I feel like I need to state a disclaimer before I start writing. While most of my posts are primarily about Down syndrome, this one is no different. However, our journey with Down syndrome includes many medical issues. I know that not all children with Down syndrome have the medical issues that Lydia has encountered, but our journey includes that. I wanted to point that out before I started writing. I do realize this is not every one's journey with Down syndrome, but our journey includes all of the medical issues God has blessed her with.
The Holiday season is upon us and things are in full swing. I have a hard time with the Holidays because of my perspective. The reason why we celebrate Christmas is because of a baby lying in a manger; He was born as my Savior and yours. He is the true reason for the season.
Having spent many Holidays in the hospital with a sick child, gives you an entirely different perspective on the Holiday, their meanings, and life in general. I really can't put into words what that means or looks like, but I have it on my heart today to try to explain my perspective on the Holidays and what I have learned.
I remember very vividly two years ago Thanksgiving. While we tried very hard to celebrate as normal, having one of your children confined to a bed with tubes and wires coming out all over is not normal. Having two children full of energy running here and there in a small 9x9 hospital room adds to the frustration of being in this situation.
We tried to teach our girls about giving. Nurses and doctors and all other kinds of staff report to work just as it was any other day. They spend their day trying to make a special Holiday for families that are spending their day there too. We had the girls cook a Thanksgiving meal for the nurses and doctors and staff. It was really fun. They made handmade crafts and gave them out to the staff, and were really excited about giving to others.
However, reality struck once again as a cardiologist entered the room to discuss Lydia's upcoming (in three days) heart surgery. There is no rest in the hospital. People are sick and sick does not know what a Holiday is. People are serving others 365 days a year. People are forgoing their celebrations to create memories for others.
But in that moment, as hard as it was, there was something special too. A family came together. I remember playing Cootie on the floor with the girls, I remember the girls climbing up on the chair and holding their sister, singing to her, and praying about how thankful they were for their new baby sister. I remember feeling a sense of closeness and embracing those moments that were now our new memories of our baby's first Thanksgiving. That's the same thing we would have done at home. I realized that home really is where the family is.
While the "family" members that I thought would be present may have looked a little different, we still were able to make memories. I was not with my mom and my sisters and my dad. Instead I had a group of nurses who had grown to love my child as their own. They had witnessed her in some of her worse days, and they had been there to partake in many family firsts. They had been part of some of the most intimate memories; the first time a child latches to her mother's breast. They were family and they still are. They are part of Lydia's journey and they played an important role. It does seem fitting that they were there to celebrate Lydia's first Thanksgiving. Just a different group of people I had envisioned in my mind.
Walking back to the Ronald McDonald House, leaving part of me behind. I felt guilty and angry. Why did I have to leave her? Why did she have to lay in that crib and not be part of her family? Walking into the front doors and seeing a smiling face. Seeing groups of people who "gave up" their Holiday to serve other people like us. People who were facing all different kinds of battles, who also could not be with their family as they envisioned. My heart was filled to think that someone would care enough about others to serve them and not partake in their own celebration, but to celebrate with me and my broken family. My heart was full once again.
And Lydia, she was getting all of the attention that she needed from the nurses there. They were busy holding her and making sure she had just what she needed until mommy came back for her. She was not alone, she was with family too. Different, but not bad.
I remember Christmas too. My family went out of their way to make it special for us. Lydia still laid in a hospital bed recovering from open heart surgery. She had a whole new family for this Holiday. While many of her other nurses checked in on her, she had a whole new group to impress and wow! Not being there with the other girls as they celebrated Christmas with Eric's parents broke my heart. Not being able to leave the hospital room to go buy presents for my children was so heat breaking. Having a divided family was starting to divide my spirits.
However, I quickly realized that it is not about the presents at all. My girls were thrilled to be at grandma and grandpas, knowing mom and dad were with Lydia. See they were much wiser for their age than they needed to be. They learned lessons far beyond their age and handled it with grace and beauty. They amazed me and inspired me. These are things that will shape the rest of their life. They had to grow up quicker in some ways, but they actually understood the importance of the Holiday; being with the ones they loved.
I remember sitting in the hospital room and the girls had gotten Gyro bowls for Christmas. The director of the Cardiac unit was in our room. She said she still had to go shopping for her niece and was wondering if those worked. Our nurse Kathy always spoiled the girls and she had put ice cream in the bowls. Allison proved how well they worked. She held the one side of the bowl as she turned it upside down and ice cream covered the floor. We all laughed and laughed. It was moments like these that we realized just how blessed we were. We were a family making memories. They may not have been the memories we envisioned, but they were memories that will forever be part of our journey.
I remember opening the door to our room at the Ronald McDonald House and seeing bags of toys for my children. I sobbed because it was more than the presents. It was the fact that other people took time to think about a family like ours and donated a toy. It was a love sacrifice for someone to arrange that bag, thinking of our girls, and picking out the toys. The toys had no significance, but the love and sacrifice that went into making that bag will always be etched in my heart. I can't really describe that feeling, but I can't think about that moment without crying. To see my children's faces was a moment I needed. As much as they had grown up, they didn't. They were kids embracing the circumstance head on, smile on their face, and joy in their hearts. They were excited to take Lydia's toys over to her as well.
Christmas Eve two years ago was spent in a hotel room. My family had traveled hours with a precooked meal and loads of presents. They had prepared a special family gathering in a very unique situation. I remember amidst the mounds of paper and presents I found my way to the bathroom and sobbed. Part of me was missing. My baby was not taking part in that moment, I did not have a memory with her on that first Christmas Eve. She was laying in a hospital room and her family was celebrating and carrying on. That's when Ellen came in and just hugged me and said it would be alright mom. We will make a memory with this family and then go back and make our memory with Lydia. What an amazing little girl that God blessed me with. She was embracing our circumstance and making the very best of it; she was teaching me.
On Christmas day two years ago, we split as a family once again. Our girls were being treated to several days in the Wisconsin Dells. We were getting trained on taking care of Lydia. We were preparing to bring our baby home. She had spent almost the first six months of her life in a hospital, and we were bringing her home. The BEST present EVER! Two short days after Christmas, two years ago, we brought our baby home for the first time. Once again, words cannot describe that feeling. I cry as I look at the picture of me walking out of the hospital, pushing my daughter with no nurse or doctor looking over us. Freedom at last, she was healed well enough to see the inside of her home for the very first time.
So my Holiday perspective is torn. I believe in giving, serving others, and spending time with the folks that God puts in our lives. Family sometimes is not blood related, but those who care enough to show you love. I believe in making memories and having the very important things surround you. Celebrating, singing carols, going to church, attending concerts, sharing Christ's love, giving and serving to those who need it.
I know most people get bogged down by the hustle and bustle of the season. Most people's perspective is so worn and off. Why do you send Christmas cards? I send them because as I am addressing them I am praying for each person, the family, and giving thanks that they are part of our lives. I am sending them because I pray I am blessing them in a way as I am blessed when I receive a Christmas card. I am sending them because I want to share my family with others. I am not doing it because it is one more check on my checklist. To me this is what Christmas is all about.
I don't make cookies with my girls anymore to just check it off the list. I make cookies to make memories. This is something that we missed out on two years ago. And now I have another girl to teach this tradition to. I make cookies so I can teach math to my girls, and teach them how to cook. We love to make memories and my girls ask to do this. It is not a checklist thing to me. We also give our cookies away as a practice to give and serve others. It is so fun to hear the kids ask to want to give the cookies, "mom, shouldn't we give them a goodie basket?" It melts my heart. This is what my Holiday perspective is.
We take in Christmas concerts and spend hours driving around looking at lights, because this is what memories are made out of. We spend time singing and making homemade presents that will be cherished for years to come. We pick out or make a special ornament every year so we can reminisce in the years to come about the memories we made. We pick out special gifts for our family and friends. We don't do it on a check list, but we give from the heart.
I think one thing that our Thanksgiving and Christmas in the hospital did was change why and how I do things. I think about the moment I found out about Lydia having Down syndrome. It is different, just like celebrating a Holiday in the hospital. But everything has purpose and meaning now. The perspective has changed me as a person. It is nothing that I expected, but I am so so blessed to have Lydia and to have had this journey. The unexpected is a blessing like no other, it will change you and teach you. The best "things" are the unexpected.