Dealing with some tough stuff with a fellow mom

[momof3anddog]

I think I might actually be able to write this and send it through; Spent a little while trying to figure out how to make a new thread -- as I haven't done it in so long I forgot how. Replying to others, sometimes I do that. Anyways -- here it goes. Typing/Writing out what I am thinking or how I am feeling - helps me to put in perspective what I am going through. Maybe some of you wiser women than me can help me to figure out exactly where I am right now and what I can do differently if anything for my fellow mom friend as well as me. So sorry for the rambling ahead of time. I'll try to cut a lot of the words before I post this thread...

I belong to a group of motherhood that I wish no one ever had to experience -- losing children because they are born before their time to be born or born way too early, and with on-going problems as a result of this. I have had 3 pregnancies and 4 children. Only 3 are alive. The last pregnancy of twins was particularly traumatic for me because I was put on bedrest at 11 weeks and then again 2 weeks later with twins due to massive hemorraghing. I was not expected to make it to viable children as I was so early in my pregnancy. At 41-years-old, I knew that these babies were my last hope at having a second child in my life. It was my last hope of my daughter having a sibling to go through life with her. So I shut down my brain and laid on my side like they said, for 17 weeks longer. Then labor started and after 4 days could not be slowed down or stopped any longer. They were born very small, no bigger aluminum pop can and weighing a little over 2 lbs a piece. I was repeatedly told over and over, that they were amazing little boys, as they were doing better than expected, and that someday I would walk out of Children's Minneapolis, maybe with both, but probably with at least one. I looked at those little boys, one with a thatch of brown hair just like mine, and one with wavy kinky blond hair like no one I know in my family, and didn't truly believe it. I wasn't sure I could believe it, as over the 9 weeks my boys were there, I saw so many other parents leave without their child as he or she had died. It was hard for me, coming every day to that hospital to hold them and fed them the breast milk that I had pumped. I was beginning to fall in love with them, like most mothers of children do, and I was falling harder and harder. What if one of them or both didn't make it? I did not think I could bear it as they grew stronger and bigger and made that "normal" progression from alien fetuses to little monkey babies to regular little boy babies that premature infants do if they are doing well. I was starting to grow a seed of hope that maybe I would be one of the "lucky ones" and maybe have two little boys to take home some day. Part of that "hope" was generated by my talking with another mother. Her son was full-term but born with Down's syndrome and heart issues. He had many problems because of the condition of his heart. So he was there for as long as mine, growing stronger, and stronger. Even though our boys grew stronger and stronger, and they put us in different parts of the hospital fairly quickly for those 9 weeks, we still stayed in touch by meeting for coffee, phone calls, whatever. We also as our babies grew older, ran into each other frequently at various times in the community as various specialists for our children. It was odd, because I think the timing of that, had to be divine intervention. She found out her son had a serious hearing impairment, was really having difficulty accepting that along with everything else that was going on with her son, and we happened to drive our vans into the parking lot of the same ENT for appointments at the same time. Her for her son, me for me as I am going deaf myself and have been for years as a result of childhood spinal meningitis. Also once in the summer of 2010, I was walking through floor 8 of children's MPLS looking for a cup of coffee. I was only there because one of my then 9-month-old twins was admitted for a viral cold that collapsed his lungs in 24 hours. Who should be walking the other way, but my friend. Her son was also there dealing with the same viral cold hitting him hard because of the condition of his heart. Winter 2011, same thing. We were both in the hospital again, me with the other twin, her with her son, for RSV.

I could go on and on about my friend, and how we just end up running into each other so, so often, when we are really not planning on it, but on our last bit of human strength and fading hope for our boys to ever be like anyone else's children. I could write forever and ever about what my friend means to me. I could. But I won't. Here is my delemma, here is the part I need help from some wiser mothers on this board than me. My sons, although certainly not your average 3-year-olds, as they have lung issues that will probably be there for the rest of their lives due to their prematurity, are getting much stronger. My friend's son, however, is probably getting weaker. Just before Christmas she called me in a panic about a relatively minor surgery, that her son was going to have. He needed to have it to grow stronger, but her fear, he just woudn't make it and she didn't know if she could handle it if he didn't. Well miracle, of miracles, he made it. My petition to my God, had been please keep him alive through the Christmas, as I do not want her to to plan a funeral over the holidays. I lost my own mother over the holidays when I was 20 years old. And as much as you don't want it to color your perspective of the holidays. It does. Even this many years later, I still have a touch of sadness about what might have been if she were still here. I didn't want that for my friend, as I would imagine that losing a child over the holidays is much, much worse.

Yesterday, I left at 5:15 AM in the morning to go spend the day at Children's with her and her son. He was back there again as he had a planned minor surgery to deal with some issues again. For anyone but him it would be a minor surgery. Again she was afraid that she might be forced into letting go of him if he did not make it. She did not want to be alone if that happened. So I said I'd be there with her -- just in case it went that way. We mothers of medically fragile children just know that part of our being our child's mother.

I am am now on the pheripheral edges of belonging to the group of mothers of medically fragile children. I'm hoping that continues. It very well could for me. But my friend is not. She is getting physically and spiritually to the core of her being tired from taking care of her son and her son is also getting tired trying to live. I can tell. I have been there, my boys have been there in the past also, and she has magically just shown up when I needed her the most, as she is going through the same thing. So I hope I was that for her yesterday. I have no idea.

But if anyone has any experience with this and what more I can do or say, let me know. I am afraid for her. I am afraid for her son. I really, really am. I am moving out of that group -- but I don't think she is. I want to know what I could do other than what I just did. Because as I watch this from the sidelines, when I have been in middle of that game before, I feel very, very powerless.

[merrr]

Your post leaves me speachless...

You are a wonderful soul for being there for her and your babies as you have been.

Your last sentence of feeling powerless is so very true. You don't have the power to control the future or make your friend stronger or fix medical problems. What you DO have the power to do is to hold her hand, listen when she wants to talk, be there when she doesn't. YOU have the power of PRAYER as well.

(((HUGS)))

[laurac]

You are such an amazing friend. And it sounds to me like you are doing everything you can to help her.
I, too, am speechless.

God Bless you.

[dara1012]

Hugs to you and your friend.

Having been a caregiver for medically fragile adults for years it is so hard. I have one client in particular who has no family, lived in an institution prior to the group home I now supervise and has had significant medical concerns. It is so hard to watch someone who is struggling and to be that person who is their advocate with medical professionals and also the person who cares about them. As hard as it has been on this journey with her and my other clients, I can't even imagine how I would feel as a parent.

You might feel powerless and in some ways you are. But you have the power to let her know you care, by being with her, listening to her, praying for her. You are a wonderful person and a caring friend. I will pray for both your friend, her son and for you during this difficult time.

[doeeyedgirl]

What a wonderful, caring, strong person you are. It sounds like you and your support are the best thing for her during these times. Like you said, you have been there. You know how to sympathize and comfort and support her during times that some of us haven't had to experience. My heart aches for her and for any others that have to struggle through these times and virtually live on their love. Many prayers going out for her and her son during this time. And God bless you for being who you are for her as it sounds she has been for you.

[bumblebee23]

I totally agree with Merr on this one. You are doing an amazing job just being her friend. Given this is all medical there really is nothing you can do for her except be there and be her friend. Help her to laugh and be there when she needs a shoulder to cry on.

[ReneeW]

I echo what the ladies have said above. You being present for her, a shoulder to lean on, someone who "gets it," and a source of strength for her is a major gift and blessing. You may be underestimating how vital that is to her well being. And it's good for her to see you, her friend, being able to move on and perhaps out of that group of moms--it's hopeful for her to see that, even as she wishes she was there with you. So I say to keep on doing what you're doing as you're able, being a gift for her, while you can celebrate that your own kiddos are getting stronger and thriving.

[irish]

Wow. First of all, I commend you for being an outstanding friend to her. As these wise ladies mentioned above, you being there for her I'm sure means more to her than anything. I dont have any words of wisdom but I will keep you and her in my thoughts and prayers!

[onlyoneboy]

You bring tears to my eyes. I can only hope that someday I can be as good a friend to someone as you are to her.

Huggs for both of you.

[nevaehsmom327]

I'm with Merrr and LC. I'm speechless. Know I will be praying for that family. God bless all your precious and beautiful hearts.

[mommylinz]

Not the same, but a co-worker turned good friend lost her husband at a very young age. Her husband had similar health problems to my parents but we became very close due to that. We know that our experiences are very different, but she has always told me what she enjoys most is that even though I don't know exactly what she is going through, she can be honest with me and knows I won't judge her. She also says she hates that people avoid the loss of her husband and she just wants people to talk about him. Knowing your friend is not at this point, I'd say just being there and listening to her can mean a lot. Don't avoid the topic, ask how she is, ask how he is.

What is the hardest for me is having what my friend does not have anymore, every so often I feel like I put my foot in my mouth, but it happens and will continue to. She has become very important to me and we will always share a bond. I am just happy that I was able to meet her and her husband.

[momof3anddog]

Just talked to my friend today again. Her little one is finally maybe recovering from his last surgury that I was present for. It did not go smoothly this time (as it never does) but he is still here on this Earth. She reported to me that he started to play again for the first time and started to hold his favorite toy to his ears to hear music. So that is a "good sign" that he is enjoying his life again -- And maybe not in as much pain -- which was the whole point for her to go forward with the surgury in the first place. It's just really hard. I see how the surgeons look at her and her son when I am with her and I hear some of the things they say to her in a tone that doesn't have to be said. It is disheartening to me that a child with Down's doesn't get accorded the same respect/dignity or care or concern (or a parent of a child with Down's) as I do when I bring my 3-year-old twins who look "normal" albeit small on the surface to a specialist or surgeon. I get very disgusted by that. It is part of the reason I don't tell people that I am so hearing impaired when I first meet them. Even though I probably should if meeting whomever is in a "loud" place where it would be difficult for me to hear them. For me, it is like that as soon as tell someone that I am severely hearing impaired, my IQ goes down 20 points plus. Words are simplified or phrasing is used that wasn't before I told them. She gets the same treatment as does her son but right off the bat. I have seen it when I am with her or run into her whereever she is and I am for my own issues or my children's issues at hospitals and clinics. I think that in addition to her being bone-weary tired in body and spirit from all of this, it just bothers me that she has to deal with that too. I sincerely believe that all children, no matter what level of functioning or visibility of their disability -- should be treated with dignity and respect until they take their last living breath on this Earth. It sounds so basic -- but it's not to those of us who are mothers of the medically fragile. So I thank you for your support. Was feeling overwhelmed during the whole experience -- as again unless something changes for me and my little teeny-tiny wonder-twins, I am moving out of this group as they age and grow bigger and stronger. And although I am pleased for myself and my boys, like one of you said, there is a little bit of guilt that I have gotten two little miracles that keep thriving and growing stronger. She has not. However she is still one of my best friends through this whole thing and I hope I am to her. If something were to happen to one or both of my boys, or even my older daughter, she would be the one that would call. I knew that about her from her very soft "hello" to me at hospital when we both were standing with our hospital gowns on ( that you can't keep closed well) at our sons' incubators. Just that feeling of being a deer caught in the headlights that doesn't know what to do, faded away when she spoke to me. Truly she is a friend for me, sent from God above, during this time. I hope I can be for her too.

[aprilandy]

I am on the other side of your situation right now and struggling to support my friend who recently lost her medically fragile child -- the heart transplant did not arrive in time. Medical care/dignity and the value of a life are all weighed in the end for some children. My friend was not able to get on the transplant list at some hospitals due to the other medical issues--anticipated life span, intellect, etc. that were part of the life of her child. She devoted 18 years of her life 24/7 to the care of her son. At the end we prayed they would not amutate his purple limbs to save his life in the short run, we prayed together for peace. Through all the doctor visits, to transitioning to home school (as he was unable to attend regular school) she left her job and devoted her life to his care. Now she is heart broken and alone. I am working to be the best friend possible and help her through this difficult time, but as our connection was around our children and supporting each other with difficult issues I can see and feel that my presence intensifies her pain. When she sees me she sees our sons alive and together. I hope things will change as I love her dearly, but worry that my friendship hurts her even more as my son is still here. I am so sad and grieving myself over the loss of not just her son, but of a dear friend in so much pain.

[momof3anddog]

I hear your pain as that is one of my fears for later when her son doesn't make it if and when that happens -- as I know it is coming some day. I don't have a lot of friends as I really don't have time for the support that they need (which isn't fair to them) when I have so little support for myself. She and I are in the "same boat" right now but me lesser so. So we just sometimes know where each other is without talking and just when we are sitting with each other. I think you probably were/are that kind of friend to her through that time . She probably couldn't have survived it without you. This after part, it's even harder. As others move on and expect you to magically "get over it" at the speed they are. But your friend, she is going to need you someday. Maybe just to remember her son when others don't. Just to use his name when others are afraid to do that. She will. I know she will. Just right now, ask her what she needs and wants from you. She may not know or just have a lot of anger and grief right now (not at you but it might feel like it -- it's that she didn't get her miracle and you did). She just may need some space to cry and be alone. She might maybe need you to send her a short note or put a meal on her door and ring the doorbell and leave. But she may be able to tell you soon or some day soon what she needs. Keep checking on her. I sometimes feel like I am a pain to my friend too. As I will call her and she usually calls back right away or if something serious is going on -- will call a few days later. I start to imagine the worst happening when she doesn't call me back. Usually it is the worst happening but she is afraid to call me sometimes as she is afraid that I am going through the same thing or she is so in the midst of her son's on-going medical stuff and other family stuff that always continues for all of us -- as that stuff never seems to lessen while you are doing all this for your medically fragile child. The loss of a child, I have only experienced it in terms of a later miscarriage which was devastating to me, as I wasn't sure about my capacity to have children so late in life. But it still hurt. Otherwise loss of children has been from watching other's children not make it -- which I have seen a lot of being in Children's Hospital with my boys and as a CPS Investigator before that although that was only until about 2 years after my daughter was born. But it was still very painful to see over and over. So this, what your friend is going through, a child that you have cared for devotedly and he still dies, It is life-path altering. I can understand where she is numb right now and in a lot of pain. I just can on some levels. I wish you and your friend calmness of spirit through this painful journey. I do. Probably more of us on this site have been there in one way or another. It's just hard to talk about sometimes.