Hi Logan,
Mommy packed up all of your medical supplies yesterday, and donated them to a bunch of other babies who needed them. I think the supplies include: a box of 3 ml syringes, a bag of 1 ml syringes, some big 30 ml and 60 ml syringes that we used when feeding you through the ng tube, 4-5 ng tubes, 6 Mead-Johnson Cleft Palate nursers, a stack of Tegaderm, and other little knick knacks. I finally went through all the stuff and gave them all away. We really have no use for them, and if some other kids can use them, that's great.
I met up with a mommy (kind of like a blind date) who is part of a feeding support group. I gave her everything, so that she could share with other mothers. I met with her 5-yr old son. Her son also has a suspected Mitochondrial disease, but they couldn't test which one specifically. He's been seen by this expert, Dr. Enns at Lucile Packard. I think the boy is in good hands. Dr. Enns is famous in the Genetics field, and I once wanted to get you transferred to Lucile Packard because of him. This little boy is developmentally delayed, has speech impairment, feeding issues, and ADHD. He is definitely a handful, but he's also so adorable. This mom also has another 11-month old son. It must be very difficult to take care of two young children.
We shared some stories and instantly felt a connection because of you little boys. It's amazing how strangers could meet up and started pouring their hearts out because of this special bond. I don't have much to offer, but to encourage and reassure her that everything would be fine. I told her that I work at The Arc, and that when her little boy grows up, he will be ok. There are many great agencies out there that will assist her son to be independent and self-sufficient. I am sure once you have a child with special needs, you start worrying about him for the rest of your life.
Am I lucky to not have to worry about you? Have you sacrificed yourself knowing our lives would never be the same because of your special needs? I told the mother how I wished your diagnosis was Down Syndrome, or Cerebal Palsy, or Autism, because at least, you would very likely still be here. However, you have Leigh's Syndrome. At least I know you're in a better place. I am confident that you are enjoying your days playing with little angels, so much better than a life with tubes and needles.
And you know what, Ah Gung and Ah Po sent you 10 more pinwheels in the mail. Some of them are very funny/interesting looking. I will definitely bring them to you next time.
Love you,
Mommy
Showing posts with label donation. Show all posts
Showing posts with label donation. Show all posts
Friday, August 7, 2009
Thursday, April 30, 2009
The Gift of Life
Dear Baby,
This evening, my received information from the Musculoskeletal Transplant Foundation with brochures and pamphlets of the National Kidney Foundation. I have previously received a card from the MTF to thank us for your gfit. Did I ever tell you we have donated your heart valves? I guess not. Even before you left us for Heaven, daddy and mommy have thought of donating your organs to help other babies. But we were unsure if it's possible because of the genetic disease that you had. On the day you went to Heaven, we asked the Chief if it's possible. She has actually tried to contact MTF to see if it's possible to donate your heart valves. The hours after you left us, Mommy spent a whole hour and a half on the phone with the counselor from MTF, and answered all the ten billion questions that they had regarding our medical history. Took them a while to figure out if it's possible. The following day, mommy received a phone call saying everything went well. Your heart has always been healthy. So, Mommy was glad that you will be able to save two to three babies' lives, if not, to contribute to research to save lives in the future. The hours after you left, and waiting for the MTF were tough. You were lying in bed in front of me, looking peaceful and angelic, but Mommy and Daddy had to stay strong, and waited for the long process to complete. We tried to stay positive. You could save lives!
Mommy was too chicken to look at your scar and your stitches. I only want to remember the good, and forget the bad. I remember always wanted to be an organ donor. But when it comes to actually putting that little sticker on my driver's licence, I chickened out. I don't know why. Theoretically, it's great. But at that moment, I just couldn't do it. But after this experience, you have given me the strength to get that sticker. I haven't done that yet, but I promise you, I will.
Getting information in the mail today reminded me that you have really left us. Periodically, they will send other information to us, and it will just keep reminding us that you're gone. However, I know one day I would be glad to receive information in the mail telling us that a baby has received this Gift of Life. I don't need details, I just want to know a baby is saved and his/her family doesn't have to go through what we have gone through. Then, it's all worth it.
Throughout this experience, I found out that there are many resources out there for grieving families. It seems like wherever we go, there's a pamphlet that lists different organizations or support groups. Even today, through the National Kidney Foundation, they have support groups and tons of resources. Unless I am in denial, I feel that I am still doing ok. I can still get up in the morning, run my errands, watch my tv, continue to surf the net and write my blog. Your big brother has also taken the responsibility to cheer Daddy and Mommy up. I think we're ok. But if we're not, we know where to turn to.
Honey, watch over all the other sick babies. Give them and their family strength. Hopefully, in a few months, Mommy will receive good news in the mail that a baby has been saved by your gift of life.
Love you,
Mommy
This evening, my received information from the Musculoskeletal Transplant Foundation with brochures and pamphlets of the National Kidney Foundation. I have previously received a card from the MTF to thank us for your gfit. Did I ever tell you we have donated your heart valves? I guess not. Even before you left us for Heaven, daddy and mommy have thought of donating your organs to help other babies. But we were unsure if it's possible because of the genetic disease that you had. On the day you went to Heaven, we asked the Chief if it's possible. She has actually tried to contact MTF to see if it's possible to donate your heart valves. The hours after you left us, Mommy spent a whole hour and a half on the phone with the counselor from MTF, and answered all the ten billion questions that they had regarding our medical history. Took them a while to figure out if it's possible. The following day, mommy received a phone call saying everything went well. Your heart has always been healthy. So, Mommy was glad that you will be able to save two to three babies' lives, if not, to contribute to research to save lives in the future. The hours after you left, and waiting for the MTF were tough. You were lying in bed in front of me, looking peaceful and angelic, but Mommy and Daddy had to stay strong, and waited for the long process to complete. We tried to stay positive. You could save lives!
Mommy was too chicken to look at your scar and your stitches. I only want to remember the good, and forget the bad. I remember always wanted to be an organ donor. But when it comes to actually putting that little sticker on my driver's licence, I chickened out. I don't know why. Theoretically, it's great. But at that moment, I just couldn't do it. But after this experience, you have given me the strength to get that sticker. I haven't done that yet, but I promise you, I will.
Getting information in the mail today reminded me that you have really left us. Periodically, they will send other information to us, and it will just keep reminding us that you're gone. However, I know one day I would be glad to receive information in the mail telling us that a baby has received this Gift of Life. I don't need details, I just want to know a baby is saved and his/her family doesn't have to go through what we have gone through. Then, it's all worth it.
Throughout this experience, I found out that there are many resources out there for grieving families. It seems like wherever we go, there's a pamphlet that lists different organizations or support groups. Even today, through the National Kidney Foundation, they have support groups and tons of resources. Unless I am in denial, I feel that I am still doing ok. I can still get up in the morning, run my errands, watch my tv, continue to surf the net and write my blog. Your big brother has also taken the responsibility to cheer Daddy and Mommy up. I think we're ok. But if we're not, we know where to turn to.
Honey, watch over all the other sick babies. Give them and their family strength. Hopefully, in a few months, Mommy will receive good news in the mail that a baby has been saved by your gift of life.
Love you,
Mommy
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