Theodore will be 3 in November, and he has never been away from Brian and I for more than a few hours outside of our work day. It was weird last night waking in the middle of the night and looking at his monitor and realizing it wasn't on. Along with not rushing out of bed this morning to warm his sippy cup of milk and get him to snuggle for a few minutes before the day began. These two days have been a blessing, but not one I need to repeat monthly Nana :-). They have allowed Brian and I to get some much needed house projects done along with allowing us to talk and talk a lot. After a work day and getting your son to bed a serious conversation with your spouse at 8:30/9:00pm isn't the way I want to end my evenings regularly.
I joined a group on FB, Trisomy 13 Life - Living with Patau Syndrome.The group's administrator sent me examples of Birth Plans that have been written by families with a child with Trisomy 13. I began writing Oscar's, and it was hard. It makes it all to real seeing your child's name on a sheet of paper that is going to go to multiple hospital staff stating information like, "Please resuscitate whenever needed. We have never and will never sign or agree to a DNR." or "We will not sign or agree to “Allow natural death” (AND) for Oscar, please mark his file accordingly as we DO NOT want to be asked over and over." As a parent I hope you never have to write a document like that.
Another thing that is on my mind is death. Dying to me isn't scary because I know I am going to heaven, but leaving my husband and children behind is. Brian and I currently don't have a will and as a parent you think about your children a lot! Brian and I talked this weekend too of what would happen to Oscar and Theodore if we died. Taking on a typical child in the case of a family member's death is hard, but then taking on a child with significant disabilities and medical needs it seems like more than Brian and I could ever ask someone in our family to do. Fortunately, Brian and I are blessed with two sets of parents that said they would take both our son's in a heartbeat, so B and I can check that one off our list.
I have been humbled this weekend as well, even now, only being 24 weeks pregnant presented with the challenge of making other people feel okay or not awkward about our son. At first, I thought, why is it my responsibility to make other people feel okay about my kid and his diagnosis? Why do I need to make others feel comfortable around my family? The Lord humbled my heart and spoke to me and just sorta said Oscar's your son. It is your role/job as a parent to educate others and allow individuals like Oscar to have a voice, a place, and a connection with others in this world. Wouldn't you do whatever you could to make Oscar's life easier? I know your hurting and it doesn't feel right for you to go out of your way to make others feel comfortable with your son's story or diagnosis, but not everyone is given the blessing to have a child and an even greater blessing a child with disabilities. So going forward...I am going to do my best to not take things like that personal and be an advocate for my son. I have always thought, I advocated for my students in my classroom as an MI teacher and did what was right for them, but when you take that role as a parent it has a whole new meaning to be your own child's voice.
We have some big appointments this week. Wednesday, our day will begin, at 8:30am at the MFM office at Toledo Hospital with finishing Oscar's anatomy ultrasound along with getting more detailed images of his Dandy Walker Malformation in his brain and meeting with the MFM specialist. From there, we will head to see the Pediatric Cardiologist and do some more ultrasounds/echocardiogram and consults with her and hopefully finish our day around 2:30-3:00pm. Then on Thursday, we will meet my new OB since my old one was not in Paramount network and we are just trying to simplify things where we can. We will plan to update next weekend with the findings from our appointments on Wednesday.
Final things with joining the FB group, Trisomy 13 Life - Living with Patau Syndrome I came across a survey that was completed into 2007 of families that had a child with Trisomy 13. Here are the Results at a Glance. I think they are pretty exciting and give us hope for Oscar's life outside of the womb.
I joined a group on FB, Trisomy 13 Life - Living with Patau Syndrome.The group's administrator sent me examples of Birth Plans that have been written by families with a child with Trisomy 13. I began writing Oscar's, and it was hard. It makes it all to real seeing your child's name on a sheet of paper that is going to go to multiple hospital staff stating information like, "Please resuscitate whenever needed. We have never and will never sign or agree to a DNR." or "We will not sign or agree to “Allow natural death” (AND) for Oscar, please mark his file accordingly as we DO NOT want to be asked over and over." As a parent I hope you never have to write a document like that.
Another thing that is on my mind is death. Dying to me isn't scary because I know I am going to heaven, but leaving my husband and children behind is. Brian and I currently don't have a will and as a parent you think about your children a lot! Brian and I talked this weekend too of what would happen to Oscar and Theodore if we died. Taking on a typical child in the case of a family member's death is hard, but then taking on a child with significant disabilities and medical needs it seems like more than Brian and I could ever ask someone in our family to do. Fortunately, Brian and I are blessed with two sets of parents that said they would take both our son's in a heartbeat, so B and I can check that one off our list.
I have been humbled this weekend as well, even now, only being 24 weeks pregnant presented with the challenge of making other people feel okay or not awkward about our son. At first, I thought, why is it my responsibility to make other people feel okay about my kid and his diagnosis? Why do I need to make others feel comfortable around my family? The Lord humbled my heart and spoke to me and just sorta said Oscar's your son. It is your role/job as a parent to educate others and allow individuals like Oscar to have a voice, a place, and a connection with others in this world. Wouldn't you do whatever you could to make Oscar's life easier? I know your hurting and it doesn't feel right for you to go out of your way to make others feel comfortable with your son's story or diagnosis, but not everyone is given the blessing to have a child and an even greater blessing a child with disabilities. So going forward...I am going to do my best to not take things like that personal and be an advocate for my son. I have always thought, I advocated for my students in my classroom as an MI teacher and did what was right for them, but when you take that role as a parent it has a whole new meaning to be your own child's voice.
We have some big appointments this week. Wednesday, our day will begin, at 8:30am at the MFM office at Toledo Hospital with finishing Oscar's anatomy ultrasound along with getting more detailed images of his Dandy Walker Malformation in his brain and meeting with the MFM specialist. From there, we will head to see the Pediatric Cardiologist and do some more ultrasounds/echocardiogram and consults with her and hopefully finish our day around 2:30-3:00pm. Then on Thursday, we will meet my new OB since my old one was not in Paramount network and we are just trying to simplify things where we can. We will plan to update next weekend with the findings from our appointments on Wednesday.
Final things with joining the FB group, Trisomy 13 Life - Living with Patau Syndrome I came across a survey that was completed into 2007 of families that had a child with Trisomy 13. Here are the Results at a Glance. I think they are pretty exciting and give us hope for Oscar's life outside of the womb.
As I go into this week I think about a verse I found when I was reading through the Bible in a Year awhile back. The verse is in 2 Chronicles 20. King Jehoshaphat and his people of Judah are getting ready to be attacked by the Moabites, Ammonites, and a few Meunites as well. The Spirit of the Lord came on Jahaziel son of Zechariah. In verse 15, Jahaziel said, "Listen, King Jehoshaphat and all who live in Judah and Jerusalem! This is what the Lord says to you: 'Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's'. I am thankful for those words because in this life, this battle, it is not ours, but God's.
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