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

The Year in Review continued

June

Disney World

July


August

September
Annika's first day of Preschool

Annika started playing soccer

October

Jackson started school

Leaf fun

Halloween

November

December

Happy 3rd Birthday Jackson!

Happy 3rd Birthday Jackson!

We love you so much and you bring so much joy to our lives!

Trust

We have some exciting news! We are expecting baby #3 in late April! All of us are very excited about this. Annika really wants a baby sister. Eric and I really do not have a preference and Jackson is pretty much clueless about what we are talking about. Above all these requests is a prayer for health. How our prespective has changed over the years. We no longer take the health of a baby for granted and pray fervently and fervently for this. With this announcement comes some questions.

First, what are the chances that this baby will have M-CM? The answer is not likely. The actual cause of M-CM is unknown, but it is believed to be a random mutation of the genes. Currently there are no reported cases of a family having two children with M-CM.

Second, are we anxious? Not really. Months ago we worked through the possibility of having another child. We thought about the fact that a future child may not have M-CM, but there are thousands of other syndromes out there and really it is amazing how many kids are born completely healthy. This is where trust comes in. I had to ask myself some questions and do some soul searching. Do I still trust God? Do I trust Him again? What if God gave us another baby with a disability? And how would I respond? The conclusion that I came to drove my fears away. I do trust God and I know that all of His ways are perfect.

Proverbs 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your paths."

Psalm 112 :7 "He will have no fear of bad news; his heart is steadfast, trusting in the Lord."

II Samuel 22:31 "As for God, his way is perfect, the word of the Lord is flawless. He is a shield for all who take refuge in him."

Thanks for thinking and praying alongside us.

Jackson's first day of school!

Today Jackson started school at Brown School Elementary in the ECDD room (Early Childhood Developmentally Delayed). We have been trying to get Jackson into Brown School, which is located in St Joseph, instead of sending him to Niles (which is about 20 minutes away). Finally, we got him in after agreeing to start him now instead of waiting until after his third birthday in December since they do not like to take kids during the middle of the school year.

Jackson did great on his first day and I was greeted with a big smile when I came to pick him up, although he was beat and slept for 4 hours this afternoon. I was a little apprehensive and just kept wondering if I really was doing the right thing. He just seems so little and ever since he has been born I feel like I have been trying to protect him and keep him healthy and safe, so for me it was a little difficult to send him off to school. However, now that the first day is behind us I am sure that it will get easier. Eric and I are really proud of Jackson and all of the accomplishments that he has made.

All ready for his first day

Annika's first day of preschool

Annika started preschool today at Christ Lutheran School. I cannot believe how fast my little girl is growing up.

Days of Summer

Our days of summer have been filled with ice cream, play dates, parks, swimming lessons, vacation Bible school, therapy, the kiddie pool, slide and slide, bikes, practicing our walker, and snuggling. I cannot believe that summer is almost over and Annika will start preschool. Here are a few pictures of the faces we love so much.

Hollywood Studios and Animal Kingdom

I promise I am almost done with my Disney pictures. Below are some pictures from our time spent at Hollywood Studios and Animal Kingdom

Waiting for Muffets 3-D to start

Annika in line to see Woody and Buzz

Annika and Eric at the Bone Yard playground at Animal Kingdom

Jackson and Grandpa