Friday, February 20, 2009

Hard days are rewarded by smiles

In all honesty...

I've actually been dealing with Marissa's diagnosis very well. We didn't find out until the day she was born that she has Down Syndrome. Well, they told us they suspected it and then we found out for certain about 4 weeks later. The next day we found out she had a VSD and would probably require surgery. It turns out that she did need surgery, which she just had about 3 weeks ago. Now we are home and settling in and I find myself being uncertain. Well not all the time, just today seems to have presented an array of emotions...talk about a roller coaster.

I love Marissa with all my heart, more than I could have imagined, but there seems to be a heaviness in my heart for her and for us. I am angry at myself for having this sadness. Is that normal? I continue to try to understand this great plan that God has for us. I continue to pray for peace during this time. At present, I am unable to comprehend his plan or find the peace that he offers. I wonder, will I ever?

Another parent of a child with Down Syndrome reminded me of a verse Jeremiah 29:11-13, "I know the plans I have for you, saith the Lord, plans for peace and not for evil, to give you a future and a hope." Today is one of those days that I wish I knew what that plan was.

Wednesday, February 11, 2009

Settling In

I feel like we are finally beginning to settle into the new house. All the storage boxes have been unpacked. The office looks like a war zone, but I will get it sorted in the next couple of days. We haven't received our main shipment. It was scheduled to arrive yesterday, but of course it didn't. Sooner or later we will have a bed and sofa. Friends of ours loaned us their air mattress which has been such a blessing that we don't have to sleep on the floor.

Marissa is doing alright these days. She certainly misses all of her visitors though. She's taking a nap right now and looking very comfy and sweet.

I swear you wouldn't even know that she just had surgery. I put together her Pottery Barn cubbies today. She hung out with me in the playroom and just watched. It was very sweet how alert she was.

I also scheduled early intervention to come out. They will be here on March 5. A social worker and physical therapist will be coming out to do the evaluation.

Friday, February 6, 2009

Traveling

Although it was only a 10 hour drive, it was the longest ride yet. The anticipation of arriving at our new home was killing me. We finally arrived and the house is beautiful! Even though I woke up and started unpacking boxes and organizing, it still doesn't look like I touched a thing. Bradley and I went and picked out our blinds from Lowes which he will pick up tomorrow.

Marissa had a fussy day. She had lots of inconsolable tears which was just heartbreaking. We loaded her up with Tylenol and just hope she feels better tomorrow.

Sunday, February 1, 2009

The Master Plan

So we were supposed to be in Japan at this point but due to Marissa's diagnosis of Down Syndrome and her heart defect we weren't able to go. As Marissa needed heart surgery, the Army didn't have the facilities to do the surgery and follow-up care for Marissa, so we were detoured for a bit. We've been in Cleveland since mid-August, early September. All of our household items and unaccompanied goods were already sent overseas and some other items were placed in storage in Georgia. After all this, the Army is sending us to N. Carolina. We've made a couple trips down there and wound up buying a house!

Since she had her surgery and is recovering quite well, we are preparing to make our move to N. Carolina. Bradley is leaving tomorrow and will be staying down there to sign for our items and to start work in about a week. Marissa and I are going to hang back until after Marissa's follow up appointments. She has her initial follow-up on February 5 and the next one is March 2. I'm just not comfortable traveling such a long distance with her.

I'm quite excited about getting all of our things back. So many people gave us all sorts of beautiful things for Marissa and she hasn't been able to use any of it. Marissa's crib should arrive before come down there so Bradley will have her room and bad all set up to welcome her home. I can't wait!

Home Sweet Home


We are back at home and loving it! Although Marissa had a fantastic day the day we were released from the hospital, the following day was a little more difficult for her. She woke up with lots of tears and frustration partly because she's taking 4 different medications just in the morning. She was fussy throughout the day, but was able to sleep a good portion of the time as well.

She's back to sleeping peacefully throughout the night and we are starting to establish a new routine with all these meds that she is taking. Many people told us that the surgery would be more difficult on us than it would be on her and, boy were they right! She's already bounced back and is surprising us with her new self. She is eating better, crying louder, and chatting more. I simply love it!