I don't know how to start this one out. I have been putting it off, because this is the hardest thing to write, but today at church we had guest speaker Dan Kulp, he is so inspiring and I hope I will inspire people like he does.
Finally Sunday had rolled around, I was so excited at the possibility of getting out of this hospital bed and seeing and holding my baby girl! Oh how I longed just to touch her button nose, to hold her tiny hand to let her know that momma was here and she would be ok! I got out of bed, got to shower and sat in my hospital bed trying to look as perky as I could, I wanted out of there!! I tried not to get to excited because I didn't want to get let down. I remember my mom, dad and little sister Claudia , and Michaels dad were up with Landry. Michaels mom, Sister Christie, Brother Ryan, my sister Loretta, Zach, my brother Loyal, and also Michaels cousin Jesse were all there with me. Michael was up with Landry too. We waited and waited while I watched some of the release videos. Finally Doctor Delacruz came in and released me, before he left he said, "now are you sure your ready to leave?" with a grin. Boy was I ever ready! I called Michael and told him I was released and he headed down right away.
While on the way up Loyal was with Michael and I, I looked back and Loyal was crying I didn't know at the time why but I thought it was because of Landry being preemie and at Akron Children's. But little did I know he knew about Landry's extra chromosome. When we arrived at Akron Children's everyone was waiting at the entrance for us. At the entrance I got my wristband so that I could freely go back and forth to see Landry. Michael proudly wheeled me back a hallway, through double doors we passed two rooms then he turned into the third room, all the way in the back I saw her. She was so tiny and fragile looking but the cutest thing I ever saw. Getting to hold her finally was everything I ever imagined but better. She had her little lamb hat on that I had sent up with Michael. However as I was holding her I thought she looked like she had downs syndrome just a tiny bit. I brushed it off and we went back to the waiting room with our family. When I saw my mom I remember with tears I asked her if she thought she looked like she had something, and mom looked at me and all she said was, " Twila she is so cute." Right then I knew. I had a feeling when I was pregnant and even in the hospital at Union I felt like she might have Downs Syndrome but I asked Michael and he said no. That evening my closest friends were there and I was such an emotional wreck that I didn't get to talk with them. Michael went and got supper for me, but I had no appetite all I could think about was Landry.
We told our family we were going back to see her again, when we got back there I remember I was holding her when a doctor walked up to us, and sat down. He said he wanted to talk about you know her having downs syndrome. I remember thinking knowing?! what are you crazy I didn't know, but then I discovered Michael had been informed, as well as my family. he continued rambling, the things he said were cold and hurtful to me, from then on I kept my distance from him. I kept thinking, man you must not have a heart how can you be a children's doctor. After learning my precious little girl had Downs Syndrome, I kept thinking why us God? I am not a good enough mom, or experienced enough to take care of such a special little girl. What about all the dreams Michael and I had for this little girl, I always wanted a little ballerina or gymnast. Michael dreamed about one day coaching her softball team, will she be able to do all these things. After these thoughts I guess you could say I went into survival mode, thinking YES my little girl will do these things, if her little heart desired this I will make it happen! I will not hold her back from doing these things, she is just like any other person she just has something extra that makes her extra special to us. My next thought was, Michael knew all this time why didn't he tell me? I asked him and he proceeded to tell me how a kind doctor had explained everything to him in such a nice way that morning, he said these children are the most loving and kindest children there are, and they are pretty special. 1 in 2000 couples our age have a baby like this. He also advised Michael not to tell me, he said that would make it so much harder for me while I was in the hospital, but Michael told him Doc, Twila isn't that dumb, for all we know she probably already suspects something is up. He was right, I did but I kept those thoughts out of my head until I got up there. To be honest when I was a teenager I remember telling my mom that I feel I will have a child someday that will have something special about them. I understood why Michael kept it from me. We gathered with our parents in the waiting room tears all around, both of our dads prayed for us, that God would guide us through this time, and help us with raising Landry. I remember before going to bed that night I got a text from a great and wise friend it helped me and made me feel so much better that night, she is so special to me and inspires me, when I feel down or need to talk I text her, it meant the world to me getting a text from her everyday.
A great couple, and friends of Michael and I came up to see us, we told them about the condition Landry has, they were thrilled for us in a good way, they didn't tell us they were sorry for us, Michael and I didn't want people to feel sorry for us at all. Landry is not a disappointment but a gift from God. They told us as life goes on some people will say things in a way that could be hurtful, but we should know that they didn't think about how it would sound. That has helped me through the past couple months, some people do say things and I know they really didn't mean it the way it sounded. But then there are some that do say things and mean it. God has shown me also how to keep calm and stay kind during those times. We know that it was nothing Michael or I did for Landry to have this, it happened when Landry was conceived that she received an extra chromosome, it was not because of her birth, or because the cord was wrapped so tight, or even because I didn't complain enough. Another dear friend of mine told me that she was actually jealous of me when she found out that Landry had DS because she always wanted to adopt a little DS child, they even checked into it and the list is so high they gave it up for now. We feel honored that God felt we are able to raise this precious little girl. She is so special to us. Michael and I decided to raise her as if she never even had this, to us she is the same as if she didn't have it. We want to show people that this is not a disability she can do great things just like any other child. I cant even begin to explain how much we love her, she means so much to us, and to think how close we lost her she is just that much more special. Michael is the best daddy in the world. :) Some days are still hard but I think of all the friends, and family we have surrounding us they accept Landry just the way she is. Our church family is very special to us. One of my best friends, she came to the hospital so much and meant the world to us, she gave a poem to Michaels mom that I just absolutely love, it explains everything so well. I will close with it.
“Welcome to Holland” by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.
“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
Love to all,
Twila
