – and not just any house, of course – an “Extreme” house!

The family they chose for this particular episode – the Hughes family – is amazing. Their son, Patrick Henry, is an incredible young man. He is a “disabled” person who puts all of us “abled” people to shame! He was born without eyes, without the ability to straighten his arms or his legs, along with other disabilities. His parents are incredible, and their love and dedication to Patrick Henry is remarkable. Patrick’s attitude and love of life is touching, but the way he turns disabilities into abilities is really amazing. He plays piano very well, which is no small accomplishment for a blind kid who can’t extend his arms. He also plays in the marching band at school.

You can tell this kid really touched the design team. They were especially touched by Patrick Henry and his family, as was I! One team member says, “A lot of times you focus on someone’s disability, but I think this week is really focused on their ability. You may think that a person can’t do something . . .maybe they can’t see, or they can’t walk, but you forget that maybe they can do someting you can’t even do! Patrick Henry has a talent not only muscally, but he has a talent spiritually, in that he can feel life.”

The connection he has with other people is what really gets you, though. One of the design team members remarks, through tears, “For someone who can’t straighten his arms, he has reached out to so many people!”

Anyway, if you have the time, that particular episode is worth watching. It is available online here. Just click on “The Hughes Family”.

Miracles and Expectations

There are 2 things I’ve been meaning to write about, but I’ve been waiting until I had time to do it “right.” The Flylady would tell me I’m letting my perfectionism get in the way of accomplishing anything . . . so I’m putting some thoughts down even though I don’t have time to think through everything and write as carefully and thoroughly as I’d like to . . . .

With Matthew, the miracles just keep coming! And even though I am still amazed by them, and so very thankful, I can’t say they surprise me anymore. Matthew just attracts miracles. Let me fill you in on the latest:

A couple weeks ago, the boys and I were out for a walk on our usual route. A couple with their dog was walking the other direction, waved to us and said the usual polite “hi,” then warned us about a large bee hive in a tree right in front of us (It was HUGE!), advising us to either move to the other side of the street or turn around. We were only 2 blocks from our usual turn-around anyway (and I am VERY scared of bees!), so we just turned around. So, now this couple and I were walking the same direction at about the same pace, and Micah kept turning around saying, “Mommy, there’s a puppy dog! They have a dog!”

So, the nice couple came closer and let Micah see the dog. We ended up talking more than one usually talks to strangers they meet on a walk, and the couple was asking me how long we’d lived in Yakima, what our respective occupations were, etc. When I mentioned that Aaron was a doctor, they said, “Oh, I bet all that medical knowledge has come in handy with having kids!” (How did they know??) I said, “Oh yes. Especially with our youngest,” and I mentioned that he recently had heart surgery, and shared a little bit about his original prognosis and the miracle he is. We’ve always felt that Matthew’s story is meant to be shared, and we haven’t held back with anyone who seems genuinely interested. I didn’t mention anything about his Down Syndrome, though. The woman peeked in the stroller to see the “miracle baby,” and said with absolute delight, “He has Down Syndrome!” (She used the same tone that Micah used to say, “They have a puppy!”)

I’ve learned that the only people that say it like that are people who have one. She said, “Ours is 26. He’s home with his caregiver right now.” I said, “We should talk,” and they ended up walking me almost all the way home. We exchanged phone numbers, and I gave them the blog address. At the end of the walk, the woman said, “We know a family you need to meet. They have a 3-year old son and a 9-month old son with Down’s.” I gave them permission to pass along my phone number, and really hoped they would. We were anxious to meet another family so similar to ours, and we are at a point where we really needed someone to share experiences, hopes, helpful hints, and struggles with someone who really understood. We have also been worried about Matthew not knowing anyone like him – having any friends who would understand him. With appx. 92% of women choosing abortion when they learn the baby they carry has Down’s, we are honestly worried that there won’t be a lot of kids like Matthew around.

I will use initials since I don’t have permission to use names, but L. called the very next day. She said she read the blog, and our baby boys are only 2 weeks apart. She said that they, too, had been praying to meet a young family with a Down’s baby, and that the previous night she had been reading her Bible and praying with the verses from Matthew . . . the same ones that I had posted on the blog. We talked for a long time, and met the next day for a play date with just the moms and boys. Then we met the next week for dinner so the Dads could meet, too.

L. was gracious enough to share what she’s learned from her research and reading, and has loaned me wonderful books to read. They are a further ahead on their journey of raising their little boy, who was blessed to have no major medical problems or hospitalizations. We are just beginning to read, research, and learn what we need to learn in order to raise Matthew, because for 6 months we thought he was dying, and then the next 2 months were taken up by surgeries and recovery . . . so L. is a wonderful resource for me in this area. She has also learned a lot of the ins and outs of the different therapies and early intervention programs. I could go on and on, but I think we will have a lot more to share with this family in the future.

This brings me to topic #2.

L. and I talked about our expectations for our little ones, and how frustrating it is when others put limits on our children – only expecting a certain level of achievement or assuming that certain accomplishments are simply out of reach for our little guys who happen to have an extra chromosome. We both get frustrated when we hear, “Oh, well he’ll never . . . .” or “Matthew won’t be able to . . . ” Just give them a chance! It is unfair to put those kinds of limits on any baby, even one with Down’s. Besides, if Matthew can grow an aorta and a left ventricle, fix his kidneys and club feet on his own, then patch his own VSD . . . who are we to put any limits on the kid? I will write a lot more on this someday, but for now just let me share what L. shared with me. A book called “Gifts,” edited by Kathyryn Lynard Soper. A collection of 63 “Reflections on How Children with Down Syndrome Enrich Their Lives.” It is exactly what I needed, and I haven’t been able to read more than 3 or 4 pages at a time without crying. I find myself saying, “That’s exactly how I feel!” with almost every story.

From page 28, Bryan’s story:

“Doctors deal with facts, but children are much more than a collection of facts. They defy expectations; they do their own thing. We must never limit them based on some set of statistics, or define them based on a diagnosis. The same goes for mothers. The same goes for everyone.”

It’s so reassuring to hear stories from other moms who felt the same things I’ve been feeling, and who’ve dealt with similar frustrations and challenges, but who also see the incredible beauty in their child and share the blessings their child has brought into their lives.

Thank you, Lord, for more miracles.

First Haircut

Matthew’s beautiful hair was getting so long that it was actually getting in his eyes!  It would also get tangled, and was starting to cover his ears . . . so he had his first haircut today!

Before:

After:

Here is what I saved in an envelope for his baby book.  🙂

More Smiles

My sister, Shannon, and her husband Jim came to Walla Walla, so the boys and I are here for a few days to visit with them. Unfortunately, Aaron had to work, so he wasn’t able to come with us. My brother, Ken, and his family came to visit, too, so we have a full house and are having a lot of fun. Micah just loves playing with all his cousins, and it’s a lot of fun to have all of our siblings and families together.

Matthew continues to do very well, and just keeps getting more active!

Matthew (9mo) with his cousin, Bernadette (6mo):

Micah and cousin Dominic (7 1/2) helped bake cookies. A very fun, but very messy project! Note the pile of flour under Micah.

My little baker’s feet:

4 weeks after surgery

Matthew had his 4-week post-op doctor’s appointment today.  Everything regarding the surgery looks great, and he is up to 14lbs, 5oz!

One of the main things we talked about was his feeding and nutrition goals.  Our pediatrician said that the latest research is saying that these little ones who are force-fed high calorie formula are very prone to obesity later.  She said that a feeding goal for a normal baby his size on normal formula would be 24 oz/day, but since Matthew is on high-calorie formula, he would be o.k. if he only got 20 oz/day.

When the nutritionists calculated his goal, they calculated his minimum requirements, then added some more calories for recovering from surgery, more calories because his heart was still working a little extra, and a bunch more calories to try to have him “catch up” on the growth charts.  But, he is now pretty well recovered, and his heart is working quite well.  And, he is proportionally sized (height and weight), even though he’s still a little guy.

So, this means that we can stop stressing about how much he eats, stop pushing food on him when he doesn’t want it, and (best of all!) stop waking him up at night to feed him!  It also means that we are free to give him more and more solid foods (which he loves).  We’ll just continue to monitor his weight.  As long as he is gradually gaining weight, we won’t have to worry about it.

This makes so much sense to me, and is really what I was feeling was the right thing to do, anyway.  It’s always hard when your gut feeling contradicts what the experts have told you, though.  When I mentioned this to our doctor, she said, “Amy, how many times have the doctors and ‘experts’ been wrong about Matthew?  But, you’ve always known the right thing to do.”

So, now we can relax a bit, and get some sleep.  (At least, the kids and I will get some sleep – Aaron is on his OB rotation this month and won’t be sleeping very much.)

Matthew . . . (Chapter 6)

The Gospel reading for Mass on Sunday was from Matthew, Chapter 7. Our priest wanted to remind us what came just before this, in Ch. 6. So, even though these weren’t the assigned readings for the day, we heard:

“Therefore, I tell you, do not worry about your life, what you will eat or drink, or about your body, what you will wear. Is not life more than food and the body more than clothing? Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly Father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span? Why are you anxious about clothes? Learn from the way the wild flowers grow. They do not work or spin. But I tell you that not even Solomon in all his splendor was clothed like one of them. If God so clothes the grass of the field, which grows today and is thrown into the oven tomorrow, will he not much more provide for you, O you of little faith? So do not worry and say, ‘What are we to eat?’ or ‘What are we to drink?’ or ‘What are we to wear?’ All these things the pagans seek. Your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be given you besides. Do not worry about tomorrow; tomorrow will take care of itself.  Sufficient for a day is its own evil.”“

Matthew 6:25-34

Not only was this read in church on Sunday, but these verses were also mentioned in the book I was reading Sunday night, Angel Unaware by Dale Evans Rogers. Today,our friend Jen, in her comments on the last post, also reminded us of these wonderful words from the Gospel that shares a name with our son.

Yes, Lord, I’m getting Your message. I’m slow, but I’m getting it.

On the same page in my Bible is a promise which we have held very dear:

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened. Which one of you would hand his son a stone when he asks for a loaf of bread, or a snake when he asks for a fish? If you, then, who are wicked, know how to give good gifts to your children, how much more will your heavenly Father give good things to those who ask him.

Matthew 7:7-11

If our Matthew has taught us anything, it is that God answers prayers! Not always according to our own will, but according to His. Looking back, I thank God for NOT answering some of my prayers according to my own will this past year, and I praise and thank Him for answering them according to His will. The answer – our little Matthew – was better than anything we thought was possible.

Cleaning House

This past week, we got rid of all of Matthew’s special medical equipment. The oxygen tanks and the special feeding pump with its IV pole are gone! The extra NG tubes and feeding bags are boxed up and in the basement, since the medical company couldn’t take them back. (If anyone needs them. . . . let me know!)

On one hand, I’m thrilled to have all that stuff gone! It’s great to have the extra room, to not have all that stuff in the way . . . to have Matthew doing well enough to not need it!

At the same time, it makes me a little nervous. Our “safety net” seems further away now. It’s hard to believe that Matthew is really done with all of that. If we needed any of the equipment, we could get it back, of course, but it’s not as easy. And, Matthew’s eating has been very borderline. We work like crazy to get enough calories in him. Aaron said today, “I bet we spend 7 hours a day trying to feed Matthew!” I haven’t timed it, but I wouldn’t doubt it. His “goal” is 30 oz/day, and for awhile he was getting 27-29. But, lately he’s fallen to 24-26 ounces a day. (He is starting to eat solid foods, though, so we’re trying to estimate how many calories of the Gerber sweet potatoes actually made it to his stomach, and how many are smeared on his face and clothes!) We desperately want to keep him tube-free, but at the same time, we want him to get the nutrition he needs. Aaron also said, “Matthew, I think I’ve spent your whole life worrying about you!”

But, Matthew looks great, he’s still pudgy and not showing any signs of weight loss or dehydration. He’s getting more active, and more alert every day. I’m really having trouble keeping him off his belly for his “sternal precautions,” because he is so good at rolling around now! Yesterday, I set him down on his back for just a minute while I took Micah to the potty. When I came back, he had rolled over twice in the direction of Micah’s toy truck, and was lying on his back playing with the truck! It was the first time he had rolled with a purpose of getting something he wanted!

When I look at Matthew, I know he’s doing well, but when I look at our feeding chart, I start to worry. And, the numbers really do worry Aaron, too.

Heavenly Father, We can’t thank you enough for Matthew – for the true miracle that he is, and for how he has already touched our lives and so many others, too. We are so grateful for our sweet boy. Thank you for letting me be his mother. Please forgive us when we worry and forget to trust in You. Through everything, You have been in charge, and Matthew has undoubtedly been in Your hands. We know that You will take care of him, that You have been taking care of him, and that you will never abandon him. Help us to keep trusting You in everything, Lord. Take our worry and our fear, and help us to focus on Your incredible Ways, and Your beautiful baby boy asleep in his crib. Amen.