Baby Dedication/First Birthday Party

Well, it was a long but exciting, fun-filled, special weekend. I am tired and we have a therapy packed day ahead of us. Anyways, I didn't post last week because I was sooo busy getting ready for the party. My house was such a mess because after spending 3 1/2 months at the Cleveland Clinic I kind of let things go downhill. I had a lot of catching up to do. I sent Gwynny to my sitter's house a couple days and to my in-laws one day and that really helped me to get things ready. Anyways, everything went off with pretty much no glitches. The Baby Dedication was soo touching. We had our friends Scott and Kathie read the poems " Welcome to Holland" and "Heaven's Special Child". It was soo moving. As Pastor prayed for Liliana and annointed her little head with oil I realized once again how lucky we are to have been given the opportunity to raise such a wonderful child as her. Many of our family and friends were there in church to celebrate and the speaker that morning was excellent. Everyone came back to our house for the birthday celebration and we had a great time. Lots of good food, good conversation, and just plain fun. Lily never did get to enjoy her birthday cake because by that time she was so tired she feel asleep on her great grandma's lap. I saved her little smash cake for her actual birthday so we can have some fun with that. She got a couple of toys, money, and a gift card. I see shopping in the future! LOL! All in all it was a great time had by all. I will post a link to the pictures since there will be sooo many of them. Now where the story begins...

I can't believe it has been almost a year since we had Liliana. I remember when I went to my OB's office and he told me that they needed to schedule a C-section because the baby was continuing not to grow well in the womb and they needed to take her now. I was about 37 weeks when he told me this. I remember thinking I'm not ready for this baby yet. She wasn't supposed to be born until around June 17th, but God had another plan. A completely different plan in store that I never dreamed I would be living out. She was born on June 6, 2008 and weighed 5 lbs. 10 oz. and was 17 1/4 inches tall. She was the most beautiful baby! The C-section went very well, except for a few problems giving me the spinal that didn't want to go into my messed up spine. Anyways, they cleaned her up and I got to hold her and they wheeled us off to recovery. They then took her and eventually once I was settled into a room the news was broke that they thought she may have Down syndrome and that we needed to take a blood test and wait almost two weeks to get the results back. I was devastated. Why me Lord? What did I do to deserve this? I am not capable of taking care of this child? I don't think I want this child? (Yes, I actually thought that at the beginning), but God has a way of working in us and through us and helps us to see that things are going to be ok and that he is in control. As if finding out that your child has Down syndrome wasn't enough, the following day we were told that she was born with a congenital heart defect that would require surgery between the ages of 4-6 months of age. Oh my gosh! Are you kidding me? I broke down and cried hysterically! After a lot of reflection and whining and crying I decided that the most important thing of all was that my child had to live. The heart issue was much more serious than her having Down syndrome. I decided that I was going to make the best of things and that I was going to accept things and move forward and try to be the best advocate I could possibly be for my child. So, I started to read a bunch of those books about parenting a child with Down syndrome until someone told me not to read it anymore, that it would just make me more emotional and stir up a lot of unwanted emotions that I really didn't need at that time. So I stopped. Instead I sought help from a local group Down syndrome Northeast Ohio and I found that there really are a lot of families out there just like me. They offered advice, support and anything else that I needed and it was perfect timing. You see, that is how God works, in his perfect time. He gives us what we need, when we need it. Liliana then spent 2 1/2 more weeks at Fairview Hospital learning how to suck from a bottle. She came home to lead a somewhat normal life until it was time to prepare ourselves for the open heart surgery she required. Liliana began to go downhill with her bottle feeds and was admitted to Cleveland Clinic Children's Hospital to start her on an NG tube and learn how to feed her this way. We never dreamed that things would come to that but the doctors assured us that she would do so much better with the bottle after she had her heart surgery. So we learned the ropes and feed her in this manner until November 4, 2008 when she went in for her first surgery. What was supposed to be a 7-10 day hospital stay turned into about 101 days if I remember correctly. It seemed like it would never end, but looking back on it now it seems so long ago. Liliana has come soo far! She definitely has a long ways to go but she really has come soo far! I remember sitting in her room day after day just asking God when it would come to an end. I had doubts and fears fill my mind at times and I still do today sometimes. I just knew I had to stay strong for my baby! I had to keep believing! I had to keep on striving to stay positive and every day that I did the Lord blessed me in more ways than you can imagine. If I was having an extremely bad day he would send someone across my path that would give me words of encouragement, or just simply a "hello" or a smile. I took advantage of the free rakki (spelling) massages they gave at the clinic and made a lot of new friends along the way. It was an experience that I will never forget as long as I live. My baby that came sooo close to death was spared by our marvelous creator. The ultimate healer, made my baby's body whole again. For this I am thankful, and for this I will praise the name of the Lord.

God used a lot of people in a lot of ways in our lives. He used our friends Scott and Kathie to minister to us when we felt like no one really cared. Their love and concern definitely made a difference and it helped lead us to the church we now attend. CTK church became a huge support system for us. They had a prayer chain going, they helped us financially, and they gave us food at Thanksgiving and Christmas. They reached out to us with open arms and accepted us willingly. We had several visits and phone calls from Pastor Tom and each and every time he came to visit or call it lifted our spirits and let us know that people really cared. Liliana has no idea how many people were praying for her and how many people love her. She is such a lucky little girl!

So as I look forward to the future. I feel very optimistic. I feel hope. I feel like Liliana really has a chance. She has a support system. She can be whatever she wants to be and the Lord has given me the tools I need to help her succeed. I hope to have many, many more birthdays with Liliana celebrating her successes and celebrating her wonderful, marvelous life!