24 April 2010


All of our kids have Gaelic names. My husband's heritage is Scottish and mine is Irish/Scottish. When I got pregnant with my first child I knew I was going to name them 'Riley' whether it was a boy or a girl. When I found out the baby was a girl, my mom suggested the spelling and our Rylie became a reality. I knew it was Irish, but I just really liked the name. I didn't pick it because of it's ethnicity.

When I became pregnant the second time and we found out it was a boy, I had not decided that Gaelic names were going to be our family trend yet. Shawn really liked Ian (which is Gaelic) but I really liked Cole. I knew he was going to be born with a shockingly full head of black hair because his older sister was. And I figured the name Cole would fit. But, when he was born, I knew how much my husband liked the name Ian and Ian really seemed to fit him better.

Thus was born the tradition in naming our kids with a Gaelic flair (their middle names are all Celtic too).

When I became pregnant with our third baby, and found out it was a girl, none of the names I suggested did my dear husband like. NONE.

During my 8th month of pregnancy, I was crying to him on the phone about how much I wanted to get a name picked out when I suggested (again) a name I really liked. He still didn't like it. But then I told him that the name Aidan was Gaelic for 'fire' and then he loved it (his nickname in high school was 'pyro'). And so her name was chosen.

Our fourth child, when we found out it was a girl, was much harder to name. I didn't like anything my husband was picking and the name I really liked he didn't like at all. When she unexpectedly died, we were thrust into a situation on what to name a baby that would never live to grow into her name. What do we name a little girl that we'll never get to sing to, to play with and to yell her first and middle name at? Do you use your favorite name on this little girl when you are praying that someday in the future you would be able to use that name on a girl that would live? Do you give up a beloved name to a child that you'll never raise?

As I laid holding our girl, I realized what her name should be. She is our only child that does not have an Irish middle name because her middle name is mine as well. Her first name was the one my husband did not like and the one that I loved. And I chose Kyle Ann as the name that would be forever carved in cold, grey granite.

Three months after burying Kyle Ann, I was surprisingly and unexpectedly pregnant again. And this time it was twin boys. Thinking of names became so much harder because I didn't want anything that rhymed and nothing with matching initials for them. But coming up with 2 first names and 2 middle names was difficult. I had a list of names I liked and I would put them all together in every which way possible to see what we liked. I also looked at the meanings of the names and would write the meanings to all of them on my list so I would have it as a deciding vote. I knew the deciding factor on Aidan's name was because of what it meant, so I wanted to be prepared.

I felt 'Baby B' kick me very early on in the pregnancy. Around the 14th week, I could feel him fluttering around. I would consistently feel Baby B and hardly ever felt Baby A. I would use a doppler to check for a heart rate on Baby A because I not only was scared of a repeat of Kyle Ann's death, but since I didn't feel him as much, this helped me keep an
eye on him.

Because I felt Baby B so much, I nicknamed him Brady. B for Brady and because Brady means spirited. And he was so very spirited. So much so, that the name stuck right away.

I had an idea for Baby A, but Shawn didn't like it. I tossed the name around a bit and although I wasn't fully sold on it, I did think saying the boys names together sounded good. I figured I would be calling them out loud a lot in the coming years and saying them together sounded good.

As you all know, I didn't get to be pregnant with my sons for long enough. They came so unexpectedly and so quickly that we didn't have the names picked out yet. When they were born and the nurses asked me for their names, I didn't know yet what they were going to be for sure. So, their tags for the NICU stated Twin Baby A McIntosh and Twin Baby B McIntosh.

When my husband was finally able to get to the hospital, I asked him to bring my list of names. He had to head back home to be with our other children and I sat on the hospital bed, pouring over my list, trying to decide what their names should be.

I only remember moments during the first few days of my boys birth. I don't remember a specific conversation with anyone regarding Baby B and the fact that he wasn't in as good of shape as Baby A. But somehow I knew that he was worse. And after looking through my list, I went back to my original name for Baby B and named him Brady. It fit what I knew of his personality and the spirited little boy I knew in my womb was the spirited little boy I wanted to see fight on the outside. He was always Brady to me. And because he needed to be my spirited fighter, I chose Kellan to be his middle name because it meant warrior.

For Baby A, the name I had called him while in my womb was not what I decided he should be on the outside. Because he was the stronger of the two, I chose the name Liam because it meant protection and I wanted the stronger brother to protect his weaker brother. Murphy was to be his middle name because it also meant warrior (of the sea).

And so the boys names were chosen.

Out of all of my children, their names were the most considered, the most dwelt on and the most significant. Their names were chosen because of who they were in my womb, who they were to us and because of what they had to face when they were born.

Their names are significant and while our Brady was not able to fight off his prematurity, he was a spirited warrior while here on this earth.

And Liam?

While his name means protector, it also means warrior.

And he is our warrior every day.

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20 April 2010

He likes drumsticks.

I wish he liked the non vegan kind that you can get fried, baked, and grilled.

But he's not there.


But he likes to play with Ian's drumsticks.

He likes to cross them and bang them together.

But for this photo he gave me a rockin' drummer pose.

And the sly sideways smile to boot.

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19 April 2010

Counting down.

The countdown has begun and Liam and I will be leaving for Miracle Mountain in 13 days! This will be Liam's second round of hbot. We have a few more details to finalize; getting all the cash needed to go (costs went up for this year and they are a cash only business), getting all Liam's supplements, making sure the family here will be taken care of as best I can before I go, making sure we have all 100% cotton clothes (you'd think that would be easy, but alas, it is not in this day and age!) etc. etc.

I'm excited to go. I loved it in the mountains of NC when I was there in November. It's so beautiful and peaceful out there. And I will get to meet a fellow micropreemie mom who's story is very similar to mine in that her boys were born at 24 weeks and she also had to bury one of her sons. Her surviving son is afflicted like Liam is with CP and he does not have head control either. We have known each other since we were both pregnant and our sons were born only weeks apart. I will also get to see a young man and his dad who I dove with the last time, so I am very much looking forward to going.

If you could, please keep us in your prayers as we go. Specifically, that the oxygen would help Liam make even more changes in his physical and mental capabilities. He made so many neat changes the last time around. I know God is able and to that end I will continue to pray.

And as always, thank you so much for your support. Whether it's monetary, mental, or spiritual is irrelevant. It all means a lot.

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16 April 2010

Purposeful positioning

Liam is using both hands to hold a toy at his mouth. This is so hard for him to do because his CP keeps him from using his arms purposefully. His shoulders will literally fling his arms out and to his sides when he lets go of a toy. He has to fight really hard to get his arms to the front of his body and then he is only able to hold this pose for moments at a time before his arms spring back. But the fact that he was doing this at all was a big deal for his OT and me. We were so proud of him. It's the little things that mean so much! =)

12 April 2010

A new presence.

We have had an aid here in the house for the last two weeks. While it's a very weird feeling having someone here with me, it's been fairly easy to get used to because she's really helpful.

D comes to my home 3 days a week and is pretty much at my beck and call. If I need her to do laundry, pick up around here, or clean up anything, she's always ready and willing to do so. If I want to play with Liam, she will get busy doing things around the house and if I need to do anything apart from Liam, she will play with him while I am busy.

So far, it's been a good relationship.

And she was employee of the month last month!

Yay for me, because I wouldn't trust this bundle of smiles with just anyone. I've only left him with one other person besides my mom! And D is good with kids so I feel pretty good about her.

The kids have adjusted just fine to D being here as well. I think the hardest part is trying to remember not to schedule anything on the days she is here. We can't cancel too many days because Liam has to have the aid to have medicaid.

But for now, we are blessed and it is good to have the extra hands around here.

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10 April 2010

A perfect day.

After playing with Aidan in the hammock...

We took our naps together...

While Ian snapped photos of us snoozing...

And took a perfect picture.

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06 April 2010


Any mother of a child with special needs will tell you the same thing. They no longer see the world the way they used too. Not only does your mind get opened up to a group of people that you might never have related with, but your soul gets touched by the experiences of everyone you encounter with special needs even though theirs may be drastically different than yours. Because deep down, we all end up dealing with the same struggles.

We learn to let go of certain dreams, to focus on the small things, to enjoy each day as it comes and never take anything with your child for granted.

And we also learn to deal with people's ignorance.

Case in point:

People go around using the word retard today in reference to anything and everything that might be considered stupid. They use it ALL THE TIME. That driver is a retard, they didn't even signal! That idiot didn't even stop! What a retard. He's retarded. Everyone seems to say it now. It's so common place that little kids are using it in their everyday language.

And the reason for that? An ever evolving English language and ignorance.

Ignorance because people must not have any knowledge about how hurtful this word is to so many people.

Ignorance because they keep using this word in a manner that is degrading not only to people with disabilities but to the people who love and take care of them.

And ignorance about what exactly the word retard means.

I will be the first to admit that this was a word I used. And it's a word my children ended up using. I never, ever would have used it to describe a person, but I definitely would have used it in the scenario I described above.

But, then Liam came along and I saw that new world. I've never been able to go back and see the world again the way I thought that it was. It has forever been changed for me. Long before Liam started showing signs of global developmental delays due to his extreme prematurity, I would read blogs of moms with kids who didn't have the issues Liam faced and their kids were teased as retarded. I read the anguish in the parents posts and I felt their pain too because I know this world isn't an easy place. I knew that the time could come when Liam might get teased and the momma bear in me knew right then and there that I could never allow my kids or myself to say that word again. It's too painful and disrespectful. This word has been taken out of context (for it is defined as to make slow or to hinder) and used for the most asinine of conversations.

But one thing really drove home for me that this was a word that is no longer acceptable in my life.

I was at the park this week swinging with Liam on the swings. He loves the movement and not only giggled at Aidan whizzing by but was laughing at our own motions together as we flew through the air. Two swings down from me is a swing for kids with disabilities (I am so proud of our park for putting one in because I have never been to another park, anywhere, that had one) but it is way too big for Liam. Aidan, my 8 year old can sit in it it's so large. Well, two girls about 8 or 9 sat down in the seats beside me with one of them sitting in the 'special' swing. An older teen girl started pushing her in it and said, "You are such a retard. You're sitting in the retard swing." And then the girl laughed and proceeded to echo her by saying the exact thing back to her. Then the other young friend on the regular swing started in saying "You are so retarded you have to sit in the retard swing." The two young girls mocked and ridiculed 'retards' all the while laughing at their funny jokes.

I was so mad I was shaking. I knew I couldn't say anything rational while so angry so I didn't speak up. The conversation with the 3 girls transitioned over to their IQ's and to who did better on their end of year tests when one of the girls said that her score was better so she obviously wasn't the retard.

That was when I decided I had to say something.

I turned my head to the girls and said, "You should not use the word retard because it isn't nice. That is not a retard swing. You are sitting in a swing that is meant for people with disabilities. Having a physical disability or any disability does not make someone a retard. Retard means slow and it is offensive to use."

That was all I felt I could say. I don't know if they care what I had to say or if they understood what I said, but I knew I had to say something. The girls started to go back to their conversation about their IQ's and tests and the teenager told them that that was enough so it curbed any further dialogue from them.

Although I was so angry for their callous use of that word and their very description of the kinds of people who would use that swing, my heart was broken over the realization that ignorance to the prevalence of this word and it's hurtfulness to so many people continues on unabated.

I have vowed to never use that word nor are my children allowed. They know why. And I hope we, as a family, can take the step to say to our friends and family why we won't use that word anymore and why we would appreciate it if they chose a different word to describe something.

The next time you hear that word, think about all of us families with kids with special needs and how we feel about that word. Because it isn't just a word to us.

*Short bus, lame and special ed all apply here as well.

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04 April 2010

Happy Easter!

This is Liam's 3rd Easter!
Although I wish he could participate in enjoying a basket filled with candy, he did partake of his siblings Reese's peanut butter eggs! He actually ate some of it. Shawn has always introduced the kids to chocolate and Liam is no exception! Shawn let him lick and nibble some bites of it and Liam really liked it. Enough so that he got chocolate all over his face.

I wanted to put something in Liam's basket this year but since he doesn't eat candy I decided to put some toys in it. The box was too big for both so I put the train in the basket and just set the other beside it.

When Liam saw his basket he reached right out to play with the toys in it. He's been enjoying playing with his new train today.

And just for a comparison, here is Liam with his Easter basket for his last three Easter's:

He's grown up quite a bit!

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01 April 2010

Another Dr.

We met with a new Dr this past week. I know. I know. You are thinking just like I am...not another one???

Yup. This one was an orthopedist. I had been touted about how lovely a Dr he was a long time ago at our GI but that was when Liam was small. Cathy then mentioned that I should see him recently and I didn't put two and two together until right before hand that this was the same guy.

We had an uneventful appointment.

I liked him. He was a really good guy. He gave his email and said he always responds to emails so if we have any questions that we could ask at anytime.

But, he didn't have anything new to add to our information/routine/issues with Liam.

He said that Liam had athetoid CP, which I had heard before a very long time ago. Liam seems very athetoid like in nature yet he can relax and stop his movements and you can't do that with athetoid. So when he described his movements as athetoid, I said "Yes, but look at this." And then I proceeded to put my thumb in his mouth and he started sucking on it and quit all of his athetoid like movements. And then the Dr said, "Well, he has athetoid like movements until you do that."


No answers.

No new information.

So, we just trudge on.

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