"Special" babies and children

[TreeLove]

Now of course, we all agree that ALL chidlren are special, but I'm talking about children w/ special needs. I hate the labels....
anyway, Gus and Emmet were born 2.5 months premature. They had Twin to Twin Transfusion Syndrome and weighed only 2.9 and 1.13 lbs. Emmet has had 2 surgeries (another up-coming heart surgery as soon as Feb). He has been to the ER 5 times, and hospitalizd 2x for just getting a cold. Every cold makes me nervous. A simple case of the "sniffles" could mean 3 days in the hospital.
Also, he tested out of Early Intervention shortly after his 2nd birthday. He was recently seen by Special Ed and they noticed several areas in which he was very delayed, that will most likely qualify him for services. He is several months behind his twin and I fret over him (silently) ALL THE TIME.
I STILL can't get the picture out of my mind as he lay DYING in his isolette nearly 4 year ago. I've said this before, but I feel like have PTDS. This time of year is particularly bad for me. This time 4 years ago is when the Dr told us that most likely 1 of our babies would die in utero and we would have to decided whether to have an emergency c-birth or "let the other one go" and deliver 2 still born babies. This stress went on from Mid Oct till my water broke at 25 weeks in Dec. The whole pg was "ruined" by Drs interventions, daily ulatra-sounds, COMPLETE bedrest, and a 30 day hospital stay, and CLASSICAL c-birth.
They truely are miracles, (Emmet is the SMALLEST baby in the world to ever survive open heart surgery)but sometimes I just can't be happy. I get filled with anger and sadness on days like today. I feel ripped-off and pissed that my baby has to have such a tough time. Simple tasks like drinking from a cup, have to be taught. He didn't learn to drink from a cup til well after his 3rd birthday! My 17 month old baby mastered it 2 months ago! I am filled w/ worry that Emmet will be teased at school for being SO small and LD. I want to protect him from EVERYTHING. I'm scared that he will hate his life when it becomes obvious to him that life is a much more of a challenge for him than his twin. He has already started to refuse to do things that keep him well, like eat high fat foods.

PLEASE tell me how stupid I'm being. I don't know why I worry about things so far in the future. Some days I just feel like I want off this crazy ride, ya know?

Is there anyone out there who has been to hell and back? Most days I AM thankful and have a VERY good outlook, but gray days like this bring me way down.

Thanks for letting me vent here.

[MCR]

You're not being stupid at all, you're being a Mom. The urge to wrap them in cotton wool and keep them home is a strong one. I have friends with babes who started out special but were lucky enough to catch up and now you can't tell. Kids can be cruel and teasing in the future may occur, theres no excuse for it in my opinion and it doesn't toughen them up and it isn't acceptable in any situation. Don't make worries for yourself, wait till he gets to school before you deal with the bullies. Don't be so hard on yourself, they are little miracles, hug them tight. Take care of yourself ((((hugs)))))

[queencarr]

treelove,
How I feel for you. I have a 30w preemie who is now 3 1/2. For the most part, he is at or above age at this point, but he has CP, some sensory issues, and a severe articulation disorder, meaning that he is very difficult to understand. It is a lot of work for him to do so many things we take for granted. I can totally relate to having to teach the most basic of things and worrying about the future, and all. He had a VSD, and we were expecting open heart surgery at 1 yr, but it healed on its own at 10m. We have struggled with the right balance of doing what we need to do to keep him healthy and develop appropriately, and going overboard. (Is there ever an overboard when it comes to your children?) For me, educating myself about his conditions, getting diagnoses and labels (they make working with schools MUCH easier and help me to locate info on the net, etc easier), and preparing myself for what lies ahead alleviates a lot of the helpless feeling.

I try not to give into it, but find that "allowed worrying" helps. To do it, you set aside say, 30 minutes, at a specific time each day week, whatever, to focus on your worries. Journalling is good, too. After the time limit is up, you stop. When the urge to worry comes up at other than appointed times, you tell yourself, I will deal with it at my worry time. It takes some practice, but it can help. And yes, there is post traumatic stress disorder from difficult preg, births, etc. It is also just simply the stress of a special needs child, in addition to to other responsibilities.

If you have respite care available, you might try it, even if you stay home and do something non child related. Also, there is a grief process that parents, esp. Mom's, go through when their children have special needs. If you have the option, counseling or at least a parent support group might be a good option for you. Contact the ARC in your area and they should be able to give you information, hopefully. The grief process basically involves accepting the "death" of the child, experience, etc. that you thought you were going to have, and a full acceptance. It is not linear, meaning that you can jump back and forth from the different stages, like denial, anger, acceptance. Different events can trigger regression in the grief process, too, like when you recognize that your child can't tie their shoes and the younger one can. You grieve all over for the child who can tie their shoes that you don't have. If that makes any sense.

Anyway, know that you are not alone, and that what you are feeling is very common. Finally, remember that while children can be cruel, they can also be the most understanding and forgiving of differences. I have found that children of all ages are much more patient and understanding of Jimmy than adults, and he truly is unaware of his disabilities. He knows that he is different, but so is the girl with brown hair instead if his blond. It's just not a big deal to him, because we make it not a big deal.

I hope that some of this may have helped you.

Carrie, Mom to Jimmy

[Rastamom]

(((((((Treelove & Emmet)))))))))

[TreeLove]

~~oh rastamom-HOW I'VE missed you!

[Becca]

Treelove honey, you are not stupid - you are one of the strongest, most beautiful mothers I have ever met.
Worring is part of motherhood, along with changing diapers and sleepless nights. Acknowledge your concerns, sort out in your mind which are real and which are the insane worries that plague most mothers - you know, that the blue pen ink your child has diligently scribbled all over their freshly bathed body will give them cancer 50yrs from now.
Journal, find counseling, talk to Emmet's doctors, whatever you can do to put your concerns into perspective. Find time each day to see the beauty and joy in each of your boys -it really helps.
Blessings, Becca

[Rastamom]

I've missed you, too! haven't seen you around much lately...

Have you been over to Utopia...we were all looking for you before Mothering re-opened.

[RileysMom]

Treelove,

I don't have any wise words for you, but I can comiserate. My Riley was born at 29 weeks this past July. she weighed 2 1/2 lbs. I had a wonderful, non intervention birth planned and ended up with tons of ultrasounds, CLASSIC emergency c section under general anesthesia, unable to breastfeed, etc......

I still have times where I am just so furious or depressed or discouraged. She is our first and I really want 1 or 2 more, but know now in advance that I'd have to have a csection....depressing. Know that there is a high probability of problem pregnancy and premature birth again.....discouraging.

I try to just focus on the joy of my little girl, but the negative feelings can be very overwhelming at times....

Carolyn
TX

[heartmama]

Treelove--

I wondered what you meant in your reply to my "Awesome Day" post in TAO by the message "From one heart mom to another..", and now I know what you meant!!

You have dealt with some stuff that we have been spared. I know that prematurity and severe developmental delays on top of your son's other issue's must magnify the complexity of every issue you face. I am amazed to read he is the smallest baby to ever survive heart surgery. That is increadible. At 8 pounds ds was the smallest baby I had ever seen have heart surgery, and I can't image what that must be like with a 1 pound preemie.

I can only share that everything you wrote in terms of your own frustration and pain sound totally normal. I have been there and still am there with much of this. I wish I could give you a BIG hug, because you really aren't alone, and you should never feel guilty or ashamed of your anger and frustration. I am going to ramble here and I hope it is of some help to you if I do...

For me, it was healing to get to a point where I could say "This was NOT FAIR, it is NOT okay with me that my child has suffered, and he DID NOT DESERVE IT." Saying that without looking over my shoulder with guilt for embracing such a statement has really helped. For years, it kept me very down when other parents felt healed by thoughts such as "This is all for a reason" and "These special children are created this way for special parents" Etc. For me, and my dh, there was NO REASON good enough to justify the horror we have seen our child go through just to survive. Handing over your baby to have his chest sawed open, his heart and lungs stopped, his blood drained out and into a bypass machine..essentially, inducing a controlled state of death...this was so traumatic for us that I still cannot dwell on the image of *my* child in that condition for more than a brief second without being overcome with anxiety and grief. We have done that 3 times and every time, having to accept the spector of my child in that state was so grueling and agonizing, I felt like my spirit was dying. My will was drained so totally, and on top of that, I had to force myself to keep up a vigil for ds, to see him through this, to face this with him, to never give in to the urge to run in horror from what was happening. I can never remember exactly how we got through some of the things we went through, it was never an conscious "reason", just an unconscious drive to keep ourselves available to ds at all times and do whatever we could to minimize the suffering he was going through.

I no longer believe that a higher power makes personal choices for our lives (such as giving a child a birth defect) and I don't believe in karma anymore (that this happened for a reason related to past issue's). Believing that way brought me endless grief. It heals others, but it did not help me.

I accept that my child has a birth defect, and that survival has hinged on a high degree of surgical intervention--and alot of pain, tears, and grief for all of us. However, I don't believe it is okay that this happens to children. It happens, but it isn't fair. Not to me. He deserved the healthy childhood I had, that his friends have. He did not get that, and I don't know why. I no longer look for a reason, because finally, I have accepted that there is no reason (in my opinion) that this happens. Beleiving that there is no specific reason why children suffer has made it easier for me to accept this as a part of human life that we must learn to survive so that we can enjoy all the good there is around us as well. This is a universe hinged on opposites...for everything there is an equal opposite. Light/dark, alone/together, good/evil, pain/contentment. I feel that suffering is a random force we must live with in order to enjoy it's opposite...happiness, and contentment. That some get a disproportionate share of suffering makes some sense to me given that others have increadible levels of good fortune. Yes, of course we do influence much of our lives through the choices we make. However, we are not always given a choice. A book that helped me form my thoughts on this issue was "When Bad Things Happen to Good People" by Rabbi Harold Kushner. He lost a child to Progeria (rapid aging disease), and while the book is best suited for someone with Jewish or Christian beliefs, it certainly helped me and I have no religious particulars. I would recommend it highly ( I listened to it on tape, read by the author).

Most of the time I don't dwell alot on all of this. We are grateful to have ds and to see him grow and thrive and discover things he enjoys in life. Still, it surprises me when my grief can surface. I was describing a particularly difficult experience we had during one surgery, to a friend I was having dinner with. Sudden the memory of it brought back a surge of grief, I lost my voice and tears were streaming down my face before I even knew it. I really was okay talking about it, but the grief is always there, because there is no escaping the pain we feel when we watch our child suffer. It is always one of the most visceral and painful experiences a parent goes through, and I accept that I might always carry grief that close to the surface.

It is also additionally complex to carry the priority of attachment parenting through an experience like this. Hospitals are run on a large degree of detachment. Detaching from the experience is how staff gets through the business of caring for sick babies, and on many occassions, a parent determined to stay focused on the needs of the baby and refuse to sacrafice contact or responsibility for the emotional needs of the baby is treading foreign and hostile waters. Attachment can threaten those who have detached, and defending my right to parent ds, regardless of where he was staying, was exhausting his first years.

I also have felt that there is a degree of post traumatic stress that parents experience after seeing their child in a suffering or near death condition. How can you not?? No car crash or attack by a robber could be more frightening than seeing your child in pain and being helpless to stop it. If those other experiences can induce post traumatic stress, of course this experience could.

I will shush now, I really wanted to get some of this off my chest because you are so NOT alone with how you feel about your son. I hope you will email me anytime

[e-mail]

Heartmama

[lil' love]

(((((((((Treelove))))))))))

((((((((((Emmet))))))))))))

I never knew you had such a hard time. I'm so sorry honey but please cheer up. You are a wonderful momma and Emmet is going to grow up knowing that you gave him the best care and most love EVER!!

He may be a little slower in learning and development but girl, he definitely has your strength and determination, which will help him deal with the other children in school.

Use today to reflect on what your baby has accomplished and smile with pride. Try not to look to far into the future because that is way to unpredictable. Even I get bummed out when i try to think to far ahend of myself. It feels like a great weight on my shoulders!

I miss you.

[dinomom]

...what everyone else said ...

and special hugs from me to you.

[TripkeHughes]

TreeLove
You are always welcome to share your thoughts here. Please do not critique yourself here, we want you to feel open to share anything. You and your family are most certianly in my prayers.

Although I don't feel qualified to comment, I hear your pain and it saddens me greatly to hear your heart hurting.

May you feel our love for you and your family today.