so, where did I leave off?? Oh yes, Norman had finally made it to the hospital, heard the news of suspected Down syndrome, and rushed away to meet our Beau.....
I really can't give you detailed play by play over the next few days because my memory of this time is very foggy. But I can tell you what I do remember. Crying. Lots of crying. Crying because there was this tiny baby in the NICU that has an unfair disadvantage to life (or so I thought). Crying because the life we planned as a family of five had just taken an unplanned direction. Crying because of my crippling fear that my other 2 children would miss out on life to the fullest because everything our future held would revolve around Down syndrome. I was sad. I was mad. I was scared. I was lost. I cried if anyone looked at me too long. I was grieving and didn't even realize it. Grieving the life that was "supposed to be". Anyone who has experienced grief knows that it is absolutely necessary to begin healing. But in between my cries I knew I had to heal and be strong. I pushed myself to get up and move around.. make it to every visit in the NICU. The nurses told me that NICU mamas always recover from their C-sections more quickly. I believe it!
I would like to pause here to give a shout out to the NICU nurses for just a sec. They are certainly unsung heroes on the big scale, but I can guarantee you that any mama who has had a baby in the NICU will sing to the top of their lungs about the work and dedication these people put into their shifts. Beau had several different nurses in the NICU and all of them were nothing short of amazing. Thank you NICU nurses.
Beau was in the NICU for a few reasons. First, he required some help breathing the first few days. He had an "oxygen hood". He also had a little trouble maintaining blood sugar levels, so he also had an IV to help with that. His IV was in his belly button because they couldn't get a "good stick" anywhere else. Both of these issues resolved themselves within a few days. And just like his brother and sister...he had light therapy for jaundice. Darn that billyrubin! In the big picture this was nothing compared to most of the other babies there with him. This is also not a big deal compared to many other babies with Down syndrome.
So as moms usually do, I reached out. Fortunately I was already familiar with the Down syndrome support group in our area (Triangle Down Syndrome Network) because of a student that I had the previous school year. I sent a message to the group via facebook. The next day not only did I get a response but a visit, welcome bag, and most importantly a new perspective. This angel named Kari came to visit Norman and me. I was still a mess. I could not hold it together when she was there. I WAS A BIG BLUBBERING MESS!!!! She was so gentle and understanding. She assured me that I was reacting exactly like I should be. She went on to ask me what my biggest concerns were.
#1. I am not prepared to do this. I have to get all the help he needs right away. I am his advocate and I need to start NOW...like today.
*Kari's response: Yes, you will be Beau's biggest and fiercest advocate, BUT he is hours old. The most important thing you can do now is love him. And once you are settled at home you will take one step at a time. You will do this and you will do a great job. He found YOU and you don't know just yet how lucky you are!
**My new perspective: OK, I have already loved him for 9 months and that isn't changing so this part will be easy. Loving a wee babe that formed and grew and flipped inside of you is an easy job for me!
#2. My other children. What does this mean for them? What does this change about how their lives will unfold? Will they resent their baby brother? Will they love him?
*Kari's response: I have other children as well, and I remember worrying about the same thing. But wasn't a new baby...another addition ...... going to change everything anyway??
**My new perspective: Hmmmmm....why yes it was. I haven't thought about it that way. Beau was going to bring a whole new world into our home. A baby changes everything! Our family was going to be different no matter what!
#3. What about Beau as an adult? What about when Norman and I are gone? Who will protect, guide, and care for him?
*Kari's response: Yes, these are very valid concerns. Very overwhelming questions. I am still overwhelmed to think about the future. The wonderful thing is that we do not need all the answers today. Once again, we can take one step at at a time to ensure Beau is cared for as long as he needs to be.
**My new perspective: (deep breath) Let's do this. I realize I may not have all the answers now. I realize I will be scared sometimes. I know I will mess up, but I also know I am covered in grace from heaven. I am covered in love and prayers and support on Earth. Norman, Luke, Della Rose, and Beau Bradley are covered as well. I CAN DO THIS. I WILL DO THIS! WE WILL CARRY ON AND LOVE LIFE. BEAU WILL MAKE ME BETTER.
Needless to say by the time Kari left my perspective was completely different. Now, don't get me wrong I am not saying I still didn't cry or get overwhelmed. PLEASE don't think that! But I realized that the same way I (any mother) would worry about her "typical" children I will worry about Beau. The same way a mother will celebrate milestones with her "typical" children, I will celebrate milestones with Beau. The same way a mom will love fiercely on her "typical" children, I will love fiercly on Beau. The only difference is Beau is 1 chromosome up on the world!
I would like to take this opportunity to thank Kari and the Triangle Down Syndrome Network (parent group) for their wonderful support. If you find yourself feeling alone in a situation, find a group to support you! If you cannot find a group, create it! I guarantee that someone else would love to hold your hand or love a hand to hold. We have moved since Beau's birth and I have seen just how amazing the Ds community is. Here are a few groups that I am lucky to be involved with:
Chesapeake Down Syndrome Parent Group
Anne Arundel Down Syndrome Connection
Down Syndrome Diagnosis Network
Peace & Love
I really can't give you detailed play by play over the next few days because my memory of this time is very foggy. But I can tell you what I do remember. Crying. Lots of crying. Crying because there was this tiny baby in the NICU that has an unfair disadvantage to life (or so I thought). Crying because the life we planned as a family of five had just taken an unplanned direction. Crying because of my crippling fear that my other 2 children would miss out on life to the fullest because everything our future held would revolve around Down syndrome. I was sad. I was mad. I was scared. I was lost. I cried if anyone looked at me too long. I was grieving and didn't even realize it. Grieving the life that was "supposed to be". Anyone who has experienced grief knows that it is absolutely necessary to begin healing. But in between my cries I knew I had to heal and be strong. I pushed myself to get up and move around.. make it to every visit in the NICU. The nurses told me that NICU mamas always recover from their C-sections more quickly. I believe it!
I would like to pause here to give a shout out to the NICU nurses for just a sec. They are certainly unsung heroes on the big scale, but I can guarantee you that any mama who has had a baby in the NICU will sing to the top of their lungs about the work and dedication these people put into their shifts. Beau had several different nurses in the NICU and all of them were nothing short of amazing. Thank you NICU nurses.
Beau was in the NICU for a few reasons. First, he required some help breathing the first few days. He had an "oxygen hood". He also had a little trouble maintaining blood sugar levels, so he also had an IV to help with that. His IV was in his belly button because they couldn't get a "good stick" anywhere else. Both of these issues resolved themselves within a few days. And just like his brother and sister...he had light therapy for jaundice. Darn that billyrubin! In the big picture this was nothing compared to most of the other babies there with him. This is also not a big deal compared to many other babies with Down syndrome.
So as moms usually do, I reached out. Fortunately I was already familiar with the Down syndrome support group in our area (Triangle Down Syndrome Network) because of a student that I had the previous school year. I sent a message to the group via facebook. The next day not only did I get a response but a visit, welcome bag, and most importantly a new perspective. This angel named Kari came to visit Norman and me. I was still a mess. I could not hold it together when she was there. I WAS A BIG BLUBBERING MESS!!!! She was so gentle and understanding. She assured me that I was reacting exactly like I should be. She went on to ask me what my biggest concerns were.
#1. I am not prepared to do this. I have to get all the help he needs right away. I am his advocate and I need to start NOW...like today.
*Kari's response: Yes, you will be Beau's biggest and fiercest advocate, BUT he is hours old. The most important thing you can do now is love him. And once you are settled at home you will take one step at a time. You will do this and you will do a great job. He found YOU and you don't know just yet how lucky you are!
**My new perspective: OK, I have already loved him for 9 months and that isn't changing so this part will be easy. Loving a wee babe that formed and grew and flipped inside of you is an easy job for me!
#2. My other children. What does this mean for them? What does this change about how their lives will unfold? Will they resent their baby brother? Will they love him?
*Kari's response: I have other children as well, and I remember worrying about the same thing. But wasn't a new baby...another addition ...... going to change everything anyway??
**My new perspective: Hmmmmm....why yes it was. I haven't thought about it that way. Beau was going to bring a whole new world into our home. A baby changes everything! Our family was going to be different no matter what!
#3. What about Beau as an adult? What about when Norman and I are gone? Who will protect, guide, and care for him?
*Kari's response: Yes, these are very valid concerns. Very overwhelming questions. I am still overwhelmed to think about the future. The wonderful thing is that we do not need all the answers today. Once again, we can take one step at at a time to ensure Beau is cared for as long as he needs to be.
**My new perspective: (deep breath) Let's do this. I realize I may not have all the answers now. I realize I will be scared sometimes. I know I will mess up, but I also know I am covered in grace from heaven. I am covered in love and prayers and support on Earth. Norman, Luke, Della Rose, and Beau Bradley are covered as well. I CAN DO THIS. I WILL DO THIS! WE WILL CARRY ON AND LOVE LIFE. BEAU WILL MAKE ME BETTER.
Needless to say by the time Kari left my perspective was completely different. Now, don't get me wrong I am not saying I still didn't cry or get overwhelmed. PLEASE don't think that! But I realized that the same way I (any mother) would worry about her "typical" children I will worry about Beau. The same way a mother will celebrate milestones with her "typical" children, I will celebrate milestones with Beau. The same way a mom will love fiercely on her "typical" children, I will love fiercly on Beau. The only difference is Beau is 1 chromosome up on the world!
I would like to take this opportunity to thank Kari and the Triangle Down Syndrome Network (parent group) for their wonderful support. If you find yourself feeling alone in a situation, find a group to support you! If you cannot find a group, create it! I guarantee that someone else would love to hold your hand or love a hand to hold. We have moved since Beau's birth and I have seen just how amazing the Ds community is. Here are a few groups that I am lucky to be involved with:
Chesapeake Down Syndrome Parent Group
Anne Arundel Down Syndrome Connection
Down Syndrome Diagnosis Network
Peace & Love
Mahala, I just wrote this big long comment, and somehow it got deleted! It was No accident, I say it was Divine Deletion �� anyway, it was way too wordy etc...
ReplyDeleteI am sitting here with a full heart, and sweet tears because God, through your moms FB post, brought me back to your blog, which I had planned on never reading after your first post, because I am so used to keeping anything good from getting anywhere near my heart. (Wordy Girl again) I am in awe of you. For so many reasons. (Hurry up and put something else up here!! ) some goodness got to my calloused heart, and I cannot explain how good it feels! Thank you, I love you
Aunt Laura