My Angel Baby Rumaisa

I'm sorry for your loss.

I would do something to remember her - plant something, visit somewhere she might have liked, take time to look through photos and think of her, whatever helps.

I would also celebrate her brother. You have lost a child, but you still have a child and maybe think of his birthday as a reminder that life goes on, there is still joy. She would want you to remember joy.

Celebrate your daughter's birthday in heaven on the 15th and once the day is done, her celebration is done. The 16th is a new day and your son deserves his birthday as well. I can't imagine how difficult it is to lose a child. You can't forget that you have another who is still here to celebrate with. How can you NOT celebrate his birthday on the 16th?

It is okay to celebrate your daughter. It is okay to miss her every day and think of her. Don't take away your son's birthday because you are too busy missing your daughter. Maybe you can take some time on the 15th to go shopping "with your daughter". Go to the store and pick out a birthday gift for your son to be a special gift from his sister. He is too young to understand now, but it might be something to help you through the process of celebrating his birthday and also a way to "include her" on his birthday celebration...just a thought...

I am sorry for your loss. :-(

okay, S....(sigh)

I am rapidly approaching the birthdate of my Angel Girl. She would have been 19 this year. Each year, I buy a bouquet of flowers. I also light a special candle in her honor. This is how I choose to honor my daughter. If she had lived, I would have given her flowers on each birthday....& the candle is for remembrance.

There are only 19 days between birth & death for our daughter. I keep the flowers freshened, & on the anniv of her death.....I again light the candle & add/renew the flowers. For me this is the only way I have to express my love for her.....thru the gift of flowers & prayer.

3 years ago, my beloved Dad passed away....on the anniv of my daughter's death. Since then, I also light a candle for him.

With our daughter's passing, our #1 thought was organ donation. This was not possible due to her medical issues. As a secondary consideration, we "gifted" her body to the research center....part of our Children's Hospital. Cremation follows this. Therefore, we do not have a cemetery to visit.....but a memorial garden is tended.

With my Dad, I do regularly visit his grave. He was not a devout man, but did love his Jack Daniels (a popular whiskey in America). I take a bottle with me & have a sip....while tending to his grave. It is what he would have wanted....

Sooo, perhaps lighting a candle in memory of your daughter would help you. & please, please celebrate your son's birthday! We have to live for the living....while still honoring the angels in our lives. :)

EDIT: after your SWH....let it out, honey! Bottling this emotion will only prolong your grief. I learned this the hard way. It took a rash head-to-toe for me to seek help. When I took the script to the pharmacy, the pharmacist (small town, local guy) sat down with me & explained the dangers of the med. I took the meds until my rash was gone....& then threw away the bottle. To this day, I have no memory what that med was.... & I don't want to know. I just know that thru a stranger's help, I was able to use the drug as needed & then quit.

After our daughter died, the winter months were long & unbalanced for me. I read a book which said that "once a child is born, that soul is forever twinned with the mother's". It is that thought & belief which has carried me these last 19 years. I hope this helps bring Peace to you. :)

Oh S., I am so so sorry for your loss. There is no greater pain than loosing a child. My son passed away 11 years ago and it is still so hard. We go some where as a family for his birthday but we do not do anything for the anniversary of his death. It is just too painful. I actually have never gone back to the cemetery where my son is buried. I don't like to think of him there at all. Your grief is still so fresh so my advice is to do what ever you have to do to get through the day. Your son is such a blessing and someday you will be able to feel the joy in his birthday. Be kind to yourself. (hugs)

S.: I am adding to my answer. I found you these links for MLD support groups. Not newsletters, but a real online forum to discuss issues with other caregivers of MLD sufferers. Please log on and tell your story.

http://mldfoundation.org/discussion.html

http://lists.mldfamily.org/mailman/listinfo/discuss

Also, God as I know Him, gave us bodies that hurt when our loved ones hurt. We feel pain, both in our bodies and in our minds for a reason. Your pain doesn't mean you have lack of faith, it means your body is operating as God made it. And if you cannot find support with the people around you, find support with us. I cannot speak for everyone but before all other things, I am a woman first, a mother second, and a human third. Your pain is mine. So find others on that page I sent, and talk to people who understand you. You are not alone.

Email me if you need anything.

I agree with AV. You are obviously still grieving and that's okay. Look at pictures, maybe plant flowers or release some balloons into the sky. Prepare her favorite meal, or have a sweet in her honor. And your little boy, he is only 1 year old, so he won't know if you are unhappy, he will just know you are there and everyone is there with him. You don't have to be perfect on that day, just do your best. Your kids just need you to do your best. When he is two years old, and then three years old, your pain will be in a different place and you will be able to balance the JOY with the pain.

I will be thinking of you.

S., I am so, so sorry for your loss. I, too, have a baby girl in heaven, though mine was stillborn, so I never got to really know her, I still miss her terribly.

I think it is wonderful that you do what you can to remember her on her birthday. It is important to remember her life! If making a cake helps your family, then you should keep doing it! I'm sure it's difficult not to be able to visit her on her birthday. I am sure that your daughter knows your love even now. You can honor her from home as a family.

It may be difficult to push aside the sorrow to celebrate your son's birthday the next day. BUT, you are a good mom, and you can do it! Birthdays celebrate life. Your son is turning a year old! :) What a happy, joyous day for you to celebrate this past year watching him grow and mature and be an amazing little boy! You may hurt in the loss of your daughter, even on your son's birthday, that's OK! But the heartache of losing your daughter doesn't mean that you can't be happy and celebrate your other children. Your daughter wouldn't want you to be so sad because of losing her on happy days. She would want to celebrate her little brother's life right along with you!

Hugs, good thoughts, prayers, and lots of support to you and your family!

So so very sorry for your heartache.

Your son must have the lovely celebration of his birth as you normally would have done years ago. Think of how much fun your older daughter would have had celebrating her brother's birthday. Throw a party that honors that spirit.

As for your celebrating your daughter, how about doing something that helps other little girls. You could donate some gifts to a children's shelter or spend some time volunteering at a local park or gardens planting flowers. Something like that that keeps you active and helps a little girl in need.

I would first like to say that I am deeply sorry for you're loss.
Losing someone you love is never easy... Especially a child.
I know that everyday she is on your mind...and in your heart.
I think that you should celebrate her life...weather it be her favorite dinner, cake, movie, pictures, etc... And start a garden in her honor to remember her... Tat can be a special time for you to pray and talk to her... I old alos release balloons at every birthday... A friend of mine did that for her boys when they passed ( which I felt was very appropriate and heartfelt).
I would also take the time to do something special for your son... God has blessed you with another blessing. Love him, and celebrate his life as well...( life is so short and oh so precious enjoy every moment of it with the amazing people God has put in your life).
I'll keep you in prayer.

God Bless and stay strong...

Dear S., I am truly so, so sorry for you and your precious girls with this rare genetic disorder. Honestly, there are no magic words to ever make this pain better or ever take away the difficult situation. You too are an angel S. to provide a loving and safe home for your children.

I cannot imagine the hurt in your heart when you stand their and apologize. Is your 2nd daughters prognosis the same as your first daughter's?

Is it possible to connect with your Pediatrician or a Genetic Counselor and join a support group for this condition? You have a lot of mourning going on with both the loss of one daughter and the current condition of your next daughter. I'm assuming your son did not present with the symptoms yet?

Since you are still grieving over many stages of death and the process of dying, I think it's critical you find a family therapist and support group that deals with the loss of a child.

You have to spend time every day celebrating your life, you sons life and your girls' lives. If you need to light a candle and make a memorial cake, then you should do that. Your son can celebrate with you. Perhaps he'll have his own ideas to contribute, like color of candles, or planting pretty flowers, or a special tree.

I wish you peace S.. I am so sorry. I hope you find other parents nearby you can call on and tell them you having a depressing moment and day. You have no control over how your daughters inherited this genetic condition and I honestly hope you will believe that and learn to live with joy and love for you son. He deserves it too.

Oh, I'm so so very very sorry for your loss. This is so heartbreaking.

You lived with your daughter for 8 years...it will take you at least 8 years to learn to live without her, if not longer. Mothers never forget their children, no matter how much time they get with each other. You loved your daughter - that is evident. Give yourself time but remember, you have other people to have joy and hope for, esp for your bedridden child.

Give your son his celebration, even if its a small one. It will give your heart and mind some rest. The next day, find some time outdoors...perhaps bring pictures of her with you, and some of her special things you can hold to your heart. Talk to her and tell her how you are. Let the sun shine down on you and know that its her smile that gives the son its glow that day :)

I pray as the day approaches you will be surrounded by sweet precious memories of your daughter, loving friends, kind hearts and a peace that passes all understanding.

I suggest you call the doc and ask them to please do a med check on you. It is normal to mourn, losing a child is not like any other event in our lifetime. It is an unexpected death at an unexpected time. There is no preparing for this, it just happens and leaves that hole.

I pray that you will be able to get some medical intervention and that you are part of a raindrops group or some other support group that helps each other at the darkest times like this.

I know your heart is heavy and it seem there is no way out of this fugue. Medication can help when it's the right one and the support of friends that understand is a great help too.