Update

I have been neglecting my blog recently and have been busy getting ready for baby #3 to arrive. So here is a little update of what we have been up to recently.

First of all we really enjoyed our unseasonably warm weather. Even the slip and slide came out one day. I got a little too excited and washed all the winter coats and put them away only to have to take them out again this past week.

On March 22 Annika turned 5 years old!

She got some play princess makeup that she loves to make a mess with,

but she thinks that she looks beautiful.

She also got a new bike since her Dora bike was much too small. Now she flies around the block and I can barely keep up.

She had a princess birthday party with family.

Jackson has started climbing up on everything.

His favorite thing to do lately is to climb onto the kitchen table and get whatever I put on it. I probably should make him get off, but I am so happy that he is actually able to do this that I just laugh.

We also went to the Healthworks Children's Museum during spring break and he kept stealing the grocery carts from other kids so that he could push them around.

Now we are just waiting for baby to arrive any day now.

Rare Disease Day

Today is Rare Disease Day. This picture of Jackson was sent in to be part of the Global Genes Project which is an effort to bring awareness to the healthcare challenges facing over 350 million people affected by rare diseases worldwide. All of the pictures are being presented to legislatures in Washington D.C.

To check out all of the pictures click on www.facebook.com/globalgenesproject and wear jeans today in support of rare disease day.

It seems like just yesterday...

that Annika got her first tooth.

Today she lost it!

I cannot believe how fast she is growing up. She is SO excited for the tooth fairy to come!

2 years ago

Wow! Two posts in one day! Actually, I just remembered that today it has been two years since Jackson had decompression (brain) surgery. I will always remember January 4 for this reason since it was such a anticipated and scary day. Jackson has come so far since then. Another reason to be thankful.

Neuro appointment

Just yesterday I wrote about choosing joy and today was one of those days that I really needed to remind myself to do just that. We had a follow-up neurology appointment this morning to go over Jackson's most recent EEG.

I honestly thought that this EEG would come back normal since Jackson had an EEG in March which came back normal, but recently we started seeing a neurologist at Children's Memorial in South Bend and she wanted a repeat EEG. Jackson has had a few episodes that appear to be seizure-like in the last 9 months. About 3 times Jackson has spaced out for a few seconds and then becomes lethargic and will sleep for about the next three hours. I did feel that Jackson was having a small seizure during these times, but really felt that the EEG would be normal once again. However, the EEG did show seizure activity on the left side of his brain. Since it is only occuring on one side of the brain it is called a partial seizure and we do need to start him on anti-seizure medication for it.

I honestly was so sad to hear this and just thought, "Why God, do you really need to give us something else to worry about?" I hate the thought of trying to find the right medication for Jackson that will not make him lethargic or alter his personality. I was SO hoping that we would not need to put him on medication, but now I know that we need to. So tomorrow, as long as Jackson labs come back normal, we will be starting him on anti-seizure medication. Pray that he has few to no side effects and that we will be able to find the right medication for him.

As we were leaving the doctors office I told Jackson to say goodbye to the doctor and he blew her a kiss. That melted my heart. I am so thankful for my sweet little guy and I will not let this get me down. So once again I will choose joy and be extremely thankful for the gift of Jackson!

Thankfulness and Joy

Isn't it true that we always want what we don't have or what we used to have. There are many things that I have never thought to be thankful for until my eyes were open. The miracle of a healthy baby, the ability to use my legs, modern medicine and the list goes on. You don't need to have a child with special needs to relate to this aspect of human nature of course. Haven't we all wanted a newer car, a better cellphone, a better job? Haven't we all wished for something we once had- the "good old days", the loved one who is gone, or summertime?

This year, as challenging as it is, I am trying to be content with what I have now. Not things I wish I had or things I used to have. I don't want my joy to be dependent on things that were not given to me.

It is painful every time that I see Jackson linger behind in his walker while other kids run past, it is painful to watch him not be able to perform a simple task, it's painful to worry about his future. But the greatest pain I feel comes when I find myself wishing and wanting things for him that simply are not for us. There are days when I feel bitter of Jackson always having to be the underdog. There are days when everything just seems unfair. Those days are painful, but also self-inflicted. Choosing joy means choosing to see the gifts that have been given. And Jackson is very gifted.

Jackson's life has given me so much joy. Although Jackson life meant new fears and territories for me, God has also given me gifts that I could never have imagined. Choosing joy in our family means that we will never let the gifts that weren't given overshadow the abundant ones God has given us today.

The Year in Review in Pictures

January

Daddy is already trying to make us U of M fans

February

March

Happy 4th Birthday Annika!

April

May