Tuesday, May 31, 2011

Rare

My dad made the media again. For those who haven't heard, a few weeks ago my dad donated his kidney to a friend and fellow coach. Apparently, its quiet rare for someone to help a friend in this way. Here is a follow up article on how him and Bill are doing and a more in-depth story on how all this came to be.

http://www.freep.com/article/20110529/HSS/105290470/One-ex-Lahser-coach-donates-kidney-another

A few weeks have passed since Bill Hertle picked up the phone one Sunday and called John Tryon.



"I want to say happy Mother's Day to you," Hertle said.


Tryon was confused.


"What do you mean?" he asked.


"Well," Hertle said, "you're the mother of my kidney."


Mother of his what?






"Mr. Hertle
I feel sorry for you because you have 0 kidneys. I wish I could come to a football game. I hope you don't die. You are going to have 1 kidney and so is Mr. Tryon. You are very lucky."
-- Andrew, second-grader at Beechview Elementary in Farmington.






Hertle, 50, and Tryon, 53, were sitting near each other a couple of weeks ago, just as they had done for years when they were assistant coaches on Dan Loria's football staff at Bloomfield Hills Lahser.


This time, however, they were in Hertle's room at Henry Ford Hospital in Detroit.


Also present were Tryon's two kidneys, but now his left one had taken up residence in Hertle's body.


On the day before Hertle turned 50, Dr. Jason Denny harvested Tryon's left kidney and placed it inside Hertle, who had lost both kidneys to disease.


And it all happened because of high school football.


"It's very cool and they come off the background of teamwork being football coaches," said Denny, a former all-state quarterback at Holy Trinity High School in New York. "Me playing football myself, you understand that the contribution to the group is often greater what you can get for yourself."




Connected for life


"Dear Mr. Hertle,
You are very lucky to have a friend like Mr. Tryon."
Jason, second-grader at Beechview Elementary in Farmington.


Bill Hertle was hunting in northern Michigan 19 years ago when he suffered severe stomach pains. He learned he had the same gene that led his father to have polycystic kidney disease, which causes clusters of cysts to develop in the kidneys and leads to kidney failure.


It took Hertle's father's life at age 51.


"My internist told me the time line, how my dad went through the disease, will be the same in terms of when it would fail and all that stuff," Hertle said. "I kind of had an idea that at 50 my kidneys would fail, which came to pass."


Hertle's first kidney was removed in 2008 and weighed 10 pounds, about 40 times the weight of a normal kidney.


"I lost a baby," he said.

Dialysis began two years ago and was anything but a picnic.


"Let me put it this way," Hertle said. "The first time they hooked me up I told them to unhook me, I was getting up and leaving. It's a lifestyle change -- four hours squat in a chair with a fistula in my arm so I had to keep the one arm straight and I had a blood pressure cup on the other. It's uncomfortable and it's a four-hour run.


"I could live another 25 years on dialysis, but I wouldn't want to."


Three months later Hertle was placed on a transplant list and continued dialysis that took a terrible toll on every aspect of his life.


And then John Tryon came along with some amazing news.






From football to friends


Hertle, 50, and Tryon, 53, were hired as assistant football coaches at Bloomfield Hills Lahser in 2001 when Dan Loria was putting together his first staff. Loria quickly realized both were knowledgeable football guys, and he also got a sense that Tryon was cut from a different cloth.


"When John (Tryon) interviewed I was explaining the money thing to him," Loria said. "He said he didn't want any money. He said to give it to someone else. He would be a volunteer coach, but he wanted to be a full-time volunteer."


Neither Hertle nor Tryon, who both played football at Bloomfield Hills Andover, was a teacher. Hertle had a printing business and Tryon was a financial planner, and the two grew closer the longer they coached together.


"At Lahser, the varsity coaches also coach JV," Tryon said. "Bill was the defensive coordinator for the JV and I was the offensive coordinator. Bill was also the head coach JV coach and we really became good friends then."


Tryon left after the 2005 season to begin the football program at Southfield Christian and returned to Lahser for the 2007 season.


Hertle, who became Lahser's varsity defensive coordinator, did his best not to let his kidney problems affect his coaching, but it was not easy, especially in 2008 when the Knights advanced to the Division 3 semifinals.


"In our regional championship against (Warren) Fitzgerald he came up to me sweating," Loria said. "He said: 'Dan, I don't know if I can do this anymore.' I told him it was up to him, I didn't want to take anything away from him. But he did it. I'd look at him on the sidelines and he was just dying."


Coaching is not Hertle's profession, it is his passion. If there was anything that kept him going through the dialysis, it was coaching.


"I fell in love with coaching high school football," he said. "It changed everything I did. I went back to school to get a teaching certificate to teach and coach. I haven't gotten there yet, but I'm working on that end."


Tryon no longer coaches, but he is around Lahser so much it is difficult to know that he is not on the staff.


He watched as Hertle struggled with kidney failure as he waited for a match.


"Whoever's willing to be tested as a donor -- God bless them -- gets tested," Hertle said. "My wife was a match, but at the 11th hour they canceled her out because she had kidney stones and other issues that excluded her from being a donor."


And that is when Tryon stepped forward.


"I was originally planning on getting tested, but I heard Sue matched so I stopped and didn't follow through," he said. "When I found out that fell through I thought it through quickly and started going through the process. It takes a long time."


The process took a year. In the meantime, Tryon checked with his four children, who all gave him to go-ahead. He also mentioned he was getting tested to be a donor to his girlfriend, Claire -- before he married her one year ago today.


"I guess that's why I married him," said Claire, who teaches second grade in Farmington. "That's just the way he is. He told me he wasn't put on this earth for just himself, this was the right thing to do."


A life-altering experience


The May 10 transplant did more than simply make Hertle and Tryon better friends. It merged two families.


"Oh my God," said Sue Hertle, who works at Lahser. "He comes in here to see Dan and I just want to hug him. I didn't know Claire that well, but now we're a big family."


Tryon jokes that the process leading up to the donation was good for him because he now had a clean bill of health.


"I got a bunch of medical tests for free -- colonoscopy, straight cauterization awake!" he said, laughing. "They did all the things I was supposed to have done when I turned 50 but hadn't. I have no issues."


There was a question about an artery that appeared to be wrapped around his kidney and the operation was scratched for a short time, but then rescheduled.


"I called Bill and told him it was on again and Bill was not excited at all," Tryon said. "He was emotionally drained by that point."


By then Hertle had tired of the emotional roller coaster and considered scrapping the entire process.


"I had been pulled out once because of my wife and then they second time with John," he said, shaking his head. "I was rethinking the whole thing at that time. Once I realized that I'd get another 20 years of life I'd go through with it."


Tryon respectfully disputes Hertle's math.


"He's going to get more than that," he said. "He's not a normal kidney patient. Most kidney patients are really sick from other things. Bill's not sick from anything other than this genetic thing, so he should live a normal life."


Throughout the process of being evaluated as donor, Tryon was asked by every doctor he met with if he was being paid to donate the kidney.


Other people simply asked if he was nuts.


His answer to everyone was simple: "With what I believe, it was a no-brainer. I would have to say everything I believed in my life was a lie if I didn't go through with this once I found out that I could help Bill."


Tryon doesn't worry that he would be in a life-threatening situation if anything happened to his only remaining kidney.


"I believe God takes care of me," he said. "Because of that I can focus on other people. This is just the epitome of that belief system."


An unselfish act


While Tryon tries to downplay his donation, what he has done is not lost on Dr. Jason Denny.


"It's awesome," the surgeon said. "A lot of times the lay person doesn't understand the sacrifice they are making. It's easy for them; they're still healthy and can live the same life, possibly a better life because now people have a tendency to take even better care of themselves because now they have one kidney.


"But the guy who is receiving the kidney -- his life is lengthened, so he gets a longer life, so it's life-saving that way and life-extending, and he doesn't have to be hooked to a machine three days a week for four hours at a time and all the complications that came with that. So he's changed Mr. Hertle's life quite a bit. He can go back to doing all of the things he was doing before."


That is why Hertle struggles to find words to voice his appreciation to the person who gave him his life back, the guy he used to coach football with.


"I thought it was the greatest thing in the world," he said. "Words can't ... I told him before; I don't know how a person can thank somebody for what he's doing. I don't know."


Tryon knows Hertle doesn't have to say another word.


"It goes both ways," Tryon said. "It's a privilege to be able to do this for Bill."


But there was one interesting aspect the doctors discovered during the transplant.


"The good part of this is, one of my kidneys had a very small kidney stone in it," Tryon said with a smirk as he pointed to Hertle. "He's got it now."


The transplant also provided Loria with a teachable life lesson he will be able to pass along from one team to the next for years to come.


"I'm real big in the football program about looking outside yourself and being a giver," Loria said. "I tell the kids one thing we're guaranteed in life is the opportunity to make life-long relationships and then this one hits us right in the face."


Actually, it was more like a kidney punch.

Article by Mick McCabe of the Detroit Free Press, 5/29/11





Sunday, May 29, 2011

Magic Keys

My daughter is smitten with Stevie Wonder. At least she would be, if I ever played the actual song. Just a few hours old, I sat in my wheel chair, gazing at my baby girl through the isolate, singing "Isn't She Lovely". Last month, I started to notice she recognized the song. If she was crying, her face would calm and she would stare quietly at me through her tears. If she was playing, she would drop the toy and smile, her eyes never leaving my face. I often get the words wrong, and have no Idol-worthy voice, but its Fiona's favorite sound in the world.



I hold the magic key. I can make my baby happy with just the sound of my voice. A temporary distraction from a painful IV or foot positioning. A soother to get over-tired baby to sleep. And add a little dancing and twirling with the singing, and I can get my baby rolling with laughter. This is a vast improvement from my boys who since they have been able to talk have told me "NO SINGING!" 

I notice a big difference in my relationship with my boys and my relationship with my daughter. Since day one, I have pushed Gavin and Breiden to be independent for my own sake of survival. 8 months pregnant with the twins, I watched a mom walk into Moes holding her newborn baby and I was filled with envy.  Not because she had her baby and mine were still ripping by belly apart, but because she had one. I wasn't going to be able to walk into anywhere holding my babies, have them in a sling, to be able to bond with them that way. I am in love with my boys, they are my best friends under 3 feet. And the bonding eventually happened. I did get alone time with each, but it is not the same as what I get to experience with my daughter. With Fi, I can sit with her on my lap and read her a book. She loves this, playfully hitting the characters on the pages, snuggling her self back into my torso.With the boys, one or both would rip the book/pages out of my hands and I never could get past the second page. Then, when they were old enough to not destroy the book, they wanted to "read" it themselves. That of course consists of the two of them in their own beds, skimming through books, by themselves. "I do it, mommy" "I wanna read" even though the only letters they know are B and G. ( that's a whole nother post that I don't want to get into right now).

But I have found a secret weapon. A magic key. "Tell me a story, mom"


 Ahhh... no book to rip, or hold or fight over. The story is in my head, and they want to hear it. My story telling is worse then my singing. Give me a book and I can read it beautifully, with all the right inflections and a bundle of different voices. But a story off the top of my head?... That is filled with lots of ums and stutters and "Do you know what happened next?", because I don't know what happens next and I need that extra time to think of something quick. The stories have the power to stop unnecessary whining. A distraction from the dropped toy on the car ride or the begging to watch just "one more" show, or simply that needed good-night ritual . To them, my made up, no rhythm, awkward ending stories are much better then a TV show. I love my magic keys.

Friday, May 27, 2011

for Ellies Gift

If you are a regular reader of mine, you know this story. You have read it in bits and pieces through out my blog, you've seen these pictures. I wrote our whole journey, diagnosis to now, for Ellies Gift- a blogger who guest posts blogs to help expectant parents see that the better option is to keep your Down syndrome child. Anyone who knows me knows this has become a mission of mine. You know the story, some of it is copied and pasted word for word from previous posts, some of it is new. She hasn't posted this yet, but why let it sit in my to-be-posted box when its all ready to go? Go ahead and check out Ellies Gift, spread it around on FB. We are trying to lower that 9 out of 10 abortion rate. 




"Even imperfection itself may have its ideal or perfect state" Thomas de Quince

I know I was smiling as the doctor was speaking. My brain seemed to be on delay as the words came out of her mouth and I starred into the compassion in her eyes. "Something is not right with the baby's heart". (Subconsciously, I made note of the fact that she choose to say "the baby" and not "your daughter".) The smile didn't leave my face, although now it was there more from nervousness then joy.

My world stood still for two weeks. Floating threw each day with a hundred unknowns. Whats wrong with her heart? Whats wrong with her feet? Are there any other deformities? Is there an underlying disorder causing the deformities? Will she survive in utero? Will she survive her first year? For me, the unknown was scarier then the known. Give me an answer, any answer, so I can find a positive and hold on to it with everything I have.

Those questions got me asking myself a lot of other questions. Mainly, why me, why my baby? There was a war going on with my emotions between accepting everything and completely losing it.  I prayed for strength for my little girl.

The call finally came.

Down syndrome.

My baby girl has Down syndrome I said to my self, in my head, numerous times after that phone call. If I could have pulled her out of my stomach and held her, I would have. My thoughts were filled with conflicting feelings. Feelings that I don't want this road, but I want her. Hope that this was all a bad dream or a mistake. That we were the 1 in a million who's amnio results were wrong. This is not what I had wanted, but I wanted my daughter, that very baby inside me with an extra set of chromosomes. I wanted her so bad that the thought of her heart condition taking her away from me was unbearable. I was a lioness protecting her cub when doctors even started to go down that road of "other options". And those first few months of testing and monitoring, I had to go on the defense a lot. It was not only initially assumed that I would abort, but encouraged. Most of the doctors referred to my daughter in disconnected terms to me such as "the baby" "it" and sometimes a little bit more acknowledging as "she". "She" was my baby, my daughter, my little girl. Their choice of words did not go overlooked on how they felt about the situation. Neither did the comforting words of the few doctors who still tried to treat my pregnancy as something special. Who called my daughter by the name we had chosen to give her and cared just as much about my baby as any other normal baby.

Her Down syndrome diagnosis was painful. I had to mourn the death of the baby I thought was in my belly and reacquaint myself with the differences and challenges the extra chromosome brought. I set out to educate my ignorance in what Down syndrome is, what my daughter would be like, and what kind of potential I could expect.

More alike then Different. A mantra in the Down syndrome community. And that's exactly what I learned and have found to be true as my daughter nears ten months. The more I researched, the more I found that my baby was going to be... a baby. She was going to need to be feed and changed and loved. She was going to learned how to roll and crawl and eventually walk, just maybe not as fast as her twin brothers did. She will go to school-elementary, middle, high school and possibly even college. I found that her potential was very near the same as the baby I had originally imagined I was having- a 46 chromosome baby. My  47 chromosome baby was just going to need some extra teaching and a whole lot of love- I could do that.

The heart condition was classified as a text-book Transposition of the Great Arteries, Complete AV canal, and only one valve. Two months later that text-book TGA "disappeared". Doctors called it a fluke, I called it God. The condition that would require immediate surgery was no longer there. We were going to get to take our daughter home for a few months before her heart surgery. Her Down syndrome diagnosis was suspected to be a form called Mosaic Down. I am hesitant to say, a less severe form of it, because its not always, but in our case, our daughter falls on the extremely mild end of the spectrum. Doctors called us lucky, I say we would have been blessed no matter how severe our daughter was.

Some days I was stronger then others. Most days, I cried. But as the months progressed, the tears changed from tears of mourning to tears from anxiety. I needed my baby to be in my arms. To see her face, feel her breath and to see that she was okay.

Fiona Hope Blaeske was born August 16, 2010, with a medical team prepared for the worst. But to every ones relief, she was better then anyone had anticipated. Her Down syndrome characteristics were so mild it had us questioning the diagnosis. And with the right concoction of meds, we were able to wait until she was 5 months old for her heart surgery , which was successful.


Her clubbed feet, that I was so terrified I wouldn't be able to look at the deformity, I couldn't get enough of. Now that we are fixing them, I miss the way her tiny baby feet could tuck up under her so comfortably.


She is a little bit behind for her age, mostly because her heart made her so weak for the first 5 months of her life. She doesn't just do stuff on her own, it takes teaching her and working with her, but eventually she gets it. And by teaching, I mean playing with a purpose. The early intervention state programs are amazing, and free! We get all the therapy we could possibly need through the state. Ours even comes to the house!

When ever I am looking at my beautiful daughter, I often think about the doctors who encouraged me to terminate. Its a rush of anger and sadness that over comes me. Anger that anyone would want to "get ride of" this gorgeous, incredibly strong baby. Sadness that they are ignorant about how wonderful the road less traveled is. And that they are ignorantly giving advice to scared mothers and fathers.


I know that my daughter is very well off compared to a lot of people with Down syndrome. But since she has come in my life, I have met lots of amazing people that fall all over the grand spectrum this disorder has. Their lives are challenging, but far from tragic. Because they make such positive impacts on everyone around them. Their parents all seem to be in agreement with us that the good parts completely out weigh the bad parts.

At Fiona's recent well visit, I filled out a development questionnaire. An are they doing this yet form. I checked off one Not Doing Yet box after another. But when it came down to the last two questions I was surprised with my response. Do you have any concerns with your baby? and
Are you having any problems with your child? My answer to both was NO.



I am not concerned with anything Fiona isn't doing yet. Because I know she will. And I am not having any problems with my daughter, she is amazing and motivated and setting her own standard of normal. This is what I wish I knew when I first got her diagnosis. I wish I could have tell-a-ported to this exact time and saw how content I was with this pace of life. I posted about using the "R" word a little bit ago. It comes from the Latin word, ritard, a musical term meaning to slow down. A beautiful slow down of tempo. That's what life with Fiona is like, a beautiful slow down. When people see how tiny she is and guess that she is only 3 months old (shes 9 months), or when she needs a little extra help learning something new, I am enjoying this slower pace of growing up. The tortoise wins the race. I know at some point, the gap will grow bigger, and my baby possibly may never be, say, a bio engineer or the first woman president (but, then again, I am not going to limit her potential!), but I have no doubt that my daughter will be a valued member of our society, the light of any room she walks into, and I couldn't ask for more.


If you are an expectant parent, scared of the future, trying to find hope, you will find it here- in the blogging community. It is what opened my eyes to the beauty of these kids, these people. You will find open, honest, but mostly beautiful windows into how blessed your life will be with that extra chromosome. I know that you may be looking at my daughter and thinking, "Well, she ended up with the best case scenario, but there is much worse" and you are right. But keep looking, because you will find even the worst are unbelievably blessed and beautiful and loved. I am not a special person to have a child with Down syndrome. I am no super hero or mother of the year. I just love my daughter.

Other source of comfort- National Down Syndrome Society's My Great Stories
Read Fiona's My Great Story HERE

Thursday, May 26, 2011

Why?

When something bad or unexpected happens, the first thought is always WHY? Why me? Why this? Why now?

And when something really bad and unexpected happens, it feels like your world is ending.

We have been through a lot with our daughter. Through warnings that we might lose her, blood oxygen scares and open heart surgery. The phone call that changed everything. Bad news upon bad news that at times seemed like the worst thing in the world. But none of it really was. It was hard, it was painful, but it was never as bad as it could have been.

I could have had to give birth to a dead baby.

I could have lost her that day we tried to take her casts off at home.

It could have been the last time I saw my baby alive when I covered her with my tears as I kissed her goodbye for her surgery.

Her legs could have been beyond repair- she could have been in a wheel chair the rest of her life.

She could have been deaf or blind or both.

The could ofs are endless.

And for people these could ofs are reality.

Today, a family had to say good bye to their brain dead 6 month old triplet boy. 

Today, hundreds of women miscarried.

Today, someone lost their child in a car accident.

Today, a child lost their battle with leukemia.

Today a child was stripped from an orphanage, the only home they ever knew,  had their head shaven, was chained to a bed and was left in their room to figure out this was the hell that would now be there life, all because they have Down syndrome.

Everyday, someone somewhere goes through very bad, very unexpected loss.

God has graced me with the gift of empathy. Its my cross to bare. I find my self sharing horribly sad stories all the time because they consume my thoughts, my prayers. Its like word vomit- I can't stop from talking about it. No one likes to hear about sad stories- most people run from it.  Ignorance is bliss. I often think about a scene from The Beach where a character gets gangrene, and they drag him out to the woods to die
 "You see, in a shark attack, or any other major tragedy, I guess the important thing is to get eaten and die, in which case there's a funeral and somebody makes a speech and everybody says what a good guy you were  Or get better, in which case everyone can forget about it. Get better or die."
Nobody wants to have to deal or think about bad/sad things. Sweep it under the rug, keep it behind closed doors, drag it out to the deepest part of the woods where they can scream in pain and we can't hear them so we can go on and enjoy our lives. But I am Richard. I am the one who goes out to the woods and cleans the wounds and does what I can to keep them in as little pain as possible.  


Why did God put me through having to watch my daughter suffer? Why did he make her different? I am pretty sure part of the plan was he knew my power of empathy would be put to better use. That it would grow stronger, that my eyes would be opened wider past my home, my family and myself. It felt like my world was ending, but it wasn't. It never is, because even in the worst of situations, there is always at least a gleam of hope. Always. Some times it just takes longer for the clouds to clear. 


Pray for Owen. Pray for his once triplet-now twin brothers, his older brother and the parents he left behind. The mom who has to get ride of her triplet stroller and start searching for a double. The brothers who will live the rest of their lives with a piece missing. The painful changes in their lives has only begun.


I know this post wont be read by as many people as my look-how-wonderful-life-is-we-are-at-the-beach-again posts are. Because its sad. It sucks to know how bad life can be, how ugly and cruel. 












He has told you, O man, what is good; and what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?



  Micah 6:8

The bright side of bad

I really needed for it to be Thankful Thursday, because there is a lot of negative in my life right now that can easily bring me into a negative place. But, there is always something to be thankful for.

Thankful that the Supreme Court overruled the original ruling that the Davis family could indeed adopt Gregory Kirill Davis, a little boy in EE who has Down syndrome. The first judge deemed the boy "unadoptable" simply because he has Down syndrome. He told the family they could adopt another healthy child, but not him. But thanks to hundreds of people donating money to appeal their case, a judge with a better understanding, and God softening hearts and opening eyes, Kirill is no longer doomed to a terrifying life in an institution, but is on his way home with a family.


Thankful that my dad is recovering well, and that the kidney donation was successful! 

Thankful that my daughter will someday walk.

Thankful for my boys who look after their baby sister.

Thankful for a husband who knows that it takes effort to make marriage work, and never takes what we have for granted. And thankful for our Thursday date nights, and the opportunity to get out of the house, wear sexy heels and spend time together, alone. 

Sean Ocean photography

Thankful for healthy kids. This is relative, but no one is dying, no one is throwing up. That's definitely something to be thankful for.

Thankful that Breiden looked at me last night after a horrible day, and said "Mommy, you look beautiful"

Thankful that two out of my three kids wake up on the right side of the bed in the morning. Which two is constantly changing, all three would be ideal, but I'm thankful for two.

Thankful that our good friends and my little sister are coming down next week!! 

Thankful that I have stuff to be thankful for in my life. 

What are you thankful for today?

Wednesday, May 25, 2011

Shoes with the Bar

Its the first day with casts all over again.

Non. Stop. Screaming.

She can't get comfortable. She can't get free. And I would bet her little footsies are aching from being turned out. Holding and bouncy her offers temporary distraction, but my scoliosis-back can only take so much before it cramps up and feels like I am being stabbed with a thousand knives. I really don't know which is more painful, the knives or the screaming.


"She'll get used to them" and I am sure she will. She did with the casts. But I hate seeing her so upset. I've always been worried about her heart whenever she throws an all out tantrum, which is not a normal thing for my laid back, easy going baby.


Clubbed feet is apparently an extremely common thing. And I am always running into people who either had them or who knows someone who did. But I have never seen another baby in casts. I have never ever seen another baby in these horrible, inconvenient, restraining shoes (that she has to wear for 2 years).


We will get past this uncomfortable hump. Hopefully. There are a multitude of other possible bumps down the road though. Crawling and walking- possible with the shoes, but more difficult. My baby turning into Houdini- its vital that she keeps these shoes on for maxim results. And we have to find out how to pad that bar, because she used her casts as deadly weapons, I am sure she will get us with that metal bar. Also have to figure out how to paint it, because, red, seriously? The only color they make the bar in. Why not silver. Or gold, you know the colors metals normally are? Or anything that is neutral that I don't have to worry about my daughter's outfit clashing with her silly bar. Okay, so that last problem is really low on the totem pole. I am still working on not getting hung up over the shallow stuff. But I found myself kinda wishing for the casts back today. The grass is definitely not always greener. 2 years seem like forever from now, but then again, the boys are turning 3 and I am wondering where on earth did that time go. One day, I will only barely remember this inconvenience as part of the past. 2 years is nothing for a life time of usable legs for my daughter.

Pray for patience... for me, and comfort for my daughter.

Monday, May 23, 2011

Faith, Hope, and Love

Do you want the good news or the bad news first? Most people would say the bad news- get it done and over with and let the good news make it all seem sweeter.


Fiona had her 9 month well visit today. 9 months is always a crazy mile marker, because 9 months of pregnancy was a life time but these 9 months were a blink of the eye. Every week Fiona has some type of therapy. OT, Speech, PT or ITDS. And each week we go over a check list of where she is developmentally. That check list is nice and full of happy little check marks, and we concentrate on those victories a lot. 

Well, pediatrician world is a little more harsh then therapy world. As I checked off one "Not Doing Yet" box after another, my sweet little girl fell further and further behind from the norm. But I surprised my self, because the last two questions were Do you have any concerns about your child? and Are you having any problems with your child?, and my answer to both was NO.


I am not concerned with anything Fiona isn't doing yet. Because I know she will. And I am not having any problems with my daughter, she is amazing and motivated and setting her own standard of normal. This is what I wish I knew when I first got her diagnosis. I wish I could have tell-a-ported to this exact time and saw how content I was with this pace of life. You know, I posted about using the "R"word a little bit ago. It comes from the Latin word, ritard, a musical term meaning to slow down. A beautiful slow down of tempo. That's what life with Fiona is like, a beautiful slow down. When people see how tiny she is and guess that she is only 3 months old (shes 9 months), or when she needs a little extra help learning something new, I am enjoying this slower pace of growing up. The tortoise wins the race. I know at some point, the gap will grow bigger, and my baby possibly may never be, say, a bio engineer or the first woman president, but I have no doubt that my daughter will be a valued member of our society, the light of any room she walks into, and I couldn't ask for more.



Reece's Rainbow is helping special need orphan children find families that will have as much faith in them as we do for our Fiona. And this mom is helping one little girl come closer to finding her family.


Meet Albina. An orphan in Eastern Europe who needs a family to show her how amazing she is. Because as of right now, her country tells her she is less then dirt. (Seriously, look at that face!!) An anonymous donor has agreed to match dollar for dollar up to $5,000 to go towards Albina's adoption fund. The adoption funds are huge in helping families financially bring their kids home. Read this blog. I wish I could do more  for that sweet face then a measly donation, but we have to start somewhere.


Sunday, May 22, 2011

"Look at me!"

"Watch me do dis cool trick, mom"


"Sweet trick, little man!"


"Watch me, ma. Watch me do dis"


"I'm watching you. Wow, I saw, that's pretty cool"





I love this age. Its all about "I do it my self" and "look how awesome I am". They take pride in what they are able- or think they are able- to do. Most of their "cool"tricks are not really tricks, let alone cool, but I love to give them my complete attention. Its all about what you are doing, right now, in this moment. Whether it be a weird attempt to break dance or a cannon ball into the pool that is more just falling in the pool with no form, I am watching. And we are going to jump and high five that you are trying to do new things.

Oh, and its even more delectable when they ask each other to watch them, and cheer each other on. Its a great parenting moment when they encourage each other. Ya, that's the icing on the cake.

Friday, May 20, 2011

Little Miss Independent

I have avoided jumping on the daily alliteration posts because its not really my style. But there is one that I can't resist anymore- Thankful Thursdays. Yes, I know today is not Thursday, but lets over look that because I'm excited about this and there is a lot to be thankful for.

Thankful Fiona got her casts off.







One last time sitting the bench at the pool today, a wonderful extra long nap time for everyone in our house, and showing up to our 4:30pm ortho appointment to find out it was really at 9:45am (thankfully, our Doctor is amazing and stayed late to take us), Fi's got her feet back. They are straight and perfect along with her chubby legs that have been hiding under the casts.


Perfectly straight little piggies :)



Thankful for hitting a milestone.

She is feeding her self a bottle! At least for her daddy, and occasionally for me. My sweet pea would rather snuggle up with me and have me feed her then to hold the bottle herself, but at least we know she can do it.

Thankful for good friends. Whether it be a girls night out, help with the kids or both, my gratitude for the women in my life that are there for me is endless.

Thankful for my children's friendship.



I never thought about what having a third child would do to the twins. I figured there would be some jealousy, but most likely they would be apathetic to a little baby being around. Not only is there zero jealousy, but they can't get enough of their little sister. They insist on her sitting near them when they are playing, and Fiona is the only person Breiden lets touch his special blankie. He gives it to her, and is so proud that she likes to snuggle with his blanket. Life may be hectic with three, but its without a doubt better with three.

Thankful for my dad. That he encourages me every day to be thankful for the good in my life, even when there is a lot of bad around it. Life is so much more enjoyable when you are positive.

What are you thankful for today?

Thursday, May 19, 2011

Scars, 3 years and 9 months

Sometimes, as I am holding Fiona, my fingers graze across her scar. It always shocks me to feel the distinct raised texture on her baby soft skin. My stomach flips from the flood of thoughts of why that scar is there- that they cut into her chest.

On my husbands birthday, just a few weeks after we had met, I was hit by a drunk driver (ironically, I was being a DD that night). At a full stop, waiting to turn out of my now husbands neighborhood, the driver took the turn too fast, jumped the curb and t-boned the drivers side of my car. Big F-150 against my little Alero. I hit my head both on the window and the steering wheel, the drivers window and the front windshield both completely shattered, and I was knocked unconcense, completely covered in glass. I didn't come to till sometime at the hospital, and vaguely remember throwing up on a nurse while a team was picking out hundreds of shards of glass from my back. The left side of my upper back and shoulder was left looking like I had been attacked by a tiger and healed into a pethera of scars. I hated those scars, and had every intention of using the settlement money to get them fixed by a plastic surgeon. I had to let the scars heal before I could get anything done, and by the time I could fix them,  I didn't really care about the scars anymore. They became a part of me, a part of my story. (And a good reminder to never drink and drive).

I remember when the doctor first was describing Fi's heart surgery to us. He talked about the scar. He addressed the subject with such concern... as if the scar, not the surgery, was going to be hard to cope with. Its a rather large scar, on a delicate place that could cause insecurity issues for a girl. And just like with her clubbed feet and Down syndrome diagnosis, I shallowly was scared of my daughter physically being different.

Fast forward to three months after Fiona was born, I meet Makenna. My girlfriends young niece who has been through a few heart surgeries. This girl is amazing. Such a character and such a heart ( both medically and metaphorically!) I know she has been a prayer warrior for Fiona, and her beautiful handmade card that she sent Fiona after her surgery still hangs on our fridge. She completely changed how I would feel when I look at my daughter's scar. Because every time I see that red, shiny line peeking above Fiona's shirt, I remember Makenna. And that they are "scar buddies". And for some reason, that makes me smile. I don't know why her saying that has stuck with me, but its a constant reminder how there's beauty even in a scar. I never try to hide her scar... I used to think I would. The scar is there, in almost every picture, and all I see is that perfect little heart that now beats so soft and smoothly. Its part of her, part of her story.

Here are some more beautiful pictures, taken by Sean Ocean in his studio. Fiona's 9 month pictures, strutting her cute self, scar and all, and Gavin and Breiden's 3 year pictures. Really, if I hadn't just put so much emphasise on her scar, I bet you wouldn't have even noticed it, cause her sweet face totally takes center stage.


My first borns, the two that first stole my heart and made me a momma. I am in awe of these handsome gentlemen we created. They are my daily dose of laughter and I pray they are never too old to snuggle with their mom. Love you, B&G















Even imperfection itself may have its ideal or perfect state. Thomas de Quince
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