Help with Loss of a Child, Also Help with a Disabled Child.

I am so sorry for your loss. I can't imagine the pain you must feel. I haven't been in your situation though I do have special medical circumstances do deal with. I have a young son with cancer and a younger daughter to take care of. It can be difficult to meet the needs of each and feel like I am doing right by both. Not to mention the emotions and stress a parent feels related to the child's illness, the symptoms, the treatments, etc. Talking is very therapeutic for me. Perhaps talking to a grief counselor or spiritual counselor or joining a support group would help you. I try not to focus on why my son suffers from this illness. I just do the best can to take care of him in every way a mother should. I try to make life as normal as possible. I never forget about the struggles we face, but I try to balance out the negative by noticing the positive in my life...a good report from my son's doctor, a milestone my daughter reaches, the ability to pay the bills on time, a happy day playing in the yard, an unexpected hug from my husband, etc. It might be hard for others to understand, but it really helps me to keep focused on my entire life, not just the sad part that is so easy to gravitate to.

If you are a spiritual person I'd like to offer a quote to consider and a book to read. A quote that gives me much guidance is..."God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way." It says to me know that bad things will happen in my life, but if I open my heart and my mind to my spiritual beliefs there will be comfort. The book is "The Shack". It is the story of a man who suffered great loss (of a child) and how he came to deal with that loss through healing his relationship with God. I did not find it to be preachy, but rather full of hope and love (and a good dose of humor, too).

If you feel there is anything else I can offer you, please send me a message. Best wishes to you.

Oh, Alica, I am so sorry. This is the toughest reality. You have a healthy son, a needy infant, and a death to cope with -- all at once. And, yes, it's been 9 months, but don't be too hard on yourself. It takes a long time to get over a loss, and when we lose babies, there is a part of us that dies and aches forever. Yes, we get to the point where it isn't all consuming grief, but we do still ache. We can come up with all kinds of dumb things to say, and "ways to think" so that we convince ourselves it shouldn't hurt anymore, but it does hurt, and that's the reality of life. You might want to call (or have a friend call, if you don't think you're up to it) the funeral director in your town and ask if s/he has any knowledge of suppport groups for grieving parents. Talking about it does help, and being with other people who share the same kind of pain is also helpful -- you don't feel like an oddball, and it feels safer to cry with people who are also crying. It's okay.

And then there's the little one to deal with. And how tough is it to try to share the wonder of discovery with your 2 yr old when inside you are worrying about your baby, and dealing with your loss, too? I really hope you have family and friends who can help you to get some "me-time" so you can recharge your own batteries and coping skills. And, again, I'm wondering about connecting with other moms who are dealing with preemies and the struggles that go with the divided life you must be living, between the hospital and home. They may have a group at the hospital, and the nurses there would know. Generally the medical staff in the NICU ought to have knowledge of that kind of thing, and if not, the social services people might. There is nothing like the community you get from finding other people (in the flesh, although online is better than nothing) who are walking almost in your shoes. You can tag-team for each other, babysitting each others' kids while you take turns at the hospital, and you can share coping strategies, and learn from each other.

You are so very right when you say this is just hard. And even at that, I suspect you are understating the difficulties. I had healthy kids, and worked FT, and even then at times wanted to give up cuz I didn't know how to cope. You have two very very difficult things to cope with, both of which are more long term than any of what I now, in retrospect, consider temporary crises I had to cope with. My guess is that you are doing a very good job of it -- the problem is that it is incredibly difficult, horribly draining, and always challenging. Sometimes keeping a journal and writing down each day's struggles is helpful. You get it out and it may make you cry to do it, but it'll get some of it "out there" instead of inside you. Beyond that, you really need a caring network of people who will listen to your stories and needs, and share their own, so together you can gain strength and continue to cope.

In our area, (Erie), I might check in with the Barber Center, because while I doubt they deal with infants as young as yours (I really don't know), they do know the networks, and might be able to steer you to a network of people, and the social services whose assistance would bring make your life easier.

I'm glad you wrote. I know there's a bunch of moms out there who read your post and whose hearts immediately reached out and wished they could hug you.

Which reminds me -- do you have a church relationship? I go to a really neat church, and I must get about 50-100 hugs every Sunday. It's great therapy ! And in a church, there would be people who will pray for you and your family, and would want to help. It takes a bit of time to get acquainted and to make friends, but just ask God to send you to the one where he's planted the people who have the giftedness to love and support you. (I know this sounds wierd -- it's my mom speaking through me, I swear. She lived her life this way -- and it WORKED. Her husband died when he was 31, and she coped with 3 little kids, had to start working FT instead of staying home, and she didn't just survive. She thrived, and at 85, she's still thriving. She just tells God what she needs and then looks around until she sees his answer. The key, I think, is to LOOK, rather than hide and assume the answer will find you.)

Take care. I'm sending this with a hug.

barb

Hi A.,

I, too, went through a similar situation three years ago. I had a two year old boy and was pregnant with twins. At 29 weeks, I started having some problems and went to the hospital to see what was going on. Not thinking it was anything serious, I was devastated to learn my little girl had passed away. I was rushed to a Pittsburgh hospital where they were trying to decide what to do. They wanted to wait as long as possible, as my little boy's lungs were not developed. Unfortunately, we couldn't wait. They were unsure what infections may be in the womb as my little girl had passed a few weeks prior - we just never knew. So, they took me for an emergency c-section.

My little girl was stillborn, and my little boy was born with many issues. His lungs were in bad shape. For the next few days, it was touch and go. We didn't know if he would make it. His lungs collapsed; he got an infection; he had a very rough time. We saw him nearly die in front of us two different times. Thankfully, he made it - he was in the hospital's NICU for 56 days.

However, we were given worst case scenarios for his future. Unbelievably, he has been a trooper. He had physical therapy for the first two years, and then, he began speech therapy which he still has. If you haven't heard about these free programs - I would strongly recommend them - Early Intervention is the program name. They will evaluate your baby to see what areas extra help is needed. Then, a therapist is assigned to you and comes to your home weekly to work with your baby.

To see my son today, you would never know what he went through. When I look at him - I am so thankful and feel so blessed. We call him our miracle baby. Because, to us, he is just that. He has come a long way - and we are so thankful to God for bringing him into our lives. He has taught us to never take anything - including a single day - for granted. He has taught us to be patient and have faith always.

Dealing with losing my little girl unfortunately has not gotten easier. She is always in my thoughts. I want my son to know he had a twin sister, so we visit her grave, take her balloons on their birthday and decorate her grave for different holidays. He is still a bit young to understand it all - but someday he will.

When it happened, I constantly questioned why and how could this have happened? However, some wise people told me I should not question why - but instead understand there is a reason that is greater than I could ever know - someday I will know - but for now, I need to be thankful for what I do have. I agree with this - but I also know that unless you have ever lost a child, I don't believe you can truly understand the pain and sorrow you face. I was invited to go to some empty arms support groups - but I never did. I have always had a hard time talking about it. I do know some mothers who have gone and it has really helped them. I think it just depends on you and your personality. I do not live in Johnstown - I have family there who forwarded me your request. So, I don't know if there are such support groups or not - but you may want to check into it.

As for my other son - who was 2 years old at the time - it was difficult. Everyday, we traveled an hour and a half to Pittsburgh to see our baby. We would play with our son until the afternoon when he napped and then start our trip. Thankfully, our family was very supportive and was here for him. But, some evenings - depending on how things were at the hospital - we would not get home before our other son was in bed. I know this took a toll on him. But, he was good about it. I think kids are amazing - they have an intuitive mind that tells them when things aren't right. He was always very good about it. But, to this day - he is very needy and wants to be with us all the time - at play time, etc. I feel this stems back to that time when we weren't there all the time. But, he is doing well now that he is in Kindergarten.

He loves his brother dearly and is beginning to understand about the sister he lost. Unfortunately, it is still hard for him to comprehend because he was only 2 years old when it all happened. The best advice I can give to you about your son is to include him in everything. If possible, when you travel with your daughter - set aside another time to take your son somewhere special. I don't know if your daughter can be left with anyone or not - our son was on oxygen and monitors when he came home - so we were not comfortable leaving him with anyone but us. So, we took turns taking our older son places. We had special "him" time. I do agree with you - it is so, so hard. But, it sounds like you are doing everything you can for both of your children. And, you should be commended.

Please do not give up hope and faith - it truly pulled me through the worst days. Since this happened to me, I have met some other people that have also gone through similar situations. I try to be supportive and offer what I can to let them know that you will make it. You will have good and bad days - but eventually, the good days will outnumber the bad days. While you will never forget your little girl, your other children will fill your life with so much joy and comfort. Sometimes, I look at my little boy and just smile because I know he has a little sister - he calls her an angel - watching over him and all of us. Someday, we will all meet again - but until then, God has me on this earth to be the best mother I can be to my two children.

I hope I have been a little helpful to you - please feel free to ask me anything. I will be happy to tell you anything that may help you. I know what you are going through - and it will get better. Best wishes always.

S.

I am so sorry for your loss. My second daughter was stillborn on June 2, 2004. It is a unique loss in some ways that not everyone understands. I know for my husband and me the Postpartum Stress Center www.postpartumstress.com helped us through the grief process and beyond as we had our third child. They have services dedicated specifically to miscarriage, stillborn and neonatal loss. It has taken a long time to heal, but we are a strong, close, happy family. Our second daughter has had a profound effect on our family and is a special part of us. My best advice is to surround yourself with supportive people (professionals, friends and family), and give yourself all the time you need to talk about your baby and to begin to process your emotions. My heart goes out to you. What is your daughter's name? I'll keep you and her in my thoughts.

Hi A.,

I can not fully understand what you are feeling nor how for you to handle the situation, but I do know what it is like to lose a daughter that was stillborn. I myself have experienced it, so I feel your pain. It has been 11 years since Kaitlyn died and, to be honest, I still shed tears for her once in a while. I still think of her often. Of course it does get easier throughout the years. Now it is mainly around her birth/death date or if I hear of someone going through the loss of a child. I do not know how I would have handled the situation you have with you having to take care of you daughter and son while grieving. You need to have time to grieve. That is the main way to heal.

I agree with the person that posted before me about you finding a support group. They can be very helpful. You also NEED some "you time". I'm sure you don't get much of it with a 2 year old boy and 9 month old girl that takes all your time. Even if it is for a short drive somewhere to park your car and sit. Just to be away a little where you are not the one in control for a little. It is amazing what that can do for you emotionally.

It sounds like you want to make sure your son has quality time with both you and your husband. Maybe each of you could have a day each month out with him. Make it something your son would really enjoy so it is special to him.

If there is family or close friends close by, maybe they could watch your daughter for a few hours each month so you both can spend the time focusing on your son.

You will be in my thoughts and prayers.

{{{HUGS}}}
L.

Dear A., My heart goes out to you. Our family went through a simlar situation last Deceomber (08). My SIL lost one twin and then had the other at 29 weeks. A book that was recommened to me was: We were going to have a baby but had an Angel instead. It is a children's book, but it helps parents suffering from loss as well. Our niece weighed in just under 2 lbs at birth and is now 14 months old and even though she is still on the "small" size for her "age" she is doing just fine. There are lots of challenges, but we work to focus on her triumphs not the struggle. Somehow I know that she will "catch-up" when she is ready. I have another nephew that was over 6 weeks pre-mature and he "caught-up" developmentally by the time he was two. Hang in there and make sure to take the time you and your husband need to talk to someone about what your heart is going through. Best wishes.

I am very sorry for the loss of your child. I can't imagine how difficult.
Nine months is NO time at all in the grief cycle. Please be gentle and know that it is normal to grieve in your own time. Having a child with their own difficulties slows down the process of grief a little as your distracted from your own feelings.

I would suggest finding a support group that will have a good understanding of exactly what your going through.
There are several mothers who have lost children at
www.mothering.com/discussions in the grief forum. It may not be targeted to your specific needs but there are others there who share their losses of their children.

Peace be with you.

I just wanted to tell you that i am so very sorry for you loss. You are in my prayers.

A. - I am so sorry for the loss of your child. My son passed away when he was 17 days old. It will be 8 years ago next month. What I can tell you is that although the pain never goes away, with time you do get better at coping with it. I hope that you can be patient with yourself. Your loss is still so fresh, 9 months is hardly time to fully grieve and I am betting you really haven't had the time since you are busy trying to be a good mom to your other children. Mean while you are also struggling with health issues of your little girl and you're trying to be there for your son who is still practically a baby himself. That can be overwhelming in it self. You definitely need a good support system. It helped me greatly during the first year to talk with other mothers who lost their infants and were eventually able to make a good life for themselves and their families. It also made me feel not quite so alone. Although others can and do sympathize with you I think it is difficult to fully comprehend the loss until you have walked in those shoes. If you ever want to talk please send me a private message. I will keep you and your family in my prayers.

A. i am so sorry to hear about the loss of your child. I will be praying for you. Seek comfort in your heavenly father. He knows your pain and he is carrrying you. See the lord through scripture and through a support group. You will be in my prayers. In christ C.

First of all I am so sorry to hear about all you have gone through. I have three children ages 5 1/2, 4 and 1 month. Our youngest was born in January and has Down Syndrome. We didn't have any of the testing done so we were surprised to find out he had Downs. That being said we too have had lots of doctor's appointments and although we haven't said anything to the children they are aware that things are different. I don't know if you live in NJ but our peds put us in touch with Early Intervention and it has been great if you are in the state and want to know more about it email me and I will send you all of the info. Good Luck.

A., I am so sorry for your loss. I went through the same thing. I had to deliver my son when I was six months pregnant. He was only 11 ounces. I can only say that I know how you feel. I will keep you in prayer, and that is what got me through as well as being surounded with family. I actually prefered being alone to grieve in my own way, but eventually it got better. You have a lot on your plate at this point because you have other children to keep you going. I would say to turn to them and put al of your energy and heart into the blessings that are here. I still remember and pray for my little one even though I know he is in a better place. I never forget him, but at the same time I have 2 other children now and they keep me going. As for your daughter who is in the hospital, my prayers go out to her, she is a blessing in itself. Stay strong and stay in prayer, it really does help.

Sincerely

M. G.

Hi A.,

Get in touch with a grief and loss support group for mom's who have lost a child. Ask at the hospital you go to for support group information.

Go to your local social service agency and ask them for help with your disabled child.

Good luck. All the best. D.