The laugh

Lincoln has the cutest laugh in the whole world . . . says his mother. It's actually really funny and he snorts a lot. It's contagious. When you hear it you can't help but laugh. Jezelle lives to make her brother laugh. If she finds something that makes him laugh she will do it over and over again until he has the hiccups from laughing so hard. Below is just one example. For some reason on this particular night Lincoln thought it was so funny to watch Jezelle brush her teeth.

One Big KISS!!!!!!

There is a local radio station here called 106.1 KISS FM. Since I graduated from college and moved home I have been listening to their morning talk show hosts- Jackie and Bender. Every spring they do a radiothon to raise money for Seattle Children's hospital. They call it "One big KISS for the kids". It's usually a 2 or 3 day event and they play really sad (and some happy) stories about children who are sick and have basically grown up living at Children's. They talk about what an incredible hospital it is and all the amazing things they do there! Basically the radio station does a really good job at tugging at your heart strings so that you'll want to donate money. .

. . you know the drill.

Well, this year their radiothon has a whole new meaning to me. I've always looked forward to listening to the stories, as I volunteered there in high school and did an internship in college. I have always known how blessed we were to have such an incredible hospital so close by and have witnessed first hand how amazing their facility is. But now, I REALLY know, because they have taken care of my son. My gratitude to the hospital has grown ten fold in this past year and I feel so incredibly blessed for the wonderful staff there, who have helped us get through these past 11 1/2 trying months and have quite frankly helped Lincoln survive.

Children's philosophy is that they will never turn anyone away. Hence why they rely so heavily on fundraisers. I feel so blessed to have insurance which has covered much of Lincoln's incredibly expensive hospital and doctor visits. However, in January we suddenly found out that the formula and some of his medical supplies which he has received for the past 11 months will not be covered by insurance. And quite honestly it's a bill that made me cry. And so with the advice from the financial aid office, we applied for financial help through the hospital and they have taken care of a significant portion of our bill. Although we still owe a substantial portion, some of it has been taken from us. And so again, the meaning of this fundraiser becomes even more significant to our family. It hits close to home because we are able to benefit from those incredible fundraisers and generous donations that people give.

So, now after my own sad story, if you feel like donating go here:http://kissfmseattle.com/pages/events.html?feed=332448&article=8031312

The small and simple things . . .

We pretty much appreciate and relish in most every single little milestone that Lincoln meets. The latest: riding in the grocery cart and sitting up in the tub (Jezelle is in heaven!)!

and ohhhh how this kid loves his big sissy!



Jezelle loves going grocery shopping with me. I on the other hand do not like going grocery shopping with Jezelle. But, the other day this tiny shopping cart was our saving grace. Thank you Trader Joes.

The funny things that Jezelle has said lately:

- every week after church she marches into our Bishop's office (like she owns the place) and politely asks for candy. The day after New Years, before he gave her candy he asked her if she had earned any money in 2010. She pondered for a moment and then said, "No, I just earned stickers." Good enough.

-at a restaurant the other night when the waitress asked if we wanted drinks Jezelle said, "Um yeah- I'll have a diet coke." Uhhhh no you won't!

-She says "oose" instead of "use". So, sometimes she will ask me if she can "oose one of my purses". I love it.

-Lately she often asks for makeup before she leaves for school so I 'pretend' to put on some blush, lip gloss, etc. The other day as we were rushing out the door, she said, "oh no! Mom, I forgot to put on any makeup."

She cracks us up all day long.

A Novel

Shane was playing with Lincoln on his belly a few weeks ago and somehow Lincoln slipped to the side of Shane and hurt his leg. At first we thought it just scared him because Shane grabbed him quickly so he wouldn't hit the floor. But then he started visibly shaking and screaming and we could not do anything to calm him down. After two hours of this we decided we should take him into the doctor. He screamed the entire time the doctor looked at him too, so of course they ordered x-rays. As if we needed one more problem added to the list. The x-rays did not show anything but they put him in a hard splint anyway. We soon realized that it wasn't his leg anyway, it was his hip, and we took off the splint. But don't worry- not before taking a picture of it!!! The ironic thing was, we had just been to the doctor's office the day before (and three other times that week!) because Lincoln has had such a terrible cold on and off for 6 weeks now. The doctor finally ordered a chest x-ray (which also turned out ok) so that occurred on Friday and when we showed back up on Saturday for x-rays you should have seen the technicians face. I spared her the confusion and said, "yes- we were here yesterday and we are back again today." For the next few days if we moved Lincoln wrong he would scream!! And this kid hardly ever even cries so it was the saddest thing to hear this cry of pain. We finally took him to an orthopedic doctor, to make sure he was ok. When the nurse called us back she said, "Wow! This kid's chart is a novel." Yup. That's our boy. Shane responded with, "we wish it wasn't."

While waiting for the doctor to see us, Shane and I started counting the number of specialists that Lincoln has had the "privilege" of seeing throughout the past 11 months. Here's the list:

• Gastroenterology
• Genetics
• Craniofacial
• Neurodevelopmental
• Neurology
• Cardiology
• Audiology
• Surgeon (regarding the cyst on his head)
• Orthopedics
• ENT (ears, nose, throat)
• SLP (for swallow studies)
• PT (feeding therapy and physical therapy)
• OT (for occupational therapy and sensory therapy)
• and of course the pediatrician (about every two weeks at least!)

Now for the list of procedures which he has had done:

• 3 video fluroscopic swallow studies
• 1 upper GI study
• 1 MRI
• 1 electrocardiogram (EKG)
• about a million trillion x-rays to view placement of his ND and NG tube (seriously too many to count, nor do I even want to know)
• 2 chest x-rays
• 1 leg and hip x-ray
• 1 CT scan

In a report I read last week it read:

"He presents as a child with a medical history including: failure to thrive; dysphagia; gastroesophageal reflux; developmental delay; mildly dysmorphic features; two chromosome abnormalities of uncertain clinical significance; recent ear infections. Please refer to medical records for additional information."

And that's the thing. The above is not all of it. There's more! And when I read these reports it makes me sad, overwhelmed, anxious and very worried. But yet, I must stop and remind myself of the lessons that Lincoln, an 11 month old boy, is teaching me. Despite the fact that he has therapy three times a week and usually at least one doctor appointment somewhere in the mix as well, he remains happy, positive, and full of life. He continues to be motivated, and works oh so hard each and every day. And he lights up our life. And as Shane keeps reminding me, he is probably not here so that we can teach him, he is the one teaching us, and allowing us to serve him.

I heard a question on Oprah last week, about whether or not people who have children are more happy than those who do not have children. The "expert" kind of laughed off the answer by saying parents are more happy when their children turn 18, and when I heard that I wanted to scream, "you are missing the point!!!!!!!" Children bless our lives by giving us, as their parents, the opportunity to give ourselves fully and completely selflessly to another human being. They are allowing us to know what it's like to give service, to think about others, and to love unconditionally. And that, in my eyes, is a very happy thing.

People often ask me "how is Lincoln doing," and although I know they mean well I sometimes don't know how to answer. "Uh, well aside from 3 therapy sessions this week and 4 doctor appointments, plus one x-ray he's doing really well." When a friend of mine asked me last week, "so, what are some of the new things that Lincoln is doing lately?" I realized that was a great question which I could answer. And so once again, Lincoln teaches me yet another lesson in life. Lesson #1893: I want to try to be more conscious of the questions I ask other people so the questions have more meaning and I am able to learn more about that person and what is really going on in their life.

More and more every day I believe that Lincoln was born into our family for a reason, and for a purpose. Although I often forget that and feel sad at times, I try so hard to focus on the positive, just as Lincoln does. I have my good days, and my bad days. I found a blog last week that read on the top of it: "who knew life could be so perfect living a path that wasn't planned". I'm not sure I'd quite describe our life as perfect, but I do know there is a purpose, and for that I feel blessed.

9 months old

Lincoln is 9 months old today! And we love him to death.

(at the doctor's office last week.)

I could probably sit and list off every single thing that he is NOT doing at 9 months that he should be doing and that I worry about every minute of the day. But, instead I'm going to tell you all the things that he IS doing: He's sitting up, almostrolling over, holding his bottle, grabbing his toes, holding on to toys better and starting to hold himself up in the crawling position. He's motivating and determined to MOVE and go, which is a gift that he has been given. Oh what a gift that we are so grateful for. He's determined and works SO hard at everything he does. He is smiling and laughing and melting people's hearts. And he sure does inspire us to do better. He babbles and has started blowing rasberries (which is really fun to clean up when he decides to do it with food in his mouth). Oh, and he loves chewing Gumby's head off! We love you Linc.

And another photo shoot

Just realized I never posted these, but here are some pictures that Tysha Carter, owner of http://littleredwagonphotography.com/ took of Jezelle (4 years) and Lincoln (6 months). They weren't very cooperative that day but we at least got a few good ones. Tysha sure worked hard!

Confessions of a Sad-o-holic!

(I often wish I kept a journal but I just don't these days. And so this sometimes is just going to have to be where I put down my thoughts.)

As strange and twisted as this may sound, I have always sort of enjoyed reading books, watching movies and now following blogs that are kind of sad and depressing. I know. Weird. When I was in high school I loved reading books about teenagers who were struggling with addictions, or illnesses, or about Special Education teachers who had intriguing yet very challenging students on their caseload. My mom would come into my room and I'd be crying, while reading a sad book. And now I love watching the show Intervention, and I'll admit, I kind of like following people's blogs that seem to have a more difficult life than me, or who are struggling with issues that seem worse than what I'm dealing with. There. I said it. However, through reading these blogs, watching sad movies and reading depressing books, I guess I kind of find myself grateful for my trials, my struggles and my situations. And although one may argue I have it worse than them right now, there seems to always be someone worse off than me, in my eyes. I guess that's why we have to always put our faith in God and realize that He is the one who knows what we can handle and what we cannot; and why we are all given such different trials throughout our lives. And sometimes that's a reminder that I need lately. I need a reminder that I'm not the only one with struggles and trials in life. And so I read people's blogs that seem more sad than mine. I know, strange.

I am definitely going through a grieving process right now, regarding Lincoln's developmental delays, and diagnosis. I am beginning to realize that this is not going away any time soon. There is not a quick fix and Lincoln will most likely have many years of therapy, and doctor appointments, and school team meetings. And somehow I got signed up as his 'case manager' for all of this, without my permission or acceptance. Yet through all of my anger and sadness right now, I try hard to see the blessing that have come from this trial, through our sweet, sweet boy. I try hard. Some days are better than others. Some days my life seems worse off than others. Some days I feel like this cannot be happening to ME. And yet it is, and it does. And so I try to recognize the blessings.

One huge blessing and strength to me in my husband. Throughout the past 8 months I have said to him numerous times, "I wish I could be more like you!" because through all of this, Shane is the one who has remained the rock. He is the one who has had the faith, who has been an incredible example of unconditional love and who feels it will all be ok. He is the one who continually reminds me that no matter what happens with Lincoln, or how he progresses that we will not love him any less. And so why should anything else matter?

People say the dumbest things sometimes, and although I realize it is done with ignorance and they mean well it can be so annoying. And that's when I feel the angry rise inside of me. An anger I have never felt before now. I have developed a serious temper as of late. And then there are those who I am continually surprised by, because their words, questions and advise are so very eloquently stated. And then I feel calm. And I hope I can be like them some day when I come across someone who is going through a difficult situation. I was talking to a dear friend of mine recently about Lincoln and she got tears in her eyes and said she just didn't know what to say or how to act. And I told her, just like that! And so I found the perfect advice on one of my "sad blogs":

"When you have the urge to speak, listen. When you feel like your job is to point out the good news, wait. When you have the need to wrap up our experience, please don’t. For real, loving care is the willingness to sit with someone and remain with them in their pain. To hear their fears and sorrow. To say with your actions, “I don’t have all the answers, but I’m sorry. And I am here.” '

Well said. Sometimes I want to scream when all I do is think about Lincoln and his development and I wonder why no one else is talking about it. But then, I kind of don't want to talk about it at all.

And then sometimes my anger comes from the fact that I can't seem to just accept this situation for what it is, and I wonder why not when others, like my dear husband, have. And I look at Shane and I wonder again why I can't be more like him. Why I can't seem to see the blessing every day, every hour, every minute. And I read upbeat blogs, to remind me of these blessing I have been given, about mothers who feel so privileged and lucky to have a child with disabilities and I wonder why I don't feel like them. I don't feel special or important and I certainly don't feel privileged or lucky. And then again Shane reminds me that they too have their bad days. They just might not blog about them (I'm not convinced). And he says it's ok to not always feel lucky to have the trials we've been given. And tells me everything will be ok. And I lean heavily on that. On him. And on his faith.

So with that said, and onto a brighter note- onto those blessing that I do like to remind myself of, this Lincoln kid is one little angel! He melts people's hearts where ever we go! At first I thought people were just being nice. But then I realized that his sweetness and peaceful demeanor is contagious and people just can't get enough of him. It can't even really be described in words but everyone who holds him can feel it. He really is an angel on earth. And people are drawn to him.

And what amazes me most about this little guy is that he knows way more than we all know!! And he is the one who has accepted this life and these trials. And, then I think to myself, "thank goodness he was born into our family, and not in a village in African, where he probably would have starved to death from lack of nutrition, and where he would NOT be getting the therapy that he needs." Thank goodness. And those are the moments where I feel lucky. And oh so blessed.

And I think his cousin Eli knows it too because holy cow, Eli adores him! They were for sure bestest friends in heaven, before coming here to earth. And that I do know for sure. And I do feel very lucky to know that. And to be Lincoln's mommy.