Special Needs

Since I've worked with the special needs population for the past 13 years it obviously holds a tender place in my heart.  I love the children I work with and genuinely enjoy my job.  But since Lincoln had special needs, and I got to experience that life from an entirely different perspective- a mother's perspective- I have an even greater love for these amazingly sweet and special spirits.

I don't often see children who remind me of Lincoln.  Jezelle has a quick eye to point out every single child with red hair that we pass by in the grocery store or at the mall, and although it makes my heart hurt too, when I see those sweet little red heads, it's a small reminder in comparison to other, and larger, reminders that make my heart lurch up into my throat.  I rarely see kids who move like Lincoln did, or sound like he did.  He was one heck of a unique little guy.  And I wondered if being around children with special needs would be hard, after he passed away, but it's not because of how unique his special needs were.

However, every once in a while a child does come into the clinic who, for whatever reason, reminds me of Lincoln, or more so, how I imagine he would look at the age of 5 or at the age of 8.  This happened while I was at work yesterday.  I went out into the lobby and there was a little boy who was standing there with his mom and my heart skipped a beat.  He was probably about 6 years old and was just learning how to walk.  He was unstable but sure was working hard at doing it!  He had orthotics on his feet just like Lincoln did, and had very low muscle tone.  And for a moment I had a very clear picture of what Lincoln would have looked like at the age of 6.  And although those moments are few and far between, when they happen they hurt.  And I have to resist going over and picking up the child and letting them melt into my shoulder with their floppiness (because that would be weird if a stranger came over and just picked your kid up to hug them . . . ).  And I have to be careful not to stare.  That would be weird too.

As I watched this sweet little boy's mom yesterday I wondered how she felt to have this little boy and although I don't doubt that she loves him to pieces, I also had to resist walking over to her and whispering in her ear, "You are so so lucky to have your son with you right now.  Just trust me.  You are so lucky".

Christmas

Tomorrow is Christmas.  I didn't get to buy any presents for Lincoln this year and cried my way through wrapping gifts, as there wasn't one there to wrap for my baby boy.  I hate seeing his stocking hanging there, empty, and I HATE that Jezelle is like an only child again.  Getting Santa pictures taken just about killed me.  I literally wanted to throw a temper tantrum right there in the mall.  It broke my heart to see Jezelle sitting up on Santa's lap alone, like she's an only child.  Except she's not, her sibling is just NOT here.  No siblings to take turns with on Christmas morning or to share in the excitement with.  Needless to say this Christmas isn't like others.  We are just getting through it.  I didn't think it would be this hard.  I thought it would be like any other day; hard and we miss him and I think of him at least every minute.  But this is HARD and it physically  hurts so badly.  And yet, at the same time we must make it fun and exciting for our child who is still alive.  But she's feeling the sadness too.  I was reminded of this every time I asked her what she wanted for Christmas, and in all seriousness, she would answer, "Lincoln".  Me too sweetheart.  Me too.

Unfortunately I don't have a lot of pictures of Lincoln from last Christmas.  He was still asleep when Jezelle started unwrapping her presents and somehow the moment got away from me and I don't have hardly any pictures of Christmas morning.  It makes me really sad.  What else is new?!

 Here is Linc on Christmas morning last year, with his sissy and cousins.

And this is from the year before.  Sooo cute!

9 months

It's strange how time passes and the grief doesn't lessen.  And yet as you continue to live your life, you realize things that never occurred to you before.  Such as, many of my friend's who had children around the same time that Lincoln was born, will be turning 3 years old this year, and my child won't.  He'll just always be two.  And this holiday season it's easy to still find pictures of all the grandchildren to make gifts with, and yet in the future we won't ever have a picture of all the grandchildren to give to my parents because Lincoln won't be in them.  And how weird would it be to give my parents a picture of Jezelle at the age of 5, when she is now 15.  Maybe that doesn't even make sense.  The whole picture thing really bothers me.  I will eventually run out of pictures to use on this blog.  We only have so many pictures.  Time continues to just be such a strange concept when it comes to grief and the loss of a child.  This picture was taken last Christmas.  He looked so cute in his Christmas outfit.  My heart breaks each time I see clothes that I totally would have bought for him.

But on a lighter note this holiday season, we continue to count our blessings of joy.  Such as this little 6 year old who dances in the Target isles while Christmas shopping because why not?

Thanksgiving

I miss Lincoln every minute of every day and holidays are just as hard, if not harder.  Pictures are taken, traditions are done, and memories are made.  All the while without my son in my arms.  I really missed my little turkey this Thanksgiving.  Cutest darn turkey I've ever seen in my life!!!

And this picture was taken last Thanksgiving.

What I would have said . . .

I feel very lucky that I have no regrets when it comes to Lincoln.  We loved him more then words can describe.  Pretty much every day of his life Shane and I would look at each other and one of us would say, "Isn't he the cutest kid you've ever seen?" or "they don't come any cuter than this" and we really believe that!  I'd come home from work and kiss him until I laid him down in his crib.  I'd tell him "I missed you all day long!!" and I really did when I was away from him.

But, as I look back on his two years on earth I sometimes wish I had handled myself differently at times.  I wish I had not worried so much and just enjoyed the good and the hard times all the same.  I wish I KNEW what I know now, but such is life!  The video below made me cry.  It's a bunch of parents with children who have special needs.  They are sharing messages to themselves on the day they found out their child's diagnosis.

When I saw this video I knew exactly what I would have told myself.  I would have said, 'It's going to be ok!  Don't worry so much.  Enjoy every second with him, because he won't be here long'  And then I remember that a tiny voice inside my head was telling me those things all along.  And that's when I want to scream and beg to bring him back.  I'd trade places right now with any parent who has a child with special needs.  I'd give anything to be part of that amazing community again and hold my head up high when I tell others how proud I am of my son with special needs.

I always have a hard time when I go to special events to support the special needs community that I ironically work in.  I went to one of those today.  It was a luncheon honoring the amazing people in our community who work with children with special needs.  There were a few parents who spoke and although I've sat in those fund raising events for 12 years, I get it now.  I understand the love these parents have for their children and feel sooooo envious that they are still experiencing that life and I am not.  Tomorrow it will be 8 months since Lincoln passed away.  Our life has changed so much in the past 8 months.  And although life seemed stressful and busy when Lincoln was in our lives it's ironically so much more stressful without him here.

His name is finally up at the cemetery.  Every time I drive up to that place I have an out-of-body experience.  I want to pinch myself and wake up for this nightmare.  Who is this driving up to the cemetery to visit their son's grave?  It can't be me!!!

 The pinwheels that were left there at his funeral are still there!

Seeing his name up seems so real.  So permanent.  

My boys!  

(My sister found this cute picture the other day.  It was taken on Christmas last year.  It melts my heart and breaks my heart, all at the same time.)

Halloween

Another holiday, another heart ache.

Holidays are hard without Lincoln.  Yesterday was Halloween.  I missed him.  A lot.  My arms felt so empty as we took our 6 year old daughter out trick-or-treating around our neighborhood.  I kept thinking how I should be carrying him and how much he loved being outside.  It was hard not to think of last Halloween and how cute he was in his octopus costume.

Since this year our daughter chose to be Merida, from the movie Brave, I couldn't help but think how perfect Lincoln would have been as one of Merida's younger triplet brother's.  Oh how cute he would have been and oh how perfect he would have played the part.

.....see the resemblance?

It would have been perfect....

7 months

Tomorrow marks 7 months without our sweet boy. Oh how I miss him. I miss him so much I sometimes think my heart might physically break. Actually I think it already has.

After Lincoln passed away we received an incredibly generous and thoughtful gift certificate in the mail from a bunch of my collage sorority sisters. There was a gift certificate for airline tickets and an incredibly generous Marriott gift card as well. Holy cow!! Shane and I were overwhelmed by their thoughtfulness and generosity. Many people encouraged us to get away, go on a trip and forget about life. But Shane and I both felt that before we did that we first needed to learn how to live our 'normal' life without him in it. We felt like if we were to go on a vacation right away we would just be avoiding our problems rather then facing reality. And so we planned a trip to Maui that we could look forward to! And it came at the perfect time. We just got back from spending 6 amazing and perfect days in paradise. A much needed vacation.

And although the thought crossed my mind more then once that really the reason we were here was because our Lincoln had passed away, I was also able to see how much we had changed since his death and from his death. And although its still very difficult to see that anything good has,
or really ever will come from his death, in the beauty of where we were, I suddenly realized that if nothing else, I have come to see how precious life truly is. We went to Maui, a place I went as a child with my family. I hadn't been back to that island in 10 years and definitely saw it through a different set of eyes. We were in paradise. We were in one of the most beautiful places in the world! And yet all around me I heard people complaining about little things. Silly things that didn't and shouldn't matter anywhere in life, but certainly not while basking in the sun, on the beaches of Hawaii. And I suddenly realized how much I now know just how precious life is. And how much I try so hard to just appreciate each day and the little things. Live in the moment. Spend time with those you love most! And just enjoy life!!!

Our flight home from Hawaii was cancelled this afternoon, which in turn created a hole lot of unhappy people. And though I'll admit I was unhappy as well, I also had to remember that we need to be grateful to be alive and grateful that we are safe. I teach social skill classes to children with special needs and one thing we work hard on, when dealing with problem solving and conflict resolution is small problem versus big problem. If it's a small problem, and one you can solve then its not that big of a deal. People need to just chill out!!!!

While hanging out at the pool we met the sweetest family who had a beautiful little girl who ironically has a chromosome abnormality on chromosome 1. We visited with the family for quite awhile and although I walked away missing my little one with a chromosome abnormality, I found joy in visiting with another family who also enjoys every day. Their daughter wasn't expected to live past the age of 2 and now she's 2 years old and learning to smile and sit up. Her sweet dad said they are just thankful for every day that she's alive. Sometimes little moments like that remind me that Lincoln is very much still in our lives and watching over us. And how grateful I am to be his mom. Below is an amazing talk given by a man who lost his son. It is eye opening to those who are maybe wondering when we will 'get over this' or 'feel better'. The answer is never:
http://www.lds.org/general-conference/watch/2012/10?lang=eng&vid=1882755269001&cid=9