i am at a REALLY low point. NO ONE gets what I am feeling and that is so hard. We are supposed to be pillars for our friends in their time of need. That is what "they" say and it is just going to take every ounce of strength that I have. The funeral is tomorrow...
You see, the thought of someday losing my Tobey is NEVER far from my mind. No, he has no real BIG medical issues right now or ongoing, but it is just ALWAYS there. I don't know. I guess when a world-renowned neurosurgeon tells you that your son will more than likely not make it through when he is born, it makes a bit of an impression...I know I know...I should look at him for the MIRACLE that he is, but sometimes it is just hard. I know almost NO ONE who is still alive who was opened up as high as Tobey was. All of the kids that I have known have died. One at age 5 and now Dylan at age 15. A thoracic level spina bifida kid should have breathing problems, kids with scoliosis as bad as Tobey's should have breathing problems. There are a whole HOST of things that Tobey should have that he does not. However, that does not keep me from wondering. Since he has made it through MANY major medical events, will it be something small that takes him? After all, RSV killed Kenny at age 5 and that is usually only dangerous to little ones...The intellectual side of me sees all of this as stupid and a HUGE waste of time and energy, but my heart just struggles. He has gotten through so much, but the reality for him is that it is FAR from over...There are other things to deal with and I just take each one as it arises as that is ALL that I know how to do...
I LOVE that boy with every ounce of my being. I have to say that I have done everything that I can think of to make sure that I would have no regrets if something did happen to him. It is just something that I will always have to deal with and times like this make it feel so much worse.
So, I will gather myself up tomorrow and go to Dylan's funeral. I will send my spina bifida child off to school as he has still stayed fast in his wish to NOT attend and I WILL respect that. I will be the pillar that I SHOULD be for Leslie and then will probably cry like a baby all the way home. We always find somewhere to gather up the strength, right? Then, I will call my dear friend is who is dealing with the uncertainty of what lies ahead. Jamie, I will cry right along with you as I just see this as COMPLETELY unfair...
If you read this far, thanks for just reading. It means so much to know that there is someone out there....
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4 comments:
Dearest Jenn...
I can't imagine the storm of emotions you are feeling today... the sorrow for your friend and the inner fears you feel for your own son's future. I believe I love Tobey, too, from all the things you've shared with me and from the many pictures I've been blessed to view! That smile! That beautiful spirit he possesses never fails to shine through to me!
How I dearly wish I could be there for you -- in person -- to share this day and to comfort YOU as you comfort Leslie. You are an awesome friend, to be there for her, and I'll be praying for you all day, that God will lift you up and meet your needs, as you meet hers.
Much love & hugs,
Lisa
Jenn, I am sorry you are going through this. I am guessing, since this has happened with me, that you still have some post traumatic stress over being told that your son would not/may not make it when you were pregnant or early in his infancy.
I got this news on Feb. 1, 2006 and the devastation still has not totally lifted despite the fact my son is alive and doing ok now. There are the surgeries to get through, the uncertainty of how his life will be, how quickly it will be taken and so forth. Anytime there is another diagnosis or even hearing about another child with the same condition not making it, the fear is THERE. It's maybe not real to what is actually happening to your own child, but certainly no less powerful for being false, if it is.
Rationally we can say that our kids could have something bad happen to them at any time. One could be perfectly healthy and get hit by a car, etc. And yet, when we as moms are told: Your son will not make it, he will probably die, IT NEVER GOES AWAY and the fear remains forever.
Just wanted to add that I'm glad you're respecting Tobey's wishes and hope is doing ok.
Oh Jenn.... {{{{{{hugs}}}}}}} Your post made me cry. :o( Tobey is a very lucky boy to have such a wonderful momma & vice versa. What a very special & amazing boy he is. A true fighter indeed!! I do feel your sadness and what might lie ahead for Tobey. It's hard not to, I mean it is reality.
I just found out my friend's 15 yr old daughter died in a boating accident last month. Now that I have a daughter, I worry about freak accidents and even illnesses that could take away my daughter. I try to remember that I have to live for the present and cherish every precious moment that I have with my daughter, and the fact that I have no control over what could possibly happen in the future.
But I understand your worries with Tobey and the death of Dylan. It really hits home. {{{hugs}}}
You are my pillar. I think of you daily and wonder how you are...how you get up every morning, how you go to work, how you raise 5 children on your own. You are my hero! I have cherished my friendship with you from the beginning. You have been there as only a true friend would. I cannot imagine being in your shoes. I didn't even send out Christmas cards this year because I have ONE new baby. Then I got your letter...man, am I a bad mom, or what??? You are one of the best moms I know. Your sentiments are shared as I think of you and yours as family. Hold tight to Tobey, to his happiness that YOU provide, to the fact that you have and continue to do everything with his best interest at heart. I love you!
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