Sad for my kids...

Melanie, thank you first for telling your story. Nothing can be more true than the old expression about not really knowing a person until you've walked a mile in their shoes. My wife has been battling the effects of Multiple Sclerosis for the past 20 years. She too is a nurse and is perhaps more capable than most of being able to handle the situation. She is the strongest woman I know. I think about this all the time. Have we passed on this disease to our children, our grandchildren? We don't know. Perhaps we never will. But yes, things do happen for a reason, and sometimes our ability to handle the situations makes a profound effect on our lives and the lives of others around us. What your children gain from you is a positive outlook on life, a depth of love, compasion and respect for everyone they meet, and the strength to decide that they are going to live their lives to the fullest. We all want the best for our children, and it often turns out that the "best" really means that we as parents are there for them, no matter what. No one can say what the future holds for any of us. But when I think that perhaps something is impossible, I keep looking to this picture for inspiration. Paul Martin comes from the town next to mine and his story is enough to bring tears to your eyes. He recently completed an Ironman in world record time for an amputee.

Remember, it's not what your children are capable of doing that really counts...it's what they THINK they are capable of doing. That's the part they learn from you.



Edited by max 2005-08-08 7:25 AM






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Melanie, I feel for you and your precious little girls. My best friend's youngest daughter has a trachea problem also. She is 10 years old now and a very active little girl. She plays tennis and basketball and loves to swim. She has asthma and is still highly susceptible to respiratory illness, but she is well managed. My own daughter has Selective iga Deficiency and asthma/ allergies/ecxema. She is highly susceptible to respiratory and digestive track illness. She is also an excellent athlete. The best thing I ever did for her was to start her swimming at the tender age of 3. The last time she had her lung function tests, she was at 105% during an asthma episode. Don't rule out an active lifestyle for your little girls just yet. The human body is quite miraculous and lots can change as they grow older! Best wishes to baby Claire. You and your girls will be in my thoughts and prayers.

A good friend of mine has a daughter with a very similar problem. She is now in her early 30's with two girls of her own and a career as a teacher. I remember all they went through with her when she was a baby and I knew there were many times when they were saddened by her plight but things just kept getting better. I pray the same for you and your children.

You *can* handle this, one day at a time. An NICU nurse is an amazing person and I would not have my boys without them. An NICU nurse held me when my son died. A NICU nurse told me to "deal with it" in a loving way when I looked at Herne and was not sure I could bring him home because of O2 and monitor and the A's and B's he had (sorry to speak NICU but Colomingle will know what it means).

You are special and your example will be wonderful to your children.

One step, one day, one moment at a time and you can make it. You can do this. I know how hard it is to have children with "issues" but I also believe, with all of my heart, that God would not have gifted you with these wonderful children if you were not the best Mommy for them. Is it easy? No, the painful and frustrating round of doctors appointments and watching you child hurt test you in ways no other thing ever could. Some days are pretty dark and horrible and some days are filled with sunshine.

Your exercise is going to be an outlet for your stress and strain and keep you mentally fit for the challanges to come. You will have days when you think "poor me" and that is 100% fine! It's Ok to cry and hurt and think "why me?". We all do it and permission is not required.

Lean on your support system, in real life and online. There are people who will not understand your situation but do have the pain of a child with physical and mental challanges and will understand your pain, joy and frustraion. There are days that I get frustrated and want to go in a corner and scream but they pass and then I look at my Steven and it is OK (Steven and Herne have ongoing issues).

This is not your fault! I know how easy it is to beat yourself up about that and wonder "what if?" You did not cause this and could not have known. I remember sitting in the NICU while Hernie-Roo faught for his life. He had to recieve blow bys 8 times in 3 hours one day. It was awful and I blamed myself and somedays I got mad at Gene for even getting me pregnant (never mind that I wanted to be pregnant, there was a lot of tunnel vision in the early days). We got through it and I still have days when Herne is limited in some way that I just wonder if I was the most selfish person on the planet for getting pregnant with him? Then he dances and tries to sing and I know that he has something precious to offer this world and that I cannot stand in the way of that and what can I do to make him be the best Hernie-Roo he can be?

I know that what I am going through is not what you are going through but I am here and I do care.

Thank you for all your kind and encouraging words.  They really meant a lot to me. It helped remind me that my kids will have a future with all kinds of athletics...just maybe not what I imagined for them. 

I am still dealing with a lot guilt.  I know it's irrational, but it's there. Nancy, I think you understand that.  Today, during my great run, I actually got angry and shed a few tears.  How could I be so healthy and pass on some mutant, F'ed-up gene to my children. Why do they have to deal with that and I don't?  Not an answer I am ever going to get.

All your words empowered me, to feel like I am in control of something. I am in control of the attitude I pass onto my girls regarding their issues. I can give them room to grow, explore, and reach the max of THEIR potential.  Thank you for reminding me what being a Mommy is about.  And for telling me success stories...I needed to hear them.

Last of all, Nancy, thank you for praising NICU nurses. Our job can be a tough one and it so nice to hear things like that from parents.  The day before I went into labor with Claire, the baby I was caring for died.  (He was a 24week, IUGR, triplet)  As I handed him to his parents, and took pictures of him, I remember thinking how blessed I was that my baby was full-term, healthy, and alive. I will remember that blessing.  Thank you for giving me another face and soul to my job.  I am so sorry for the loss of your baby and for the struggles you have had with your boys.

I'll keep you all posted on the girls, especially Claire, as I learn more.  To put a face with a name, I have attached a picture of her!

Oh she's gorgeous! And she is alive and smiling and happy and well loved and is going to grow into a beautiful young woman with passions and hobbies that might blow you away (even if they aren't athletics..)

We don;t have kids (yet) but we always joke and say God will probably send us a kid who, when we want to go on a backpacking trip for the summer, will ask to go to Band Camp...In our case, we just hope God sends us a child...I think one of the scariest things about parenting must be that feeling of not being in control anymore-- like, this little being is on her own in so many ways and there is nothing you can do-- and then the hard thing about parenting is dealing with the unexpected- the child with learning disabilities, the child who becomes an addict, the child who wears really scary outfits, or, in my parents' case, the child who turns out gay. Sure there is disappointment. And fear. And guilt. And anger. But that child is no less loved, and that child will find a place for herself in the world. This is sort of ranging off topic. But it sounds like your girls will be able to manage their conditions. And Claire and Julia are beautiful and you and your husband love them so much, I have no doubt your family will find ways to deal with this unexpected turn of events. It's not what you wanted, but it's what you have. Thanks for sharing your story, I will keep your girls in my prayers.

thanks guys for a bit of mom perspective