The "Other" Blog

Yes, there is another blog. It is a Resource Guide for parents of special needs children that I have been haphazardly working on for a while.

I recently made some updates and have been encouraged by some to post a link here on TDR in case regular readers are not aware of it.

Enjoy and I hope it is helpful!

Why Us?

A reader sent this one in. It's a nice follow up to this past post.

Why us indeed. Why should we be so lucky?

And to think I couldn't be bothered to practice my cello . . . .

HT: Neatorama

A Special Kind of Love . . .

I don't know if I mentioned it before but one of the things that struck me in (all politics aside) Sarah Palin's acceptance speech was when she said that children with special needs inspire a "special kind of love". I really do believe it.

Along with that special kind of love comes a special bond with other parents who have walked the same road. I would have to imagine it is sort of like two soldiers who have both seen combat meeting for the first time. They don't necessarily know each other but they understand each other on a level that no one who hasn't seen combat could ever possibly . . . .

Anytime I post about a dark day or difficult news, the response has been almost immediate and always powerful. There is an army of SB parents out there who possess . . . well, I was going to say "special kind of love" . . . but I don't think "special" quite does it . . . . I think "fierce" is more accurate . . . a fierce kind of love . . . not just in the way they love their extraordinary children but in the way they deal with the world as a whole . . . it is a sort of "dammit it all don't tell me what I can and can't do" sort of love . . .

Well, all that is to say, I thought I would share a couple of e-mails from fellow soldiers who wrote in response to my last Club Feet Update . . . . thank you so much for your prayers and support . . . out of respect for privacy, I will always sort of "anonomize" e-mails that I share . . but I hope you will agree that the e-mails I choose to share really are worth it . . .

This first one is actually in the comments section of the latest Club Feet Update (in case you missed it):

Hold that thought..... not all children wear splints all their life. Oh my gosh, I'm so glad [my daughter] doesn't! Her feet and legs were just aweful when she was small! Splints work to help keep feet straight, and to give support. You don't have to wear them all the time. As a matter of fact I can see AnnieLou playing in that summer pool, feet dangling, and no splints in sight! She might use them for support, but it will be up to you and her how much she needs and for how long. You'll travel down that road bit by bit. No need to think of splints for college, at least not until she gets out of her kindergarten splints! She is going to grow and change. Annabelle is not other children with SB, as you know. She is definitely on her own road. Take a deep breath and just think about the heel cord lengthening. You're not alone. Here's a hug! Keeping all of you in my prayers.

And here is an e-mail I received this morning (along with my response following):

Dearest Matt,

My heart aches for you. Its the smallest things, like casts, that will bring you to your knees. And what your feeling is painfully normal. You're so transparent when you write...I encourage you to continue that, it makes you stronger.

And yet, I know there are things that you feel, that you and Holly don't tell anyone. The dark nights have no words for description, then you go to the "at least" part of your brain... "at least she's here, doing relatively well, ... at least, at least..." Its a process, a journey.

But still, you'll have those moments of expectations that are dashed, hopeful anticipations and something out of the blue said by a therapist, the urologist, the neurosurgeon, whoever....takes those hopeful things away.

You can do this. I know sometimes you don't feel very strong but you are. The best advice anybody ever gave me when [my son] was born was to try to take it one day at a time. When my brain would go warp speed to him in middle school with kids picking on him, I would remember to stay in the day, trying not to project into his future.

Matt, there are no words to describe how much [my son] has changed my life. Yes, he has spina bifida, a shunt, the "list" but just like Annie, he's amazing. God has blessed these children with a unique, deep spirit of resiliency. You already see it in her. The way she looks at you and Holly. The piercing eyes she has, the soul connection you and she have as a father and daughter. Deep down you know this about you and her. It only gets stronger the older she becomes. I promise. And its joy indescribable.

So yes, be angry, process the grief, but it does get better. I hate how contrite that sounds, and I, honestly, didn't really believe it when parents with older kids would tell me that...but its true. Trust your faith, God keeps His hands on our children.

No need to reply, Just wanted to say I understand. Write if you want to talk, scream, bitch or celebrate. God is good...God soothes our pain.

... Mom of a miracle kid.

My response:

Thank you so much - I really apprecate that. And you are right - when I focus on the here and now, there is so much beauty and joy. It is the fear of the future unknowns that sort of get to you.

We have so many good friends with typical children but of course they couldn't possibly fully understand our thoughts and feelings.

It's one of those delicate balances, we want to be honest about what we are feeling without "feeding the best" so-to-speak and spiraling into some sort of self-absorbed abyss.

Sometimes you feel like you shouldn't hurt so much after a certain amount of time and yet you do . . .

I keep coming back to "My daughter". Of course I still hurt and ache from time to time - she's "my daughter" and it's part of parenthood for everyone - typical or extrordinary.

Then again, she's "my daughter" and she is dependant on me to show her how to face adversity, chin up and all that as well . . .

Holly and I so appreciate our "SB moms" who are further down the road and able to share some perspective with us.

When I decided to write about this whole process, I did it in part so that friends and family could stay up-to-date. But I also thought that maybe someone coming along the road behind us might take encouragement that they are not the first or only people to feel the way they do . . .

Who knows, maybe someone will read this weeks, months or years from now and realize that it is okay to stop for a moment and acknowledge "Wow, this still really hurts" and then keep on keepin' on . .

Thank you for your encouraging words. They mean more than you know.

Blessings,

m

Thank you once again to friends near and far, new and old, for all your support and encouragement. I really makes a difference . . .

You May Not Know Who Orson Bean Is . . .

Click on the link.

Then click on the next link. It's worth it . . .

I Had a Great Time

I stumbled across this amazing story yesterday.

Teaser below and Video after that. Be forewarned, the video does not pull any punches in terms of the reality of this little boy's situation or it's outcome.

Teaser:

The day I met Brenden Foster, I met an old soul in an 11 year old's body.

"I should be gone in a week or so," he said calmly.

When I asked him what he thought were the best things in life, Brenden said, "Just having one."

I didn't understand how this child, who was a year younger than my own son, could be so courageous facing death."

It happens. It's natural," Brenden told me.

Three years ago, doctors diagnosed Brenden with leukemia. The boy who once rushed through homework so he could play outside found himself confined to a bed. But there was no confining his spirit.

"I had a great time. And until my time comes, I'm going to keep having a great time," he said.

Brenden's selfless dying wish was to help the homeless."They're probably starving, so give'em a chance," he said, "food and water."

But Brenden was too ill to feed them on his own. So volunteers from Emerald City Lights Bike Ride passed out some 200 sandwiches to the homeless in Seattle.

Then Brenden's last wish took on a life of its own.

A TV station in Los Angeles held a food drive. School kids in Ohio collected cans. People in Pensacola, Florida gathered goods.And here in Western Washington, KOMO viewers from all over took part in the Stuff the Truck food drive in Brenden's honor. Hundreds with generous hearts donated six and a half huge truck loads of groceries and more than $60,000 in cash to benefit Northwest Harvest and Food Lifeline.

Brenden touched hearts all over the world. His wish came true, and he lived to see it.



HT: Neatorama

6 Year Old Girl "Speaks" for the First Time . . .

From Dailymail.co.uk:

Teaser:

Just a few days after setting up the equipment, Elke's parents, Glynnis and Matt Wisbey, described how their daughter started using her eyes to repeat the words 'I love you' over and over again.

Mrs. Wisbey, 43, who also has a son, Galahad, aged nine, said: 'I thought it was stuck and then I realised what she was saying.

'She was looking at the "I love you" icon and I couldn't believe it, she kept doing it.
'I said to Elke "are you telling Daddy you love him?" and she pointed at the icon "yes".
'It really choked me up, made me really emotional. I'm still emotional when I think about it.

HT: HT: Neatorama

Miracles

A friend sent this in the other day.

Birdies

This story was forwarded to me yesterday. It is called "When the Birdies Came" if you do not find it at this link, you may have to look for it in the archives here.

The Smell of Rain

From an e-mail I received this morning . . .

A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery.

Her husband, David, held her hand as they braced themselves for the latest news.

That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing.

At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.

Still, the doctor's soft words dropped like bombs.

'I don't think she's going to make it,' he said, as kindly as he could.

'There's only a 10-percent chance she will live through the night, and even then! , if by some slim chance she does make it, her future could be a very cruel one'

Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived.

She would never walk, she would never talk, she would! probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.

'No! No!' was all Diana could say.

She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four.

Now, within a matter of hours, that dream was slipping away

But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love.

All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.

There was never a moment when Dana suddenly grew stronger.

But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there.

At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time.

And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.

Five years later, when Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life.

She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing.

As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, 'Do you smell that?'

Smelling the air and detecting the approach of a thunderstorm, Diana replied, 'Yes, it smells like rain.'

Dana closed her eyes and again asked, 'Do you smell that?'

Once again, her mother replied, 'Yes, I think we're about to get wet. It smells like rain.'

Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced,

'No, it smells like Him.

It smells like God when you lay your head on His! chest.'

Tears blurred Diana's eyes as Dana happily hopped down to play with the other children.

Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along.

During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

Just Had to Share

From an e-mail we received this morning . . .

Hi Matt and Holly,

I am so elated to see that little Annabelle is doing well. I understand that the first few nights were pretty hectic. I don’t know if other parents have share that fact that this is very normal with newborns so hang in there, it should get better.

I was watching the Olympics tonight and Johnson&Johnson had a short ad about heavyweight Deontay Wilde. He is a boxer for in the Olympics. In this clip, he said that he had a daughter that was born with spina bifida and that if you could see her now, you would never know that she was born with spina bifida. So I immediately got on the internet and found some interesting pages.

On the Olympics bio, one of the paragraph goes:

A motivating force behind your jobs was your 3-year-old daughter, Naieya, who was born with spina bifida. How is she doing now?

Most kids with spina bifida are paralyzed from the waist down and a majority of them are in a wheelchair. But for her case I always tell people, "God has something for you to support you." And you can never tell that she has it. She has braces on her legs because she just had an operation on her legs but that's the only thing people ask me about. She's standing up well by herself and even taking multiple steps. I give her a couple more months and she'll have everything by herself. You look at my little girl now and you can never tell. She's the smartest little girl in the world, it's amazing. It makes me proud to say I'm a parent. She's the most beautiful thing in the world.

(read the two paragraphs after this on the website and if you look at the pictures on this web page, the 14th picture is his little girl.)

Other websites about him and his daughter

And Here

One of the paragraphs towards the bottom:

“But there are more important things to worry about now. His little girl, Naieya, is 2 and after many surgeries she can move around and play and do almost all the things the doctors said she never would. Deontay is not surprised. "I feel she's got a part of me," he said.”

Another Article Here

Shortly after she was born, she underwent a series of surgeries at Children’s Hospital in Birmingham for treatment of spina bifida, a congenital condition of the spinal cord.

She attends the University of Alabama RISE program for children with hearing, sight and motor skill impairments. Wilder said she has begun to walk and talk, despite the doctor’s early prognosis.

Some other stories about the man Here

Thank you!

It's a Boy . . . err, huh?

Hello all, this is Matt.

Both my girls are sleeping and under doctor's orders not to be disturbed so I figured this was a good time to head home briefly to get some house guests settled, grab a change of clothes and head back.

Some great photos can be found here - and thank you once again to Kristin (you may have to scroll down).

It has been a true roller coaster and the wife and I are just so happy - so happy when we heard that first little cry in the operating room. So happy to see her take a pacifier. So happy to hear that she most likely has the ability to eat. So happy that every single nurse that has attended her has remarked on how strong she IS.

Even now, as she recovers from two major surgeries in her first 48 hours of life, little Annie Lu is back at the hospital trying to open her eyes, trying to breathe on her own around the ventilator and moving her arms (I can only suspect in a desperate effort to back-hand whomever it was that was responsible for the past 48 hours . . .).

She is most definitely a fighter - and that is good (check back with me in 16 years . . .)

At one point today, the wife was asleep in her room and I was sitting on a bench outside the hospital lobby trying to get some fresh air and waiting for a friend coming from the airport. A car pulled up and two teenage gals got out - one of them carrying a 7-week-old puppy.

Turns out they had just picked up their new dawg today and wanted to bring it by the hospital to show their mom who is a nurse on duty. We started talking about my dawg and how I was missing him since I hadn't seen him in three days. The topic of our little baby came up and we chatted in generalities about her situation . . .

"Boy or a girl?" one of the teens asked.

"Boy" I replied . . . . and then the wheels slowly grinded into place . . . "Are you asking about my dawg or my baby?"

"The baby" the girl replied.

"Ohhhh . . . . a little girl . . ." I said, while mentally slapping my forehead . . . DOH!

My dear little Annabelle, I have terrible news . . . . your dad is a moron. Sorry. Not much I can do about it. What I lack in smarts I try to make up for in effort . . .

The miracles are stacking up around here and I BELIEVE it is because of all the prayers from the many people following our story.

THANK YOU THANK YOU THANK YOU for my little girl . . . We may not even have her were it not for your prayers.

Please keep praying for her recovery - for her neurological development - for her mental abilities - and for all the WONDERFUL people attending to her.

I could write pages and pages right now but I have to get back . . .

I will continue to lean on my good friend Sean, who has been blogging on our behalf through all this.

Keep praying.

AND GO ANNABELLE!

Annabelle

She is out of surgery and everything went well. The shunt has been placed in her little body, and should relieve the pressure on her brain. The doctors said the current shunt should be good until Annabelle reaches age five or six. Matt is just waiting outside the operating room to accompany Annabelle back to her bed in the ICU.

Annabelle will remain in the hospital until she begins eating off a bottle. Matt was guessing it may be a week or so before they can take her home.

We can all breathe a collective sigh of relief. Our little Annabelle has been through more than we can imagine in her first two days. She has shown herself to be the fighter and miracle that we all hoped for.

Matt and Holly have been through a great deal themselves these past few days and months. They will need our continued prayer and support in the days, months and years going forward. The dust has settled on the first battle and the Lindens have shown strength we all aspire to have. They will need all of us by their side as they recover and move forward.

Thank you for all the love and support you have already provided. Thank you in advance for any help you can provide to the new Linden family - logistically, spiritually, monetarily, etc. Thank you for checking in here and hitting refresh every 15 minutes hoping for more news about Annabelle. Thank you for being a part of Annabelle's circle.

Please continue to check in on the Linden family both here at The Dawg Run and at Annabelle's Circle. Details about giving to Annabelle's benevolent fund can be also be found at Annabelle's Circle. Again, thank you one and all on behalf of Matt, Holly and Annabelle. God Bless.

One tough cookie

Annabelle is out of surgery. Everything went well. The opening in her spine is closed up and she is totally stable. She is about to be wheeled back over to Mary Birch where friends and family can come visit her in the ICU. She is a miracle.

Her surgery to install the shunt is scheduled for 7:00 tomorrow morning. Matt will hopefully be passing along some more photos tonight.

Thank you all for your continued prayers and support.

Miracles

This was sent to me today. Words escape me . . .

Miracles

A friend e-mailed us this story this morning:

Sup guys,. . .

I just had an experience that will probably take me quite a while to digest, but now that it’s over and I’ve had the chance to chew on it a bit, my thoughts have wandered to you three. For some reason, I thought you might appreciate this:

I saw a guy stand up today.

[My wife and daughter] were dancing in the garage when I started to mow, so I fully expected to see them dancing when I came around to the front, but they weren’t. They were just standing there along with my neighbor Marge and her husband Ben.

Ben was standing in my garage.

He’s a bit of a staple in our neighborhood; you would see him out on his pseudo-constitutionals now and then. Most folks know who he and Marge are and help them out whenever they can. You see, Ben was diagnosed with ALS (Lou Gherig’s disease) in 1995. By 2005 he couldn’t move a muscle. He’s been confined to a wheel chair for over a decade and his doctors told him nearly a decade ago that his death was imminent.

And yet, when I walked around the side of my house, there was Ben, standing there in all of God’s glory.

It was simultaneously the most under and overwhelming thing I have ever experienced. Here was the most ordinary thing that could ever happen and it was a straight-up miracle. I have never stood face-to-face with a miracle before and, probably like most Christians, doubted those that I heard others profess to have witnessed or experienced.

He has a feeding tube, but he hasn’t used it in over six months.

The last time I talked to Ben I could only understand about half of what he said. His speech is still slow, but I had no trouble understanding anything he was saying.

His knees hurt a bit when he stands but that’s because his muscles have atrophied so that they don’t have the strength (yet!) to keep him up for too long.

He’s pretty sure that his mind is “re-writing its pathways.” He’s a Vietnam vet who is over sixty years old and his mind is being renewed – literally. . .

Ben loves the Lord and regularly attends my dad’s church. I don’t know why, seemingly, God acts in one instance and not in another, but for all that you have gone through in the last eight months, God is clearly up to something on your behalf. You have been in our prayers (hearing Grace ask to and pray for Annabelle has been such a blessing), and I can only hope that knowing that God is still moving in the lives of his children will help provide you a little solace.

Thank you!

Miracles

Dina pointed me to this video today - what an inspiration!

Miracles

I have read about "Team Hoyt" before and it is a truly inspirational story - I imagine you can Google them for info. They have become a fixture at the Boston Marathon each year.

A friend of mine sent me this e-mail this morning

This is worth reading and watching the video.

Make sure you have the volume on. Read and then watch the video.

A son asked his father, 'Dad, will you take part in a marathon with me?'

The father who, despite having a heart condition, says 'Yes'. They went on to complete the marathon together. Father and son went on to join other marathons, the father always saying 'Yes' to his son's request of going through the race together.

One day, the son asked his father,'Dad, let's join the Ironman together.' To which, his father said 'Yes'.

For those who don't know, Ironman is the toughest triathlon ever. The race encompasses three endurance events of a 2.4 mile (3.86 kilometer)ocean swim, followed by a 112 mile (180 .2 kilometer) bike ride, and ending with a 26.2 mile (42.195 kilometer) marathon along the coast of the Big Island.

Father and son went on to complete the race together.(The son works at B.U. in the technology department.)

PLEASE WATCH THE VIDEO IT PUTS A WHOLE NEW VIEW ON THIS STORY!! It isn't very long!!



It's what Dads do . . .

Miracles

From an e-mail I received yesterday:

Last summer I witnessed a true miracle.

I was asked by my neighbor, Zita, who is a piano teacher, to pray for one of her students, 10-year-old Felix Lilly, who had fallen from a 30-foot tree and was in a coma with traumatic brain injury.

I followed the family journal on CaringBridge.org and read that the neurologists had braced the family for the probabliity that Felix would remain in a chrinic vegetative state. We joined hands at church and prayed for a miracle.

That miracle manifested. A couple of months ago, I went to Felix' piano recital, and this little boy, who had to learn to walk, talk, use the bathroom etc. all over again, fairly ran up onto the stage and played Beethoven's Fur Elise with such passion I couldn't hold back the tears of joy and gratitude.

Prayers and Squares - The Backstory

First, a bit of a recap.

This is the first day we discovered something was wrong with Annabelle.

This is a dream the wife had one week later.

Which, in part, prompted a friend to do this one week after that.

So circles have become something of a symbol for us through all this.

This is our experience receiving a prayer quilt from the Point Loma Presbyterian Church prayer quilt ministry exactly one week after that.

Huh . . . that's strange . . . I never noticed that these four big events were all evenly spaced one week apart . . . anyway . . .

Here is a little more info on the prayer quilt story:

Our connection to the prayer quilt ministry was through our friend Wendy who attends a Nazarene church and goes to a community Bible study with Cheryl from Point Loma Presbyterian Church.

When Wendy shared our story as a prayer request, Cheryl asked if we would like a prayer quilt from her church - you know the rest of the story there.

What we didn't find out until afterwards was that over a year ago, Cheryl had a very clear vision of an unusual quilt design and felt prompted in her heart that she needed to make it. In part because of the unusual design, it took her a year to finish.

It is that quilt that Wendy picked first that day in the storage hallway and was shocked how perfect it was.

The following Sunday when Holly and I walked to the front of the church and saw the quilt for the first time, a knowing grin crossed my face and the wife's jaw dropped.

Yesterday, Wendy e-mailed us the following:

Today is my last regular bible study meeting. (Our bible study will of course ending with a potluck and sharing next week!)

The assistant teaching director called me yesterday because she is giving the lecture this morning on the final chapters of our study. She asked me for permission to share my experience with Cheryl and the prayer quilt as an illustration in the lecture today.

Cheryl had shared the story of what happened between her and me, and you guys and Annabelle at leader's council. The other leaders were deeply touched by seeing the hand of God working so directly and obviously in the lives and circumstances of his people. She wants to share it with the rest of the women at CBS. I am looking forward to this morning's bible study with great anticipation!!

I can't wait to see how God will once again move in the hearts and minds of his people (most of whom will never meet you) through the testimony of his hand upon your sweet Annabelle.

On a side note, the wife and I have been looking for a church to attend ever since moving back to San Diego 5 years ago. Nothing has been a good "fit" for us until we re-discovered Point Loma Presbyterian through this prayer-quilt experience. It looks like Annabelle has helped us pick our new home church. . .

Oh, the quilt that Cheryl envisioned over a year ago? This is it (scroll down):

























Circles and flowers (click to enlarge).

When was the last time you saw a quilt made up of circles? Lime green and pink to boot (two of my wife's favorite colors).

Its like living in one of those Highlights children's magazines - the one that had the drawing with all the hidden pictures in it.

How many miracles can you find . . . . .?