My sweet family just got bigger and cuter. Our World and View of People has just been changed. My first 3 kids just scored a better chance of being more tolerant and compassionate. Awesome.
I was thinking last night... I may have misrepresented my reaction to Si's, at the time, possible diagnosis. Just to be clear. It was a scary time. The possible health problems were freaking me out. All those problems were suggested to us because the nurses had already assumed that Si had Down Syndrome. I didn't want any one to visit me in the hospital because I didn't have a baby to show them! That was miserable and lonely. I HATED that part. I don't think I'd ever felt that lonely before. Sitting in the hospital when I'm suppose to have my new baby boy lying beside me but instead just sitting and looking at the walls. I did let a few close, close friends come. Betsy spent the night with me and brought my favorite foods every night. :) I didn't need physical help, but she helped me. But when it came to actually thinking, "my baby has Down Syndrome"... I was very confused. I looked at him and the only thing I saw was how much he looked like my 2 year old, Seth... and that his little fingers were really short and he had these funky little monkey toes. (the toes are my favorite) I didn't see it otherwise. I had Rob bring in pictures of Seth so I could compare. To see if I could tell a difference in Seth, a "typical" baby and Si. So, I'm embarrassed when I remember talking to the Dr. who delivered Si and telling him that my babies just have almond shaped eyes and my nephew has monkey toes. Both which are true, but I feel like I was in denial. As days went on, all of Si's features began to be more noticeable. By one month, below, he still looks a lot like Lily and Seth, but he also has his "super" features too.
So when I had to deliver the final news about Si to family and friends, it was weird. Everyone had different reactions. Rob was really dreading it, because he thought his mom would cry and that my parents would be upset too. I told him that was ridiculous... I was right, of course. :) My parents started asking questions and dreaming about what he would be like. Of course my mom started "lecturing" me on not being easy on him and I couldn't spoil him or underestimate his abilities. (super abilities) Rob's mom was fine and sent me Noah's website that someone suggested to her.
Friends were different... I had some tell me they were sorry, some already knew, some let out a "ohhh" (oh no) and some had already been researching DS (loved hearing that). Betsy had told her friend, who had adopted a baby with DS, and she told me "Joy is so excited for you! She said Congratulations!" Which was nice but, admittedly, a little weird. This brings me to what I read on some sort of FB post...
A woman with a boy with DS talks about how she loves seeing kids and people with DS because it's like a club. :) This is exactly right. I look forward, so much, to meeting families like mine. I saw a family at Academy last week from our Montgomery Down Syndrome Outreach Group and it was so exciting! I normally only see them 1time a month. Is this wrong? I sometimes wish a pregnant person has a baby with DS... just because it's so exciting. I mean with out health problems! I wouldn't wish that on anyone. But to be able to experience that is more joy than I have ever prayed for. It was nice to read that post and realize that I'm not a crazy person who stalks families with Down Syndrome... or at least there are other crazies out there that go to special lengths to get in "that line" at the grocery store or follow people around so you can trap them in to talking to you about their kid. I'm so glad to be a card carrying member of this Super Club. And I will happily
Congratulate ANY new mom and dad with a baby as sweet as Si who
happens to have Down Syndrome!
Sorry about my lack of writing abilities. I write like I talk... and I'm not a
Lily: I was telling Chapel (school friend) about how Si gives kisses and he told me that 'we need to teach that Si how to kiss
right!' I told him 'Si has Down Syndrome!' He asked me what Down syndrome was! I told him'down syndrome means he was born with an extra thing .... I think it's called a herb.
My baby boy is 15 months old. It's hard to believe. In some ways it seems like time has flown, but in other ways it seems like he has always been with us. I don't remember, and I know my kids can't remember, life with out our Si Guy. Just like 7 years ago, when my girl was born. It seems like a life time ago... did we really only have 1 kid at some point? All I see in this is that they won't be little long. I love that and I hate that. I want so much for them to always depend on me, but I know that that is not the way it works. I have to pray and trust that they will go from dependency on me to dependency of God. That is what I want. I do pray that they do come back too me every so often...but I will try to give them over to Him every time. That's a mother's greatest challenge, I think...to know that they aren't mine...they are His. With each year I see Him working in them more and more. It's beautiful.
I was off of Facebook for a long time... but I want to do all I can to spread awareness for my little guy and all his friends...so I'm on. Like him and keep liking him... post and share to help spread the word! I'll also update the page whenever I have a new post on here! So.... See you there!!!
I know this because.... I prayed for Si. I didn't remember it right away, but as I was watching him this morning.. and when I watch him, I also feel God, so I remembered about 2 years ago.
A friend and I were driving home from somewhere. (I don't recall where) We were talking about other friends and their God given mission for their life. We were wondering where our "mission" was. We were envious (in a good way) of their passions in life. They had a "calling", I guess you might say. God had placed something on their heart or in their life. Anyway, we wanted one. I remember us both deciding to pray for it. I did. I prayed for several weeks. I knew were I had been passionate all my life, but I didn't know how to make it a "calling". I began to want one desperately. One of my closest friends had adopted and I had prayed with her before even starting the first adoption for weeks that her path would lead to adopting. We prayed, with others, that God would put a little girl in her family. He was faithful. He was faithful and second time. She continues in her passion to make adoption a way of life in His Church. I have other friends that are passionate about caring for the grieving. They have lost and are passionate for bringing hope to others.
So, I knew my loves and my passions. I have always had something inside me that has a love for other cultures and races. I believe God put that in me. So, I got involved in the ministries that bring me in contact with my loves. My brother has lived with HIV for many years. I have a desire to bring understanding and a love for people with AIDS. Homosexuality and HIV is something I have been a part of since I was a child and I have a strong desire to show love and hope to people in that area.
So I have not been passionless.... I just have lacked ... well, something... I know, now, it was someone.
Those 2 years ago I prayed and prayed. I was pregnant. I was devastated by the loss of that baby. Even more so than the 2 other losses before. Then I was pregnant again. I didn't pray for this one. I prayed, selfishly, for me. Other's prayed for him. When I finally started praying for him, I was praying out of guilt and fear that God was going to take him from me. I thought something was wrong with him almost the whole time. We had tests done...I called them the old lady tests to make sure he was ok...No health problems associated with trisomy 18, 21 or whatever else. We came out relieved with a positive ultrasound that showed he was good... no health problems. I remember sitting in my friends house and feeling so nervous. I told her that I couldn't shake this feeling that something was wrong. I felt like God was going to punish my baby because of my feelings of not wanting to be pregnant. She assured me that she was pretty sure God did not work that way.
God was working. He had been working and preparing me.
9 years before, Ian's ultrasound had shown a marker for Down Syndrome on his heart. The doctor had told me we could do an amnio to be sure or we could just wait to see if it disappeared in the next ultrasound. I waited. While we waited, we had our Small Group pray for our baby. We prayed that the hole would be gone by the next time and that we would have a perfect, healthy baby boy. I remember Rob and I talking a little about the possibilities. I had told him that I felt like God wanted me to have a baby with Down Syndrome. I didn't know much about it then. I did have this deep feeling about it. By the time the next ultrasound rolled around, the marker was gone and we were pleased, several months later, to have my sweet baby Ian in our arms. :)
The labor and excitement of having this baby, 9 years later, and not being pregnant anymore over took any uneasiness that I had been having all 9 months. He was delivered and they laid him on me. The first thing I saw was his little hand. I squinted and was briefly confused. His hands didn't look like the 3 previous tiny hands that had been laid on my in the very same way. He had short stubby fingers. I said something out loud, but Rob, I think, thought that was a funny thing to notice. Why did that matter? They took him and cleaned him up... but his oxygen level was down. This wasn't unusual for me... Seth was the same way and they had flopped Seth on my skin to skin and his heart and oxygen went right back to normal. God is awesome that way, making mothers
a healing spirit to their babies. But when they put Si back on me, it did not help. They took him and worked on him some more. The doctor, that was on call, not my own... came over to me and put his hand on my arms and I saw him praying over me. I looked an wondered what was wrong. I new something wasn't right... just by... something...I guess you just know after having four babies. The nurses decided to take him to the Nurse practitioner to see what needed to be done to help him. I was without him for hours. When Rob went to find out about him... that's a story he can tell.... he came back to my room and looked as white as a sheet. He was scared but I didn't know why. He told me that the nurse had told him that Si looked as if he had down syndrome, failing kidneys, heart problems, etc... I don't even remember the list. I asked if he would live through the night and she said he was stable but he would need to stay in the NICU.
I went through several thought processes that night. Lots of prayers. Lots of fear. Lots of guilt. All I wanted was God to let me keep this baby that I only was able to hold for about 1 minute. I had really only laid eyes on him for a minute or 2. I prayed for his life. Then the following days, I prayed for Rob and my kids. I knew that I was ready to take on this baby whether the genetic testing said he had Down Syndrome or not. But I wanted Rob to be ready. My worry that I had never considered before was how that would affect the other kids. So what do you do when you need to know something badly??? I Googled it. Search: how will my other kids be affected with a baby with down syndrome? :) :) That was an easy answer. All around, the sites told me that siblings of a baby with Down Syndrome is ... more loving, more accepting, more compassionate, more likely to go into the field of Special Education as adults. PERFECT! I'm good. I just needed God to take care of these health issues and feel like Rob was comfortable with this, and I was good to go.
God answered both of these prayers. He is Faithful. This isn't the only answered prayers.... if you've actually made it through this long-winded post, you'll know he answered FAR more than those last 2 prayers. He has been answering my prayers for 10 years. He had been preparing me for this time in my life for, probably, much much longer than 10 years. My love the persecuted and different, for lack of better words, was all moving me forward toward this Calling. He gave me the passion that I prayed for 2 years ago. It's strong... it made me join a group that made me uncomfortable to begin with, because I lacked understanding... it made me control my competitive nature because Si is going to develop at his own rate... it's made me not shy from people looking at me, but long for it so I can show Si's humanity...it's even made me write these crazy serious and seriously long blog posts. All to say that people with down syndrome are incredibly awesome. Si is going to change many people in his life. He has already done it. I will be watching along beside him. I will help when I can. I will encourage him to tell his story. I will help him to know he is special and different and that God made him this way so he can show people God's power. I will try to help him understand why people stare at him and how to smile and show them Jesus's nature. I will encourage him to talk to people about what Trisomy 21 is and how he is just as valuable in God's Kingdom. I will pray for his every move toward God and in God's plan for him.
So this is what God has given me. It's what I asked for. He not only answered my prayer... He changed my life in the process. My prayer, now, is to not squander this gift and passion. But pray every day to be aware of His Presence and what He wants me to do to show His Passion each day.
I pray that my new passion will show His True Passion.
I've been reading blogs and posts about how they wouldn't "change their baby with down syndrome for anything". I want to agree with that, but it's more than that for me. I have a very active daydreaming imagination. I can think about someone dying and be crying in 10 minutes like it really happened. So as I started imagining Si not having Down Syndrome, I was so sad. It felt like I was being robbed of my future with him. Like all my dreams I have dreamed for him and our future was lost. I have a dream that Si and I will someday own a Toyota Tacoma truck and he and I will drive around town together in this truck that we will both love. I think about teaching him to drive it. When I imagined him not having DS.... well, that would be crazy. He wouldn't want to hang out with me and spend time riding around in a dumb truck with his mom. That's just one of things I see in our future. I dream about what God will do with Si's life... of how He will use him to change people to change His world. I have these dreams about all my kids, but I love how with Si, I can count on being a big part of it. I'll have this front row seat to it.
I know parents go through a "mourning" for the child that he dreamed of, when they find out about a DS diagnosis. I must have done the same thing to some extent, but I wish I could convey how incredible it is to have had this unexpected awesomeness thrown our way. So now, I have this reverse "mourning" for a child I'm so thankful I don't have. That's cheesy, right? But it's also truth. Like I've written before.... I thank God, literally, every time I pick Si up.
I know these little people feel the same way.
What would we do if we weren't teaching this little guy how to crawl, hug and say "more".
