Food obsession

As an infant Walker spit up a lot, I don't just mean a little bit like mother's exagerate, I mean a  lot!  He was breast fed and my third, so I knew it wasn't normal, but just kept feeding him 24 hours a day... seriously... then when we stared him on solid foods that didn't seem to help either. Finally the doctors listened to me and he was diagnosed with reflux.  Around that same time he was labled "failure to thrieve".  Nothing brings on the mommy guilt more than a child who isn't eating or gaining weight. Since then I have been obsessed with what Walker eats, how much he drinks and what calaories he takes in. 

These last few days however, he hasn't been eating very much.  I don't know if he is sick of the same old, same old, but it seems all he wants to eat are cheerios!! The poor guy must be sick of me shoving spoonfuls of more nutritional things in his face every five minutes. but I am so worried that he is hungry and can't tell me.

I know I need to relax, if it was another child and mother, i would say... "he will eat when he is hungry" so why can't I just let him be? Is it a way for him to exert some independence? He is after all, two!

I think as mothers we just want to make sure our children are well fed, that it is a symbol of our love to feed, so I am going to leave him be and head off to put dinner in the oven instead!

Sunday Breakfast

Sundays are "family day" since my husband and I own our own business, its hard to get anytime together without including work.  I have made a point to tell my husband that Sunday is our day.. and we have continued a tradition of getting breakfast as a family.  Where we used to live was a corner deli that we frequented often.  Since we moved, we have been returning there for Sunday breakfast, we know the owner, the guests and it is comfortable.  They also all know Walker. This morning however, we ventured to a cafe that is closer to my husbands family's house.  We had to go over there to get a load of wood on the truck (work never ends) and thought that we would just get breakfast over there.  Now, even though this is where my husband grew up, I could tell he was nervous about taking Walker into the Cafe. Actually we both were.  We never really know what may set him off and this was a new environment with new faces.

Walker did very well, he was happy to sit on daddy's lap and look at the new surroundings.  Breakfast was delicious and even Sawyer enjoyed the new faces!  As an older woman was leaving she stopped by our table and commented on how cute our children were.  She then asked if they were twins.  Yes, twins. We get this a lot, even though its clear that Walker is bigger than Sawyer and older, I think its peoples way of trying to figure out what is wrong with Walker.  He doesn't do all the things a typical 2 year old would do.  He can't sit in a hair chair, he doesn't eat anything off the menu and he doesn't say a word.  We politily smile and explain that they are actually 21 months apart but Walker is delayed.  They in turn, smile polity and leave.  If they ask more questions, we don't mind but its hard explaining about Walker since we don't really know either!  Instead we find ourselves explaining by telling people all the things he can't do. 

"He's delayed, which means he can't sit up, he doesn't crawl, he doesn't speak or eat table food....." Then we get the "oh, I'm sorry,,,, or oh, how sad....." response.  Then we find it necessary to add "but he's a happy boy" (which I've blogged about before here) 

I was thinking as we left the cafe and headed to the wood lot that I need to start explaining Walker by all the things he can do, or likes. 

"He's delayed, but he rolls over both ways, he loves vibrations and toys that light up, he laughs when you tickle his arm and makes great dragon noises.  He loves the sunlight and riding in daddy's diesel truck!"

This is my lesson from Walker today... be happy in the simplicity and remember the positive!

Around the world

Yesterday was a great day but an exhausting one.  By the time I laid my head down last night, I felt like I had been on a global excursion dragging both Sawyer and Walker with me.  In the morning we headed over for a play date, which was being hosted by a friend of mine whom I met while Walker was a baby, back when I mistakenly believed that we were all Italians.  As our children grew (they are all roughly the same age) and Walker's citizenship in Italy was revoked, we began to drift apart.  Its not these mom's faults, they are caring and loving people,its just hard to keep up when their children are running and playing on the playground and we are sitting on the side lines.  So more and more, I found myself declining to participate in their play dates and excursions because it was just to painful.  Yesterday, however, was a good day, and since Walker has been feeling better and I have a bad case of cabin fever, we accepted the invitation.  The play date went well, it was more a social catch up for me than a play date for Walker but everyone had a nice time.  Italy really is a beautiful place.

In the evening I got to have a mommy date with an amazing mom who happens to have a daughter with Downs Syndrome. I enjoy this woman's company and knowledge of so many different things, she is a huge resource for me in regards to Early Intervention for Walker.  On my ride home I had this feeling that I couldn't quite put my finger on.  It wasn't a bad feeling, just something that was gnawing at me.  As I tried to go to sleep I realized that even in Holland, I am just a visitor.  It seems that there are different territories in Holland and Walker and I get to visit them but none are really home. We travel around visiting DS, Autism, CP and other territories but we only have a one day pass.  My community here does not have any type of support system for those of us that float around Holland, those of us who know we belong in Holland but cant seem to gain citizenship in any one territory.  It's not something that people deny me to, it's something that I do to myself. It plays on my insecurities and can be very lonely. I am not sure exactly what I am looking for, or even where I am going to find it, but I do know that I can't stay tucked away in the safety of our home, which just further isolates all of us. Instead I need to find a way to make our own community. 

Welcome to Holland

In order for you to understand my next few posts, I needed to re-print the poem below.  It is something that those of us with Special Needs children know all to well, and those that don't can enjoy too.

 

 

"Welcome to Holland"

By Emily Perl Kingsley, 1987.  

 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

One Foot, Two foot... red foot, blue foot

Sawyer is getting bigger and bigger each day, and the milestones that she is making are incredible.  It is so easy to compare Walker and her as they play on the floor together.  It is also easy to forget that Walker is 21 months older than her.  But it is exciting to see some of the same things happening.  Walker has recently discovered his feet! This may seem like a little thing, but he never really paid any attention to his own body.  He loves his feet to be tickled and massaged and I have always told him, he could do it himself.  Now he is!!

Detox

Awhile back I took Walker to see a Homeopath to help with his reflux and constipation issues.  She was great in assisting us with changing his diet This made a tremendous improvement in how he feels day to day.  After receiving his last Hep A shot he began having his "episodes" again so i took him back to see her.  She recommended I put him back on the natural detox that should rid his system of mercury and any other heavy metals that are in his system.  I had stopped doing it the first time around because it was really difficult with the diet changes as well.  So today we started the detox again, and will keep it up for two weeks.  I am interested to see if there will be any changes! I have faith! The "episodes" also stopped that day!!  Not sure how it works, but it does!!!

New start

I decided that I needed a separate blog for my thoughts concerning Walker. Maybe its part of my healing, but I didn't want my whole blog universe to be set just on his disabilities.  I am, after all, a mother of three other children, a wife and much much more.  But its true that each day and every minute is guided by Walker is some way or another.  Life with a child who has special needs has to be.  Is it fair? Who is to judge that? It is just what is.  I am so very thankful for the world of blogging which has put me in touch with so many wonderful families. The community is empowering.

It may be hormones but I found myself teary eyed this morning when I realized that many of the blogs are read are so postiive, they are filled with the love and optimsim that I feel my blogs are often missing.  It made me reflect on how Walker has affected my life, and I realize that it is his life that is teaching me who I  trully am.

These are Lessons from Walker.