Definitely not directed at anyone, I just saw this list one of my "friends through loss" blog. Much of it rings true.
20 Things This Parent of an Angel Wishes You Would Remember...
1. I wish you would not be afraid to mention Sweet Pea. The truth is just because you never saw her doesn't mean she doesn't deserve your recognition.
2. I wish that if we did talk about Sweet Pea and I cried you didn't think it was because you have hurt me by mentioning her. The truth is I need to (and often want to) cry and talk about her with you. Crying and emotional outbursts help me heal.
3. I wish that you could talk about Sweet Pea more than once. The truth is if you do, it reassures me that you haven't forgotten her and that you do care and understand.
4. I wish you wouldn't think that I don't want to talk about Sweet Pea. The truth is I love her and need to talk about her.
5. I wish you could tell me you are sorry Sweet Pea died and that you are thinking of me. The truth is that it tells me you care.
6. I wish you wouldn't think what has happened is one big bad memory for me. The truth is the memories, the love I feel for her, the dreams I had and the memories I have created for her are all loving memories. Yes there are bad memories too but please understand that it's not all like that.
7. I wish you wouldn't pretend that Sweet Pea never existed. The truth is we both know I had her growing inside me for 5 months.
8. I wish you wouldn't judge me because I am not acting the way you think I should be. The truth is grief is a very personal thing and we are all different people who deal with things differently.
9. I wish you wouldn't think if I have a good day I'm "over it" or if I have a bad day that I am being unreasonable because you think I should be over it. The truth is there is no "normal" way for me to act and I will never be "over it".
10. I wish you wouldn't stay away from me. The truth is loosing Sweet Pea doesn't mean I'm contagious. By staying away you make me feel isolated, confused and at fault for something I had no control over.
11. I wish you wouldn't expect my grief to be "over and done with" in a few weeks, months, years or ever for that matter. The truth is it may get easier with time but I will never be "over" this.
12. I wish you would think of Sweet Pea as a baby and and not just a death. The truth is she was a human life. She had a soul, heart, body, legs, arms, a face and a unique personality. My baby was a real person.
13. Sweet Pea's due date, her angel date, and Mothers Day, are all important and sad days for me. The truth is I wish you could tell me by words that you are thinking of me on these days.
14. I wish you understood that losing Sweet Pea has changed me. The truth is I am not the same person I was before nor will I ever be that person again. If you keep waiting for me to get back to "normal" you will stay frustrated and continue waiting. I am a new person with new thoughts, dreams, beliefs, and values. Please try to get to know the new "me"-maybe you'll still like me.
15. I wish you wouldn't tell me that I can have other babies. The truth is I want the baby I lost and no other baby can replace Sweet Pea. Babies aren't interchangeable.
16. I wish you wouldn't feel awkward or uncomfortable talking about Sweet Pea or being near me. When you do, I can see it. The truth is it's not fair to make me feel uncomfortable just because you are, I'm dealing with enough as it is.
17. I wish you wouldn't think that you should keep away because all my friends and family will be there for me. The truth is, everyone thinks the same thing and I am often left with no one.
18. I wish you would understand that being around pregnant women is uncomfortable for me. The truth is I feel jealous, angry and sad.
19. I wish you wouldn't say that everything happens for a reason. The truth is as far as I'm concerned no explanation would or could ever be good enough to justify that fact that Sweet Pea is gone.
20. I wish you would understand what you are really saying when you say "the next baby will be fine". The truth is how do you know? Can you guarantee that my next baby will be healthy? What will you say if it happens to me again?
Thursday, November 27, 2008
Friday, November 21, 2008
Build a Bear Trip!
The Mommy group that sent me the necklace for Sweet Pea also sent a spa gift certificate for me, a Build a Bear gift card and book called "We Were Going to Have a Baby, But We Had an Angel Instead" for Brooks. They are so incredibly thoughtful!
Tonight we went to Build A Bear. Brooks was very excited and the trip combined his two favorite things; dinosaurs and football. He named his T-Rex Oscar because he wanted it to have a name that started with O. He also bought a mini footbal and field goal so Oscar could practice his kicks. :-)
Those of you that have been to BAB know this, but before they stitch the bear shut you put in a little stuffed heart. Well, I told Brooks while he was waiting that the mommies and kids that sent him this special gift did so because we were going to miss the baby. I told him it would be neat to put in two hearts, one for him and one for the baby. He LOVED that idea and was excited to do it. Bless the BAB worker's heart. She said, "Oh, you want to put in two." And Brooks told her one for him and one for his baby. She said, "Oh, do you have a baby at home?" I immediately froze. Crap! And Brooks calmly said, "No our baby is in heaven with Jesus." I was so proud of him, but I did feel really bad for the girl because she of course didn't know what to say.
Just a small reminder that there will always be everyday reminders of what could have been. Luckily I am not seeing many people that don't know about our loss anymore. I did see one lady this week at Old Navy who just started going on and on about how I wasn't even showing. I tried to cut her off, but it is hard because you don't want to make them feel like an idiot, but you can't not say anything. There just isn't a good way to handle something like that.
Here are some pics of Brooks at BAB
Tonight we went to Build A Bear. Brooks was very excited and the trip combined his two favorite things; dinosaurs and football. He named his T-Rex Oscar because he wanted it to have a name that started with O. He also bought a mini footbal and field goal so Oscar could practice his kicks. :-)
Those of you that have been to BAB know this, but before they stitch the bear shut you put in a little stuffed heart. Well, I told Brooks while he was waiting that the mommies and kids that sent him this special gift did so because we were going to miss the baby. I told him it would be neat to put in two hearts, one for him and one for the baby. He LOVED that idea and was excited to do it. Bless the BAB worker's heart. She said, "Oh, you want to put in two." And Brooks told her one for him and one for his baby. She said, "Oh, do you have a baby at home?" I immediately froze. Crap! And Brooks calmly said, "No our baby is in heaven with Jesus." I was so proud of him, but I did feel really bad for the girl because she of course didn't know what to say.
Just a small reminder that there will always be everyday reminders of what could have been. Luckily I am not seeing many people that don't know about our loss anymore. I did see one lady this week at Old Navy who just started going on and on about how I wasn't even showing. I tried to cut her off, but it is hard because you don't want to make them feel like an idiot, but you can't not say anything. There just isn't a good way to handle something like that.
Here are some pics of Brooks at BAB
Thursday, November 20, 2008
Fun, fun, fun!
Well we are gearing up for Thanksgiving! Thursday we will be here with my family, Friday morning I will hit the Black Friday sales with my sister, and Friday afternoon we will head to Salina to celebrate with Josh's family. It should be a busy, but fun break!
I actually have all of my Christmas decorations up (except the tree, because we get a real one)! I have never been finished this early, so it is very nice to be done! The only difficult part was thinking that our family would have been complete next year. As I was putting on the breakable ornaments and hanging the stockings I kept remembering how I had thought next year would be so different with a baby around again. Our stocking holders are letters that spell out Santa. We have stockings for all of us and Maddy. Since there is still an extra holder, Brooks kept asking who was going to have a stocking on the other "a"? I did good and told him that maybe if we have another baby their stocking could hang there.
Last, but not least. I am pretty much healed physcially from the loss. However I have a painful bladder infection that I am starting antibiotics for today. It just never ends! Hopefully all of these issues will soon cease and the physical part will all be a distant memory. Now if only I could say the same for the emotional part!
"There are two lasting bequests we can give our children. One is roots. The other is wings." Hodding Carter, Jr.
I actually have all of my Christmas decorations up (except the tree, because we get a real one)! I have never been finished this early, so it is very nice to be done! The only difficult part was thinking that our family would have been complete next year. As I was putting on the breakable ornaments and hanging the stockings I kept remembering how I had thought next year would be so different with a baby around again. Our stocking holders are letters that spell out Santa. We have stockings for all of us and Maddy. Since there is still an extra holder, Brooks kept asking who was going to have a stocking on the other "a"? I did good and told him that maybe if we have another baby their stocking could hang there.
Last, but not least. I am pretty much healed physcially from the loss. However I have a painful bladder infection that I am starting antibiotics for today. It just never ends! Hopefully all of these issues will soon cease and the physical part will all be a distant memory. Now if only I could say the same for the emotional part!
"There are two lasting bequests we can give our children. One is roots. The other is wings." Hodding Carter, Jr.
Tuesday, November 11, 2008
Rough day!
Today was our appointment with the genetic specialist. It was so much to take in. The specialist was from Children's Mercy, but he saw us at Dr. Ridgeway's office, the perinatologist. Being back in that office was a little tough. I had to relive the "experience" of the last time we were there. And those damn sonogram pictures! Every couple that came out had them.
So on to the appointment. . . the specialist was amazing. He listened and let me interrupt with my thousand questions! Anyone who does that wins my approval! :-) Josh really liked him also. He first looked back through the reports from the doctor and asked us about everything. He made a family diagram starting with our parents, then each of us and our siblings, and finally all our nieces and nephews. We went through and shared health issues anyone had and he asked about our mother's pregnancies.
Next we discussed the fact (which I knew from all the reading I have been doing) that there are multiple issues going on here. Sweet Pea did have Potter's Syndrome (as I had concluded), but the reasons for Potter's syndrome can vary. He said this reminded him of a case he had when he first started working. Considering he was probably in his 60s that wasn't such a reassuring statement. Due to the fact that an autopsy was not able to be performed on the baby we didn't have that data to use. So essentially we are looking at three possibilities. (By the way, he did clarify that Sweet Pea probably had a bladder, but it would not be visible because there was no fluid.)
1. FLUKE
The kidney was MULTIcystic, and the other kidney didn't form. If we have another child there would be no greater chance of any disabilities or disorders than usual.
2. INFANTILE Polycystic Kidney Disease
This would mean that Josh and I each would carry a recessive gene. Infantile polycystic disease is more often than not fatal simply because if there is no fluid in the womb, the lungs don't develop. Any future children would have a 25% chance of being affected by this disease.
3. Polycystic Kidney Disease
This would mean that either Josh or I have the dominant gene. It would also mean that we (Josh or I) has polycystic kidney disease. In this situation the chance of future children being affected is 50%.
So the missing kidney and the cystic kidney are two different issues. . . most likely. The first thing we would have to do is both Josh and I need to have a renal sonogram done to check two things. We would need to check that both of us have two kidneys. Surprisingly, it is much more common than people think to have one kidney. Many people live their life without knowing they have one kidney. He said people only use 1/2 of a kidney to "live on". If one of us has one kidney that could explain the one kidney in Sweet Pea. The other is to see if either Josh or I have a polycystic kidney. If one of us had polycystic disease it should have presented itself by now with cystic kidneys seen on the ultrasound (the only other symptom we might have would be high blood pressure.) This would be extremely important for us to know to deal with our own health as well as our reproductive health. If one of us has this it means the answer is most likely option 3 from above. One of us is a dominant carrier AND we would need to get Brooks in to see a kidney specialist to check his health. (That part scares the crap out of me!!!)
If we both have the ultrasounds and everything looks fine we can rule out possibility #3. After that is where it gets even more confusing. The next step would be to have blood samples drawn to test for the recessive polycystic gene. This would be very expensive and since they don't truly know what was wrong with the baby it will be difficult. Even if they don't "find" the mutation it doesn't mean it isn't there. So pretty much that would tell us a whole lot of nothing! :-) However if they did find the recessive trait in both of us we would have a 25% chance of this happening again.
If we didn't have the recessive trait (although we would never know for sure), at that point we would most likely assume it was a fluke. Which means we would have a 3% chance of having something wrong with our baby . . . just like any other "normal" couple.
Clear as mud right?!?!!?
Really it is like going gambling. We have to decide what risk we are willing to take. He explained that most couples meet, get married, and have babies. As he said, "not many people deal with what you two have dealt with. Your story is tough. This is a very difficult loss and you need to allow yourselves time to grieve." At his point I started to cry thinking about what the last month and a half had been like. He also shared that having a healthy child doesn't mean anything. The possibility of being afflicted remains the same.
Whew! I am sure I have forgotten something, but I know many of you were concerned and wanted to know what we found out. Please continue to keep us in your thoughts and prayers!
"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go." ~Author Unknown
So on to the appointment. . . the specialist was amazing. He listened and let me interrupt with my thousand questions! Anyone who does that wins my approval! :-) Josh really liked him also. He first looked back through the reports from the doctor and asked us about everything. He made a family diagram starting with our parents, then each of us and our siblings, and finally all our nieces and nephews. We went through and shared health issues anyone had and he asked about our mother's pregnancies.
Next we discussed the fact (which I knew from all the reading I have been doing) that there are multiple issues going on here. Sweet Pea did have Potter's Syndrome (as I had concluded), but the reasons for Potter's syndrome can vary. He said this reminded him of a case he had when he first started working. Considering he was probably in his 60s that wasn't such a reassuring statement. Due to the fact that an autopsy was not able to be performed on the baby we didn't have that data to use. So essentially we are looking at three possibilities. (By the way, he did clarify that Sweet Pea probably had a bladder, but it would not be visible because there was no fluid.)
1. FLUKE
The kidney was MULTIcystic, and the other kidney didn't form. If we have another child there would be no greater chance of any disabilities or disorders than usual.
2. INFANTILE Polycystic Kidney Disease
This would mean that Josh and I each would carry a recessive gene. Infantile polycystic disease is more often than not fatal simply because if there is no fluid in the womb, the lungs don't develop. Any future children would have a 25% chance of being affected by this disease.
3. Polycystic Kidney Disease
This would mean that either Josh or I have the dominant gene. It would also mean that we (Josh or I) has polycystic kidney disease. In this situation the chance of future children being affected is 50%.
So the missing kidney and the cystic kidney are two different issues. . . most likely. The first thing we would have to do is both Josh and I need to have a renal sonogram done to check two things. We would need to check that both of us have two kidneys. Surprisingly, it is much more common than people think to have one kidney. Many people live their life without knowing they have one kidney. He said people only use 1/2 of a kidney to "live on". If one of us has one kidney that could explain the one kidney in Sweet Pea. The other is to see if either Josh or I have a polycystic kidney. If one of us had polycystic disease it should have presented itself by now with cystic kidneys seen on the ultrasound (the only other symptom we might have would be high blood pressure.) This would be extremely important for us to know to deal with our own health as well as our reproductive health. If one of us has this it means the answer is most likely option 3 from above. One of us is a dominant carrier AND we would need to get Brooks in to see a kidney specialist to check his health. (That part scares the crap out of me!!!)
If we both have the ultrasounds and everything looks fine we can rule out possibility #3. After that is where it gets even more confusing. The next step would be to have blood samples drawn to test for the recessive polycystic gene. This would be very expensive and since they don't truly know what was wrong with the baby it will be difficult. Even if they don't "find" the mutation it doesn't mean it isn't there. So pretty much that would tell us a whole lot of nothing! :-) However if they did find the recessive trait in both of us we would have a 25% chance of this happening again.
If we didn't have the recessive trait (although we would never know for sure), at that point we would most likely assume it was a fluke. Which means we would have a 3% chance of having something wrong with our baby . . . just like any other "normal" couple.
Clear as mud right?!?!!?
Really it is like going gambling. We have to decide what risk we are willing to take. He explained that most couples meet, get married, and have babies. As he said, "not many people deal with what you two have dealt with. Your story is tough. This is a very difficult loss and you need to allow yourselves time to grieve." At his point I started to cry thinking about what the last month and a half had been like. He also shared that having a healthy child doesn't mean anything. The possibility of being afflicted remains the same.
Whew! I am sure I have forgotten something, but I know many of you were concerned and wanted to know what we found out. Please continue to keep us in your thoughts and prayers!
"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go." ~Author Unknown
Tuesday, November 4, 2008
One month anniversary. . .
I can't believe it has been a month since Sweet Pea went to be with Jesus. Somedays it seems like it was so long ago and other days it seems like it was yesterday. I actually feel really good. As bad as it sounds, I think having already lost Mom helped make this easier. I am just putting all my energy into Brooks and that feels good. When I am pregnant I am always so so sick. I was even worse with Sweet Pea's pregnancy than Brooks. I was sick 24 hours a day for 21 weeks. So it has been nice to be able to devote more of myself to Brooks.
One thing I have noticed myself feeling that has surprised me is that I am not sure if I do want another child. Right after everything happened I wanted to be pregnant right away. Now I am just not sure if my heart can handle it. I think about how I would deal with it if we had another baby with terminal issues. I don't know how I would go through that again. I also worry about Brooks and the baby being so far apart in age. We had always wanted to have our children about 4 years apart. When we got pregnant with Sweet Pea it was perfect. Sweet Pea was due 4 1/2 years to the day after Brooks. Also, they both could have been born on Friday the 13th. Now we are looking at minimum a five year gap. Is that too far apart? I don't know. The other issue is that we always wanted two children. I now have one child on earth and one in heaven. Do I need a third child with me here?
I guess as time passes many of these questions will be answered. I feel some pressure to make a decision about another kiddo before too much time passes.
“It is always the simple things that change our lives. And these things never happen when you are looking for them to happen. Life will reveal answers at the pace life wishes to do so. You feel like running, but life is on a stroll. This is how God does things.”
One thing I have noticed myself feeling that has surprised me is that I am not sure if I do want another child. Right after everything happened I wanted to be pregnant right away. Now I am just not sure if my heart can handle it. I think about how I would deal with it if we had another baby with terminal issues. I don't know how I would go through that again. I also worry about Brooks and the baby being so far apart in age. We had always wanted to have our children about 4 years apart. When we got pregnant with Sweet Pea it was perfect. Sweet Pea was due 4 1/2 years to the day after Brooks. Also, they both could have been born on Friday the 13th. Now we are looking at minimum a five year gap. Is that too far apart? I don't know. The other issue is that we always wanted two children. I now have one child on earth and one in heaven. Do I need a third child with me here?
I guess as time passes many of these questions will be answered. I feel some pressure to make a decision about another kiddo before too much time passes.
“It is always the simple things that change our lives. And these things never happen when you are looking for them to happen. Life will reveal answers at the pace life wishes to do so. You feel like running, but life is on a stroll. This is how God does things.”
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