I'm surrounded by people and children everyday at work. On the weekends, I have my husband, daughter, church, and often friends or family. Why do I still feel so isolated?
My daughter had her first play date last weekend with a typical child from her K class. I was so touched that she was asked, still am really. But it was an eye-opening reminder of exactly how different our lives are.
Even amongst other special needs parents, I rarely find someone I can connect with. I crave a friend who has been there. Who won't complain about how badly they felt when their baby got his shots. Someone who can share in our joys.
I posted about the play date on my daughter's blog and got no comments. I posted about it on a special needs parenting message board and got resounding replies. I just wish one of those people were local, so that I could occasionally have a day out!
Wednesday, September 16, 2009
Wednesday, May 27, 2009
The Green Eyed Monster
I've spent the past 5 months reflecting on the idea of jealousy. What brought this particular emotion to the forefront for me? My younger sister announced that she was pregnant. Now, I won't get into all the dysfuntional family fun that accompanies every single event, action, and topic that occurs on my side of the family. But at some point, it was suggested that my sis should 'watch out for' myself and my DH because we would be jealous of her normal, healthy baby.
After the pain from that comment subsided, I've had a lot of time to think about why someone would assume that I couldn't just be happy for another person, especially a sister, having a healthy child.
Of all the emotions that surround having a severly disabled child, jealousy that others have healthy children is one that I hadn't ever considered. Why isn't it enough for me to just be happy to HAVE my daughter still in my life.
There are times when I have a really difficult time with 'typical' child stuff. Christmas is rough when we watch our nephews opening gifts and getting excited about new toys, knowing that our family's gifts for our child will likely be clothing and gift cards, knowing that our daughter doesn't comprehend that Christmas is different than any other day. Other children's birthday parties are even worse.
But these are not times of jealousy, but of grieving for what we have lost.
It's times like these that I am forcefully reminded that my family will never understand the depth of our love for our daughter and what it really means to be a parent to a truly special child. Why can't they see that caring for our daughter is not, nor has it ever been, a burden. That I am the person that I am today because of her, not in spite of her. I have lived through things I would have never been able to imagine that I could survive (and I know in the deepest, darkest corners of my mind that there will be more, and likely worse, times like these to come). I have known what it is to feel truly helpless, to be stared at for being different, to hear strangers whisper terrible things about my child.
But the joys are even greater. Seeing my child smile again after a near-fatal illness. Hearing her laugh for the first time. The unconditional love that she provides. Meeting amazing parents from all over the world, brought together by our children. Being given opportunites that I had never imagined would be possible. But I digress....
My daughter is such an amazing gift. I simply wish that others, especially my family, could have a glimpse of what I truly feel for her. Perhaps then they would understand why jealousy is not the problem.
After the pain from that comment subsided, I've had a lot of time to think about why someone would assume that I couldn't just be happy for another person, especially a sister, having a healthy child.
Of all the emotions that surround having a severly disabled child, jealousy that others have healthy children is one that I hadn't ever considered. Why isn't it enough for me to just be happy to HAVE my daughter still in my life.
There are times when I have a really difficult time with 'typical' child stuff. Christmas is rough when we watch our nephews opening gifts and getting excited about new toys, knowing that our family's gifts for our child will likely be clothing and gift cards, knowing that our daughter doesn't comprehend that Christmas is different than any other day. Other children's birthday parties are even worse.
But these are not times of jealousy, but of grieving for what we have lost.
It's times like these that I am forcefully reminded that my family will never understand the depth of our love for our daughter and what it really means to be a parent to a truly special child. Why can't they see that caring for our daughter is not, nor has it ever been, a burden. That I am the person that I am today because of her, not in spite of her. I have lived through things I would have never been able to imagine that I could survive (and I know in the deepest, darkest corners of my mind that there will be more, and likely worse, times like these to come). I have known what it is to feel truly helpless, to be stared at for being different, to hear strangers whisper terrible things about my child.
But the joys are even greater. Seeing my child smile again after a near-fatal illness. Hearing her laugh for the first time. The unconditional love that she provides. Meeting amazing parents from all over the world, brought together by our children. Being given opportunites that I had never imagined would be possible. But I digress....
My daughter is such an amazing gift. I simply wish that others, especially my family, could have a glimpse of what I truly feel for her. Perhaps then they would understand why jealousy is not the problem.
Thursday, May 21, 2009
More than a year.....
Wow, it's been a long time since I thought about blogging. As you can see, I'm not a very good writer. I'm not terribly original or creative. I'm not very motivated and it takes me a long time to feel comfortable enough to actually publish my thoughts on the blog. Seriously, you wouldn't believe how many half finished posts I have sitting in my drafts folder. Perhaps it's because I only feel the need to put my thoughts in writing when I'm at a crossroads in life? Perhaps it's because I'm already blogging regularly on a site about my daughter (that no one really reads anyway). I don't know, I'm probably thinking way too hard about this.
I find that I get very emotional this time of the year, so that's likely related to this resurgence of the need to write things down. During this month last year, I sat with a dear friend in her son's PICU room watching him slip away from us and eventually earn his wings. During this week three years ago, I sat in a PICU room with my own daughter watching her struggle to recover from multiple brain surgeries that we hoped would save her life.
/sigh, just more of my silly ramblings.
I find that I get very emotional this time of the year, so that's likely related to this resurgence of the need to write things down. During this month last year, I sat with a dear friend in her son's PICU room watching him slip away from us and eventually earn his wings. During this week three years ago, I sat in a PICU room with my own daughter watching her struggle to recover from multiple brain surgeries that we hoped would save her life.
/sigh, just more of my silly ramblings.
Tuesday, August 14, 2007
Life is too short to wake up in the morning with regrets.
So love the people who treat you right and forget the ones who don't.
Believe that everything happens for a reason.
If you get a chance, take it.
If it changes your life, let it.
Nobody said it would be easy, only that it would be worth it.
~Author Unknown
Our Miracles
I have a very dear friend, someone I've known nearly my entire life. For a time, our lives grew in different directions, but with the births of our children we have become, in many ways, closer than ever. You see, she's a member of the Special Mommy Club. Her child, J, has special needs. And although J's needs are very much different that DD's, we are sisters of the same family.
The last time I talked to her, the topic of faith and churches came up. It was a pivotal moment for me.
My dear friend spoke of how she and her husband have lost their faith and consider themselves atheists now. She talked about how God had not answered their prayers and had not given them their miracle. J had a multiple organ transplant a few months ago. It was "supposed" to have been their miracle. But instead, J is just as sick has he was before surgery.
It has been several years (well since DD's birth) since we belonged to a church, but in our hearts our faith is stronger than ever. It has been logistics actually keeping us home on Sunday mornings--the effort involved in getting DD, her wheelchair, feeding supplies, oxygen, meds, and various monitors ready and loaded in time for the service to start, not to mention the risk in waking the sleeping (seizure prone) baby. Interestingly, my dear friend incorrectly interpreted our lack of church attendance as our being angry with God at letting our child have such a difficult life.
It was at that moment that I realized how much differently I perceive DD's life. DH and I believe that we have already gotten our miracle. Our miracle arrived the day DD was born, and the next day when she came of the ventilator, and the next week when she first took a bottle, and the next month when she came home to us, and the next year when an amazing doctor gave her the chance to live without seizures.
We're not waiting for our miracle. We've gotten our miracle. Everyday that we have DD in our lives IS A MIRACLE!
The last time I talked to her, the topic of faith and churches came up. It was a pivotal moment for me.
My dear friend spoke of how she and her husband have lost their faith and consider themselves atheists now. She talked about how God had not answered their prayers and had not given them their miracle. J had a multiple organ transplant a few months ago. It was "supposed" to have been their miracle. But instead, J is just as sick has he was before surgery.
It has been several years (well since DD's birth) since we belonged to a church, but in our hearts our faith is stronger than ever. It has been logistics actually keeping us home on Sunday mornings--the effort involved in getting DD, her wheelchair, feeding supplies, oxygen, meds, and various monitors ready and loaded in time for the service to start, not to mention the risk in waking the sleeping (seizure prone) baby. Interestingly, my dear friend incorrectly interpreted our lack of church attendance as our being angry with God at letting our child have such a difficult life.
It was at that moment that I realized how much differently I perceive DD's life. DH and I believe that we have already gotten our miracle. Our miracle arrived the day DD was born, and the next day when she came of the ventilator, and the next week when she first took a bottle, and the next month when she came home to us, and the next year when an amazing doctor gave her the chance to live without seizures.
We're not waiting for our miracle. We've gotten our miracle. Everyday that we have DD in our lives IS A MIRACLE!
Wednesday, August 8, 2007
5 great things about DD
1. She has the most fantastic eyelashes. Long, thick and curled perfectly. I would die for those lashes.
2. She has my chin.
3. She has taught me more about myself in 3 years, than I had learned in the 25 years prior.
4. Her strength is inspiring.
5. She has the most beautiful smile. Everytime I see it, all of the daily stresses melt away if, only for a moment.
2. She has my chin.
3. She has taught me more about myself in 3 years, than I had learned in the 25 years prior.
4. Her strength is inspiring.
5. She has the most beautiful smile. Everytime I see it, all of the daily stresses melt away if, only for a moment.
Tuesday, August 7, 2007
I hate students
I hate dealing with students as part of my DD's medical team. I really wish that I could be the bigger person and say that its our responsibility to participate in training new nurses and doctors. But I'm not and I don't.
Whoever said that there's no such thing as a stupid question has obviously never dealt with a medical student.
Medical students are the first ones sent in to talk with you when your child is admitted to the hospital. They ask you around 300 questions, 10 of which may actually pertain to your child. An hour later they leave to report their findings to the resident, who enters the picture later to allow you to correct everything the student messed up.
Medical students travel in packs. They tend to have matching hair, accessories, and bags/backpacks--I suppose to help convince the rest of us that they really fit in and are important. They crowd into the elevator and have noisy discussions about the surgery they observed last week, the current state of medicine in the Dominican Republic, or the neurotic mother they encountered this morning.
Ultimately, my dislike of medical students boils down to two things. First, the fact that all the extra bodies in the room stress out DD at a time when no additional stress is needed. If your doctor has something important or sensitive to discuss, 3 -6 students try to tag along to observe the delivery of that news. Second, we're fiercely private people who dislike the notion of being put on display. DH and I on one side of DD's bed, the doctor flanked by his posse on the other who will later be encouraged to discuss "us".
During our early days in Holland, the floor social worker visited us shortly after we had recieved some very disheartening news from 3 doctors with a total of 10 medical students in tow. We were so overwhelmed by all the bodies and so distressed by the doctors' announcements, DD was screaming and we were a mess. She told us that we had the right to refuse to participate in the training of students and new staff. She placed a lovely and polite sign on the door stating our wishes not to work with students. Now we routinely make our request within the first 15 mintutes of admission.
Whoever said that there's no such thing as a stupid question has obviously never dealt with a medical student.
Medical students are the first ones sent in to talk with you when your child is admitted to the hospital. They ask you around 300 questions, 10 of which may actually pertain to your child. An hour later they leave to report their findings to the resident, who enters the picture later to allow you to correct everything the student messed up.
Medical students travel in packs. They tend to have matching hair, accessories, and bags/backpacks--I suppose to help convince the rest of us that they really fit in and are important. They crowd into the elevator and have noisy discussions about the surgery they observed last week, the current state of medicine in the Dominican Republic, or the neurotic mother they encountered this morning.
Ultimately, my dislike of medical students boils down to two things. First, the fact that all the extra bodies in the room stress out DD at a time when no additional stress is needed. If your doctor has something important or sensitive to discuss, 3 -6 students try to tag along to observe the delivery of that news. Second, we're fiercely private people who dislike the notion of being put on display. DH and I on one side of DD's bed, the doctor flanked by his posse on the other who will later be encouraged to discuss "us".
During our early days in Holland, the floor social worker visited us shortly after we had recieved some very disheartening news from 3 doctors with a total of 10 medical students in tow. We were so overwhelmed by all the bodies and so distressed by the doctors' announcements, DD was screaming and we were a mess. She told us that we had the right to refuse to participate in the training of students and new staff. She placed a lovely and polite sign on the door stating our wishes not to work with students. Now we routinely make our request within the first 15 mintutes of admission.
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