27 November 2013

~Happy 6th Birthday Boys~

It's been 6 years of birthdays with out Brady here to celebrate them with Liam. It's been 6 years of moments that we look around and think that there should be two boys right now giggling, splashing, or cuddling with.  It's been 6 years of trying to heal from the day we got to meet Brady but then said goodbye just one short day later. It's been 6 years of trying to honor Liam's birth day and not be sad that Brady isn't here to celebrate his special day too.

Job 7:11 Therefore I will not refrain my mouth; I will speak in the anguish of my spirit; I will complain in the bitterness of my soul.

This date is bittersweet for so many reasons. But one of the most important things it does do is remind me that no matter how difficult things are, I would never trade the hard days we go through if it meant not having Liam at all. The cost has been high, but the trade-off would have been worse.

I can't think back to Liam's birth day with out rehashing the grief that the day brings, the knowledge that there is an empty spot at the table where Brady should be. But I also can't think back without being grateful because it's the day that brought Liam to us. It's the day we get to celebrate Liam growing another year older. Brady didn't get that chance. Those boys, this day, are inexorably linked and it makes for the bittersweet day it always is.

Proverbs 27:7 But to a hungry soul, every bitter thing is sweet.

My soul, however downcast, always sees the extraordinary brilliance of a plan greater than my own, where one day we will all see Brady again. We will all get to marvel at the joy of his soul and be grateful for the heartaches he got to leave behind when he left this earth. He never had to know the pains we experience and for that I am eternally grateful. We will see him again.

We celebrated the day with cupcakes and presents and got our hearts filled with joy watching Liam crack up to his new Mickey.

Lookin' fly when I picked him up from school.

Mickey is hilarious!!

You can see how thrilled he is about the cupcake. Umm no.

So, happy birthday my sweet boys. It's been 6 years of crazy and I am so thankful to have been a part of it. I love you both more than words can say.

2 Samuel 12:19-23 When David saw his servants whispering, he knew that the baby was dead. So he asked them, “Is the baby dead?” They answered, “Yes, he is dead.” Then David got up from the floor, washed himself, put lotions on, and changed his clothes. Then he went into the Lord’s house to worship. After that, he went home and asked for something to eat. His servants gave him some food, and he ate. David’s servants said to him, “Why are you doing this? When the baby was still alive, you fasted and you cried. Now that the baby is dead, you get up and eat food.” David said, “While the baby was still alive, I fasted, and I cried. I thought, ‘Who knows? Maybe the Lord will feel sorry for me and let the baby live.’  But now that the baby is dead, why should I fast? I can’t bring him back to life. Someday I will go to him, but he cannot come back to me.”

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22 November 2013

In Honor of Brady

To know that someone was blessed simply because my child existed is an emotion that I can't quite explain.

Kate is a mom who grieves over her lost son and the might have's and what could have been's. She sees in Liam what might have been if her son survived and she sees in Brady the loss she shares with her son Roscoe. We connected last year through my blog and this sweet woman gave a beautiful donation to Liam for his stem cell treatment in honor of Roscoe.

This year a friend of hers left random acts of kindness envelopes all over their town in honor of Roscoe and his birthday. Kate decided to spread the love further and on her birthday she put random acts of kindness envelopes, one for every year she's been alive, through out her town in honor of the lost babies she has come to know through the death of Roscoe.

She sent me this picture of an envelope left in Brady's name at a gas station.

The envelope says:
Random Act of Kindness
Have a gallon on me!

I am truly at a loss for what to say to such sweet, sweet generosity in the name of my son.  This person will never know who Brady is, how important he is to our family, and how much we miss him. But this person was blessed because Brady existed. To know that my son inspired such a generous idea is precious to me.

Thank you, Kate, for blessing me through your loss and blessing others through Brady.  You are an amazing woman and your heart and your love of Roscoe will continue to inspire and to bless others. Kate, you inspire me. My prayer is that my journey would do the same for others. <3 br="">
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06 November 2013

Lessons Learned

A host of missteps led to Liam being in the ER for over 6 hours last week. Simply because of a pulled g-tube.  I've learned from my mistakes, the school has learned from theirs, and nothing like what occurred will ever happen like that again.

Liam pulled his gtube out at school while he was being fed. It's not a big deal, you use a syringe and easily deflate the balloon and pop it back in. The school nurse, however, failed to notify me until 2 hours had passed. That is still not a big deal because Liam has had his g-tube for four years and there is no way his stoma is going to close up that fast. I was about a 30 minute drive away from school when I found out and I assumed when I was notified that it had just popped out. They didn't say it had been out for hours. I didn't bring anything with me to school to put it back in and figured I'd just take him home and do it there in privacy.

When I got to the school I wanted to put everyone at ease about it not being a big deal. When I walked in the door I immediately told them it was ok, no biggie, and that I could just pop it in myself. They were thrilled to hear that all was good until I told them it had to be put back in within an hour. At that point their eyes got huge. They told me it had been out for over two. I grabbed Liam and headed out the door telling them we were probably on our way to the ER. 

I got home and was unable to get his used gtube in. I didn't have a spare (thanks to my med supply company) but I did have a foley catheter. I put the foley in with no problems. I just couldn't get the squishy old gtube to push through his stoma. Liam looked uncomfortable and I didn't want to inflict too much pain on him. So, I figured, I would just go to urgent care, have them numb his stoma and then push the gtube in. WRONG.  Unbeknownst to me, urgent care was useless and they don't help you at all if it involves a gtube.

When I got to urgent care they checked Liam's O2. He was satting low because he was coughing on his spit. The check in nurse got nervous at his low levels even thought I told her he doesn't require oxygen, he wasn't sick and it was just his spit at the back of his throat. She put him on O2, called for the ER nurse to come get us, and they whisked us to a bed.
Doesn't he look cute satting in the 80's?

And all I wanted was numbing cream.

Pulse oxes are pointless-just get me some lidocaine peeps.

Once in the ER, we were checked and spoke with the nurse about what was needed. Of course, we got the standard response, "The Dr. will be in just as soon as he can." 

I'm not going to go into all the details because it's a very looooong story of me getting mad at the nurse station because we had seen no one in hours, demanding my own foley to put in myself along with numbing cream, getting mad at the nurses station again when we still didn't get the supplies I needed, and then finally a Dr. coming in who had never seen a gtube like ours, had no idea as to how it went in and stayed in and was essentially no help at all. FIVE HOURS LATER!
Spongebob is the bomb.

If you all don't believe in God yet from reading the miracles that have taken place in our lives, let me show you one more:

A friend happened to get called in. He checked the admittance list for the ER and saw Liam's name. He came down to check on us and see why we were there. When he saw the situation, the stupidity of what needed to be done and what wasn't, that I was about to lose it after being there now for SIX hours, he said he had a Dr that he could call who could get us fixed up and out of there in minutes.

This guy did in a few minutes what the stupid ER couldn't in over six hours: get Liam's gtube in. All I needed, at hour ONE was some lidocaine.  That was the only reason I went to urgent care. I was trying to make it a bit easier on Liam to get the gtube back in.  What that ended up costing me was 7 hours at the hospital, a few lessons learned, and a little boy with a bloody gtube site. But what a gift it was when God sent a friend in after hours who knew exactly what to do. He does take care of us when you look to find it.

Holding Liam's stoma open with a lidocaine covered swab.
Liam's gorgeous, non leaking, perfect little stoma is now suffering from granulation tissue problems. I had to put silver nitrate on it last night and now the whole area is black from the application and red from the chemical burn of it.  I'm praying that the tissue issue gets resolved quickly and his little stoma gets back to looking perfect. We may have to have a session of myofacial release to get everything back to normal. Every Dr who has ever seen his gtube site comments on how fantastic it looks but right now it's ugly and raw. Luckily, Liam is such a trooper and other than the initial discomfort of trying to get the old one back in he hasn't complained a bit.

What lessons did I learn?

1) Make sure the nurse knows to notify me immediately if anything occurs like that again. 

2) Always have a back up gtube on hand. I had quit getting them because I don't change them out very often. They were just piling up in our closet. Once I went through the supply I had on hand I called to order more and they would only give me one even though I hadn't received one in a year. That left us with no back up. So, instead of saving insurance and medicaid money, I will just have them deliver them every 3 months whether I change them or not so I never have to worry about having a back up.

3) Urgent Care and the ER are of absolutely no help if you are dealing with a gtube issue. Urgent care doesn't even touch them. The ER carries no gtubes, the Dr's have no idea how one goes in, and if you don't have your own supply of equipment you will get a foley and get sent on your way to your gastroenterologist. None of that is helpful to a mom who has been changing out her own son's gtubes for 4 years. I can do all that myself with out them.

4) Even at times such as these, when nothing is as simple as it should be, when nothing is going right, and your anxiety is mounting over a banal issue, God is there, seeing that you are covered, watched over, and provided for.

Some lessons are learned the hard way. While we might wish the lesson didn't require of us what it took, nevertheless they are lessons that won't require repeating.

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18 October 2013

Field trip's a trip

Remember how fun field trips were when you were in school? It was a day off from school work, we didn't have to sit in the chair all day and work at the chalkboard, and we got to do something interesting and exciting, something out of the ordinary. Normally the highlight of the week was getting picked to go outside and clean erasers, seeing how many words you could spell before the chalk dust faded away.

I still remember some of my favorite field trips though: getting to see how milk was bottled, going to the fair, seeing the local community theater, and visiting the fire station.

Liam got to go on his first field trip this week. He got to go bowling! I heard he had a fabulous time. I would have seen it first hand if I'd gotten my hiney out of the house and over there on time but I got so wrapped up in writing that my morning turned to afternoon before I even looked at the clock. I rushed to school and met them coming back in. His teachers filled me in on what I'd missed.

 Liam is a lefty, whether by nature or necessity we don't know, but apparently becomes a righty when it comes to sports. They said he used his right hand to roll the ball down the frame. He even bowled a strike! They were all so excited for him that they cheered and hollered. But that made him cry because he can only handle mild excitement over his achievements. Too much enthusiasm and he has a break down. Seriously, he will bawl if you cheer for him.

Not one to quit though, he soldiered on and finished up two games with a score of 96 and 112.

He even got a medal.

That's my little dude; having a field trip day to remember.

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16 October 2013

First School Pics

You need to hear this back story.

It's Liam's first picture day for his first year of school. This momma thought it was later on in the week so I didn't have him wearing any cute clothes. He shows up for school wearing his Jack Skellington tee. Like a boss.

When I find out they are doing the pictures I asked them if they could just make sure he's looking at the camera and to take the photo with his neck brace off and arms down. He has enough gear around all the time that not capturing it in the photo would be a bonus.

When they got down to the photographer they told him they would have to do some wrangling and fidgeting and lots of prep to get Liam positioned right with his arms down, head straight, and looking at the camera.  The photographer, apparently a manly type man, had told them he'd seen it all so it was no biggie. He would snap away while they did their job in order to get a good photo.

Here's what he was able to capture.

Look at how thrilled he looks.

All the fuss to get him in a good position, to take the photo, the bright lights, the camera, and all the action was just too much in the end.

A few seconds after this photo was snapped Liam hurled all over the place. This rough and manly photographer who had seen it all and could handle anything bolted.  Liam's teacher and aid were left to try to manage him, his now nasty clothes, and get him out of his chair to clean him up.

It's all good though. Nothing like baptism by vomit. His aid and teacher have officially been brought into the fold. I don't feel so all alone now.

I was super excited to get his pictures back knowing the story behind it. And then I was extremely disappointed when I got them. I can deal with the no smile, but seriously, a photographer that touts he's 'been there, done that' doesn't even have the knowledge to take a photo that doesn't put a glare on Liam's glasses?  And he didn't notice the big buckle hanging in midair by his head from where his bag accidentally got left on his stroller?

I would have thought more of a man who'd 'seen everything'.

Lucky for Liam, he gets a redo. Let's hope the photographer is better prepared.

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What's Wrong with Him?

I don't know if you remember this post I did on the old guy who had to hold his teeth in place to ask me, "What's he have?", but it was the first time I'd essentially been asked by anyone what was wrong with Liam. He took me off guard not only how he asked but also by how he worded the question. I really couldn't get past the stupidity of his question let alone how he asked it.

Today I was holding Liam in the waiting room at his therapy practice when a sweet little boy kept staring at him. I would look at the little boy and he would grin back at me. After several shared smiles he finally gained the nerve to ask me, "What's wrong with him?" 

Liam has so many issues that scream, I'M UNIQUE that it kind of makes me surprised we haven't gotten it before now.

I had prepped in my head for a while now what I would say when that question came up. But wouldn't you know I lost all ability to respond the way I wanted to? So I just smiled back at him and he smiled at me and turned back to the movie playing quietly on the opposite side of the room.

No matter that I didn't answer, this cute little boy was not done with his curiosity. He looked back around to us and smiled again when I caught his eye. He pointed at Liam and asked me again, "What's wrong with him?"

This time I was able to get the words out. Ready to explain, I asked him if he knew how he gets a boo-boo. He nodded his head yes. Then I told him that Liam has a boo-boo too but his is on the inside and you can't see it. I told him it was in his head. I started to go more into what the boo-boo means for Liam specifically, but with his curiosity satiated, he turned back around and glued his eyes to the movie for the remainder of our time in the waiting room.

I actually ended up disappointed that I didn't get to go into further detail to this little boy. I wanted him to ask more questions so I could give more answers. I wanted him to know that it was ok to be curious, that Liam wasn't something to be afraid of. He wasn't something to look past and pretend wasn't there. I wanted him to know that his curiosity was a good thing and that it's the only way people will see special needs kids as equals is if they learn more about them. I wanted him to know what was 'wrong' with Liam.

The natural curiosity of a child is a beautiful thing. It's how we will raise the newest generation to appreciate and value differences in all of God's children. Sowing into kids the worth of each person no matter their abilities will bring about adults who don't stare and ask, "What's he have?".

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03 October 2013

Broken Values

We were talking tonight about value and purpose in people with a disability and I was reminded again how important people with disabilities are to this world. Statistics are showing that in Europe, 92% of babies diagnosed with Down's Syndrome are aborted and by 2030 Denmark will have seen the last baby born with this condition. Can you imagine a world with out disabilities? What are we telling our children? What are we valuing as a people, as a society?  It seems to me that we are beginning to leave a legacy that says you have to be perfect to be here, that unless you are free of a disability you are not valued, not worthy, and not wanted.

But that is just not true.

People with disabilities are wanted. What society looks down on our heavenly Father adores. Those whom society mocked, Jesus touched.  He values them all. In Luke 18, Jesus' disciples rebuked the blind beggar, thinking Jesus had more important, better things to do than to speak with him. However, Jesus stopped and he healed that blind man. He took time out for the lowliest of the low and touched him. What Jesus own friends viewed with dismissal, Jesus lifted up.

Liam's buddy B
Liam's life is full of value. I'm not just saying that because I'm his mom, I'm saying that because I truly believe it. This world is a better place because he exists. Not only is his life valuable, he gives value to others. I have seen the joy he brings to others, all with out saying a word. Liam even has a best friend at school.
While Liam may not know he has a best friend, Liam has brought value to B's life because B values him as a best friend and B brings value to Liam's life because he loves on him unconditionally and with no pretenses. I would say that's a very worthwhile, valuable relationship right there. Both of them, full of worth, and very loved, even in their brokenness.

But most of all, God loves and values Liam very much. In the scriptures God is always on "Team Weak". In the OT God even displays his wrath against anyone taking advantage of widows or orphans by putting them to the sword. He takes it seriously that we should be caring for those less fortunate. In Psalm 82: 3,4 God presses us to defend the weak and fatherless, to maintain the rights of the poor and the oppressed, to rescue the weak and deliver them from the wicked. That sounds to me like a God who cares very much for people with special needs, doesn't it?

In Matthew 25: 34-46 Jesus speaks of the separation of the sheep and the goats. He spoke about giving something to drink to someone thirsty, food to those who hunger, clothes to the needy, etc... He explains that when we do that for the least among us we have done that for him.  It is supposed to be an honor to help those who can't help themselves. God is compassionate and we are to be as well. God created us in his own image, not for us to feel superior to one another or look down on those less fortunate. We are to lift them up, love them, feed and clothe them, and value them because each person has God given worth. We mimic God when we mimic Christ's service to others. And it is in the lowly, the weak, and the disabled that we see purpose beyond ourselves, purpose that brings us closer to Christ and shows us how valuable it is to have a world full of broken disabled people. I wouldn't want a world with out it.

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24 September 2013

A month of changes

God has been so good to us during this season of changes. Liam being in school was always a bad idea when we first considered it and having a team on board that thought he could do it along with the positive changes we saw take place in Liam over the last year brought us to the decision that we should try it.

I am truly ecstatic to see Liam loving it. Liam only goes 3 1/2 hours a day and last week when I picked him up, wheeled him out to the truck, and opened his door, he started crying. He had full on tears with the rumpled up face. Liam pretty much never cries so I asked him if he was upset about leaving school and if he wanted to go back inside. He immediately stopped crying and looked at me. I told him he could have five more minutes and I wheeled him back inside where we surprised everyone by showing back up.

The staff was so happy to hear the story and it makes this momma's heart glad to know that he loves being there as much as he does and they love having him there. To know that your child is loved on by others is such a gift and when dealing with the needs Liam has, it's a special soul that looks past it all and loves on him anyway. Honestly, we have been truly blessed to have a lot of caring people in Liam's life, from church, to friends, to school, Liam's challenges have been overlooked by many an adult and they have loved on him in spite of them.
Math lesson

Circle time around the board for math

Liam's awesome one to one mentor Ronnie. He LOVES her.

I had Liam's annual IEP yesterday and it went really well. I think the goals they have are well thought out and the amount of interaction between therapists looks promising. One of the biggest changes for us is that because of Liam's success in the room and his desire to be there we are increasing his time to 4 hours 15 min a day.  Liam will start his day at 8:45 and end at 1:00.  I am really happy about the increase because when I would pick Liam up at 12:30 he would be in the middle of the math lesson and I always feel bad about having him leave before it's over. I would be taking him out of the circle and interrupting his lesson. It's probably part of the reason he got so upset at me the other day.

Liam's stamped tree
Liam was really proud of this cat mask.  He chose brown ears and the orange for the face and whenever I talk to him about it he just grins his silly grin. His teacher wasn't sure he really wanted brown because everyone else was choosing black but he told her twice that that was what he wanted and I think he's super proud of himself for making his own choices and seeing the results of it. 

Liam is having a great time. He's learning a lot. He's engaged with his teachers, therapists, and peers and he loves being there.  I'm so grateful for the support we are receiving and for the mentor God provided. It's truly been a wonderful season of change.
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14 September 2013

Not my way.

I've been asked before if I have ever been angry at God for taking two of my children from me.  I can honestly answer that with a no.  I have never been angry at God for it. At least I don't think I have been. Have I ever questioned His reasons, doubted what the purpose was, asked how He could think of doing such a thing, spun circles in confusion wondering how I was supposed to deal with the fallout?  I have absolutely asked those questions. For years I have asked those questions and more. But I have never been angry at God for taking them.

I have heard our pastor talk about getting your frustrations out with God. He says it's ok to shout and rail against God because he knows what you are thinking anyway. He knows how you feel so it's ok to vent to him. He already knows when you are mad at him. And in our pastors wise opinion it's ok to shout it out at him because when you are already feeling that way, you might as well say it out loud and get it over with so you can move on.

I've never really been angry though. I have thought about this over the years and wondered if it was just something I didn't have in me. Was I afraid to be mad at God? Was I afraid of his reaction? Was I afraid I wasn't allowed to be angry?

I don't think any of those things are it. I just think I could never get mad at God when I didn't have any thing to do with bringing those babies to creation. I didn't create them, God did. He gave them to me and it was his right to take them away. It's sounds facetious but it's true. He didn't even had to give me the priveledge of being pregnant.  I actually feel lucky that I have been so blessed with being able to get pregnant easily. Some people would unwittingly take that for granted but I personally know women who don't get that privilege and I am grateful to be able to have that experience, even though they ended in such pain and heartache. I am grateful that I know one day I will see my sweet children again.

Do I wish things were different and that I could have my missing babies with me? Absolutely, I do. And do I wish I had never felt the pain of burying my own children? Without a doubt it's the hardest thing I've ever done. No matter how old they are, a parent always wants their children to outlive them. Do I get frustrated with the journey I've been on and continue down? Of course I do. But I don't ever get angry at God for it. My sweet children were all created with value, purpose, and a divine soul. No matter how short their earthly existence, they were here for a reason and they continue to live on now with God. Getting angry at him for taking them, when He created them and whom I will eventually see again, just doesn't seem right to me.

I'm not speaking about this expecting any one else to feel like me. Everyone feels and reacts differently to situations and being angry is a normal human emotion. If you are angry at God over something, there's no shame or harm in that. Let it all out. Tell God what you're thinking. He knows it anyway and you can breath a bit easier knowing you got everything off your chest. Trust me...God can take it. ;)
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01 September 2013

What a week!

Ready to go!
First day of school smiles!

Liam started Kindergarten!

I can't believe it.

I really never thought he would be capable of being in a school setting with the challenges he faces. I know the schools are supposed to help accomodate as best they can but with Liam's severe vomiting coupled with his multiple disabilities, school didn't seem like a good idea, ever. Not only that, I don't enjoy watching other children stare at my son. I'm used to it and I understand why it happens, but I still don't enjoy it. So having him in that environment was not my ideal.

But as Liam grew older and his desire to learn along with our knowledge of his abilities came the realization that maybe being in school would be good for him.  Shawn was not on board as he is felt the way I did; school was just not the best place for a child with so many issues and taunting/teasing about his challenges was not something we as parents want to endure on his behalf. 

At the big meeting at the end of last school year it was determined we would give it a go and Liam would attend for 3 1/2 hours a day, from 9-12:30. 

I was scheduled to stay for 90 minutes the first day but ended up staying the whole time. It worked out well because I was able to show his one-to-one all the fun things he likes to do and I got to know her pretty well.
She's very attentive, loves working with Liam, and will be right there to help him the entire time.

The second day I dropped him off and when I walked away it dawned on me that I had never left Liam like that before. He's been left with family or close family friends before but I've never left him with what are essentially strangers. I've never even been allowed to leave him when he has therapy.

I almost had no idea what to do with myself for the 3 1/2 hours.

The day must have gone fabulous because when I picked Liam up he got mad at me when I went to put him in his care seat. He fought me and arched out of his seat. I couldn't figure out what he was doing and why when it hit me that he might be upset about having to leave school. I told him he would be able to go back again tomorrow and he settle down in the seat.  Next day, he did the same thing when I picked him up. By the end of the week he was adjusting to his schedule and wouldn't get upset when we left.

He finished out his first week a huge success. No vomiting and minimal drooling. Yay!!

Last night, however, he started coughing in the middle of the night and he is now running a fever. It's been a concern of mine about how he would do this school year with the exposure to all the new viruses. He's always been a very healthy guy with only 1 or 2 colds a year. And here we are the first week in and he's already sick. =(

I am really excited for the routine and structure for Liam because it's really going to help him with his skills but if he gets sick a lot it will affect his outcomes.

So here's praying for a healthy, positive, and productive year for this awesome little man!
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14 August 2013

Disability Pass

Did you know that some theme parks, events, zoos, and museums offer discounted passes for being a person with a disability?  You might be wondering why this would be necessary, after all, their body is taking up space at the park just as much as a person with out a disability would. In fact, they might be taking up more space due to a wheelchair, walker, and/or medical equipment. Yet, they get a discount. Seems a bit unfair from the outset, yes? I honestly had never considered what a benefit that could be until we had Liam. Now I get it.

We recently went to the NC Zoo in Asheboro and I called ahead to see if they offered a discounted pass for bringing my child who just so happens to be in a wheelchair. The first person I talked to said they did and she directed me to get more information from another woman who then told me that they didn't. "But," she says, "we have braille placards at the exhibits." 

Well, la-ti-da. 

Braille cards.

How helpful.

Knowing the zoo was handicap accessible we went anyway, even at full price admission, because it was Liam's first time going to the zoo and I figured it would be worth it.


I figured wrong.

Liam thoroughly enjoyed the otter exhibit. Since we could wheel his chair right up to the glass and he could watch the otter dance and play in the water directly in front of him, it turned out to be the highlight of the trip.

However everything else was a joke. Seriously, a laughable joke. The animal exhibits would be too far away to even see the animals, they were at awkward angles from the viewing area so you had to stretch to get a glimpse, or the animals were all asleep, hiding in the grass or in their homes. I walked away knowing why a discount on his admission pass would have been such a big bonus.

  •  Admission prices are high. When you are bringing a child that can't stand to look around obstacles and can't manuever his chair into positions to see anything, the point of the zoo becomes pointless.
  •  Liam is legally blind. Braille cards are of no benefit on an exhibit that doesn't even have an animal present or has an animal so far away that people with no vision issues can barely see. 
  • There was constantly something in the way preventing a child in a wheelchair from being able to see properly. Even the glass enclosed reptile exhibits had fogged, opaque glass that made it hard for me to see in.
  • Liam's wheelchair weighs almost 50lbs. With Liam in it we are close to 100 lbs. Even though the park is handicap accessible, pushing a 100+lb stroller and child loaded with supplies up hills is exhausting. I'm not in great shape but I'm not totally out of shape either and I had to pass the stroller off to my son several times due to the incline of the hills and the weight we were shoving up it.
  • There were few places to relax in the shade. We went on a sunny spring day but Liam got overheated sitting in his black frame chair and there was no where to go to get him out of the sun to cool off.
I'm not trying to be a complainer here. I'm pointing out what wouldn't have been obvious before Liam came along. Even though this is a handicap accessible place, it's not handicap friendly. And there's a big difference between the two. We paid the same admission across the board when my handicapped son couldn't participate, engage in, or see most of the exhibits. And I think that's a shame. They should offer a disability pass.

Caring for a child with multiple disabilities is hard. Getting out of the house and engaging in family-friendly activities is even harder. Not only due to the logistics of his handicaps but due to costs. That's why a discounted pass for Liam would have been helpful. Costs run high when you care for a child with disabilities. Getting to take a family on an outing that is expensive can be very financially limiting and paying for a ticket for a non-participating participant is painful to the pocket. We would be more inclined to make an effort to do outings of that nature with an incentive.

I appreciate all of the companies that offer discounts and services to those with disabilities. Truly grateful. Because they see what most people don't. If you want to get a family of 6, one with major disabilities, into your facility, make it worthwhile for them. Offer them a discount. Offer them special incentives to get them in the door. After all, having a family pay full price for only 5 family members is better than the family not coming at all.  

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26 July 2013

Looking back

It could be seen as petty, but one of the things I miss most about not having a neurotypical kid in Liam is the ability to take his picture.

Of course I can take smiley pictures all day long of him lying on the floor or sitting in his wheelchair. He smiles. A lot. But that's it. We can't go take pretty posed pictures at the park or the railroad track. No fun pictures of him with his siblings in silly poses. No family pictures hanging out at the river or the lake.

Looking at all the family poses repinned on Pinterest gets me melancholy because we can't ever do pictures like that. Liam can't ever pose for a photo.

I miss being able to huddle everyone together and snap a quick picture.

     Liam can't see where the camera is.
     He can't lift his head and hold it up to smile.
     He hits people in close vicinity because his arms fly up all the time which means nicely styled hair and outfits can quickly look wild.
     Sometimes he drools.

I concede that it's a small thing, but still something that isn't typical for us anymore.

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17 July 2013

Who's your tribe?

What happens when you don't fit in specifically anywhere and yet everywhere?  It's a question I pondered with my friend this past week and has had me ruminating over ever since.

Friendships develop and are cultivated over time because of shared memories, experiences, trials, and just a genuine love of and for the other person. Some friendships are forged through tragedies, life altering experiences, health issues, common interests and just for want of companionship. Today women can find any number of groups to belong to online, uniting even the most commonplace to the unequaled. It brings a sense of community and fosters relationships for woman bringing experienced and knowledgeable people who've 'been there, done that' to those who are just now heading down a new path.

People want to find purpose for their struggles. What better way to do that than to mentor others, to comfort others? Afterall, it's biblical.

2nd Corinthians 1:3-5
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the god of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves received from God. 

We want to comfort others.  We desire to share the comfort we have received with those who are hurting. Our exposure needs a purpose. We desire a tribe. It's also a mom thing. Women are designed to nurture and take care of others.

I'm probably not unique in that I could stick myself in any number of group associations. But I'm probably not too common in regards to the types of clubs I could find myself trying to relate to. Wondering where I could share my experiences and where I could mentor others brings me to the question of which one should I choose? Where is my tribe? Where exactly do I fit in?

Unfortunately I could choose any one of these:
  • The Congenital Heart Defect group. My oldest daughter had a severe heart defect at birth resulting in congestive heart failure and open heart surgery before 6 months of age.
  • The miscarriage club
  • The multiple miscarriage club
  • The stillbirth club
  • The twin club
  • The infant death club
  • The twinless twin club
  • The micropreemie club
  • The cerebral palsy club
  • The rarer form of cerebral palsy club
  • The parent of a multiply disabled child club
  • The care-giver of your own parent club
 Which one do I go with? I can't possibly go with them all. There's too many to choose from and I still feel some days that I shouldn't belong to a single one of them.

I believe God has made the choice obvious for me. He has opened the door for me in the area of special needs and continues to walk with me directing me through more doors, veering my life ever in the direction of supporting and encouraging those with special needs. I admit, I am amazed at how clearly he continues to direct my path in this area.

My pastor asked me the other day, "Did you ever think God would be having you do all of this and growing a ministry like this?"

My answer?


No I did not.

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15 July 2013

Love anyway

Something I don't talk about often is that I deal with disabled adults as well. I never imagined I would be working with disabilities at both ends of the age spectrum and in my own family .

My dad has dementia. He got it when he was only 47 and I was 27. It's a very young age to start having problems with remembering your own grandchildren's names and what state they live in. I wish I could say he had some rare condition that caused this to happen, but I can't. Because he did this to himself.

My dad was addicted to alcohol. He had been a functioning alcoholic all of my young life. His parents were alcoholics along with two of his siblings. But drinking a lot never interfered with his ability to work and never prevented him from being my daddy. He was what was considered a functioning alcoholic. He never missed a game and never appeared drunk. In my late teen years my parents divorced and that was when his slippery slope got out of his control.

I lived thousands of miles away from him at the time he started to lose it. I was living in southern California, he was in Missouri. At one point he didn't even have a phone so long periods of time went by without me speaking to him. After Shawn made a trip back to MO for work and checked in on him, he found him in a really bad state and we knew something needed to happen. We just didn't know what. He had brothers and sisters a few hours but no one wanted to help. They said he needed to hit rock bottom and then he would be ready for help. "What if rock bottom is death?" I had asked.  Their answer was that rock bottom was death for some people and that might be what it was for my dad.

I didn't believe that. They just didn't even want to try.

We prayed about the situation. We brought it before our small group and had them pray with us. We knew this was a big deal. We didn't know exactly what was going on and why he was having such a hard time remembering things. We knew that with the issues he was facing, moving him in with us in CA would be life altering for all of us. I had only been living on my own with my husband for 8 years. We still had a young life to live and bringing in a sick parent was not something we wanted to take on lightly. Life for us would never, ever be the same.

So, we prayed for a sign. We needed to be sure.

When I found out he no longer had a job and hadn't for months, when he couldn't recall basic information, and when he told us he kept trying to get a hold of his mom (who had died the year before), we knew it was time.

We packed up our three little ones and drove the thousands of miles to MO to pack him up and move him in with us.

I was so angry at him for doing this to himself. I made him quit alcohol and tobacco cold turkey. I refused to have any of it around my children.

Once we got back to CA we got started right away on the process of discovering what was wrong. It would become clear to the Dr's upon speaking with my dad that things just weren't adding up. And when we finally got the psychological exam it was eye opening to say the least. Everything finally made perfect sense. They diagnosed my dad with Korsakoff's Syndrome. He had given himself dementia from his chronic alcohol abuse. They told us he would be able to get better with a proper diet and no more alcohol, but that he would never be the same.He would never be able to function with a real job again.

And he has never been the same. God has been so faithful to us as we've cared for my dad. It has not been easy. We've certainly had a hard road. It's been tough trying to raise our kids and deal with someone who has dementia. It took us a while to figure out the kids weren't lying, that it was my dad making up stories because he couldn't remember what really happened. They've learned sarcasm from him, something I hate. They've learned to try and get the last word, which I hate. But they've also learned some very valuable life lessons.

They see that you don't have to win an argument. It's ok to not have the last word.

They see first hand what abusing your body can do to you. 

They've learned that God's mercy is granted even to those that seem beyond hope.

They've learned that while you can't pick your family, you can choose to love them anyway even when it's not easy to do, but because it's the right thing to do.

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10 July 2013

Guilt Trip

I thought that being almost 6 years out from Liam's birth the mommy guilt wouldn't be a problem anymore. But, dang if it doesn't just creep in when you least expect it.

I belong to a group on facebook of moms of micropreemies. I had completely forgotten I was a part of this group until recently when facebook changed how posts come across. Now, every person who posts to this micropreemie group gets a front row seat in my feed. I usually ignore them because they are almost 99% of the time stories of  "look at how good my 1 pounder is doing now" types of things and although I am very, very happy these kids are doing so well, it hurts my heart that Liam faces what he does. 

Tonight though, a post came through about how this woman's water had broken at 18 weeks and she was pressured to abort. She fought the Dr's, hung in, and her child is doing fantastic.

Why would that give me guilt?

When I lost my mucous plug at 23 weeks and 6 days, I begged the Dr to put me in the Trendelenburg position to keep Liam and Brady in. The steroids take 24 hours to take affect and I'd only had them for a few hours. I knew they needed more time, but everything I knew was being thrown out the window by this nice, soft spoken Dr who said they needed to be delivered in a safe, prepared environment instead of birthing them spontaneously. He explained that if Liam broke the bag of waters it would be dangerous and they could better survive if they were taken by c-section.

I have mommy guilt because I feel I should have told the Dr no. Now, I know that this is a silly feeling to have because I don't know how things would have gone if I'd said no. But I do know that I might not be feeling guilty today if I had fought back then to give them more time in the womb. And it doesn't help to know other mothers in a very similar situation to mine were given more time and put in Trendelenburg. Liam's life might be more typical, his challenges might be minimal, Brady might be here... The what if's are terrible to go back and think about because I can't change anything that has happened.

That's why I usually don't read them. I can't stand the guilt.

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08 July 2013

You learn to adore the small things...

like not having to go to the GI doctor for another year!


A whole 12 months will pass before Liam has to go for a GI check up.  And do you know why that is?  Because I switched this little man over to REAL food 5 months ago!

I love Dr. Williams. If you are in the Wilmington area or are even within a 2 hour driving range of the Nunnelee Clinic, I highly recommend him. He came in, sat down, and said, "I don't know what you are doing with this blenderized diet, but Liam looks awesome. His growth is fantastic, he is looking great on the charts. I don't need to see you for another year." 


Take a kid with complex needs, multiple doctors and multiple visits per year and you get a very satisfied momma when we get to eliminate one. 

Liam has been on the blenderized diet long enough now that he is regular (first time in over a year) and we don't have to give any meds or suppositories any more. I can't remember the last time he threw up from reflux. And he has gotten huge. He has gained two pounds since we started and he's now 3'8" long. He is getting really awkward to carry around. 

But, if we could just get head control.... 


Not giving up prayer in this area yet though.

Matthew 21:22

01 July 2013


Wow, has it really been a month? We finished up preschool for Liam with a meeting. We met, for the second time, with an AT team from Raleigh. They brought something called a PODD for us to work on communication with Liam. They said they have seen kids that they thought would never be able to use the system end up being able to use it. And they felt right off the bat that Liam would be able to do it. He was definitely interested in it when we worked with him at the meeting. They were prepping staff for using it with him for this next school year when I asked if I could take it home with me over the summer and work with him myself. They thought that was a great idea so I ended up leaving with the entire book.

The system is essentially pictures on each page that can lead you to other pages with more pictures in order to put together thoughts and sentences through pictures. It will force Liam to use his eyes for communication but since his awful eyesight is his strong skill, we are hoping it will help him to be able to visually scan and get his point across. The book consists of a 3 ring binder and 70 laminated pages full of pictures.

It also came with a bracelet that he is supposed to wear at all times. The idea is to teach him to raise his hand when he has something to say but he always raises his arms so we are going to have to come up with something different
for that.

All in all, it's a great idea. It is what we have been doing for years anyway, talking through pictures and having him make choices. Liam is just such a complex kid that the idea of anything working perfectly is a long shot. But that's also my negativity talking. He has blown us away so many times this might just be one of those instances.

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