We had a doctor's appointment today (one of many in the upcoming weeks). The appointments have been spaced by 2 weeks and this is only the second 'regular' appointment so I am still learning what to expect and how to handle all the information. The challenging part is that in between appointments, although I am constantly thinking about this little guy (who seems to be doing non-stop flips in my bladder region!) and all the challenges he may face, I am busy enough with life that spina bifida isn't as doom and gloom as it once seemed in my eyes. Our life has gone on since Diagnosis day and with some education and information on SB, the outlook isn't as terrifying as we had once viewed it, but when appointment time comes, it is back to the reality that this baby's spine is not formed correctly and he could have some major health complications that he has to deal with. It is a chilling and emotional alarm clock to wake me back up to reality. Today on the ultrasound, his ventricles had increased to 19 and 16 mm, up from 11 and 14 mm. That is so small and minute that it is mind boggling how much it shook me. I guess, I was in more denial than I had thought. I talk a big game when discussing our little guy with everyone, like I am fine and I am calm and feel good about what the prognosis is and will be able to deal with whatever we need to, but today when those little millimeters had increased, I felt myself losing it. I was still hanging onto some type of ridiculous hope that everything was fine and his symptoms were going to be minimal and surgeries, like shunts, might not be necessary. For some reason though, with the increase in those darn ventricles, it was like my reality check that this is in fact happening and it might not be a best case scenario for him/us. Which leads me to even more emotions. I feel guilt for being scared of the future. This isn't about me, it is about our darling little boy and HIS life and HIS challenges. The fact that it scares me and I am fearful of how to parent a baby that will need me to be more than I have ever had to be, makes me feel selfish. The number of times I have used the pronoun I in this post is worrisome to me. A good parent does not make their children's problems about themselves. They put their kids first without a thought....Can I do that correctly? I can't even fully accept yet what his diagnosis might be. I am being unrealistically optimistic and that probably isn't a good start to being the mom he needs.
One of the wonderful moms in a spina bifida parent group had a great quote. 'Having a child with disabilities does not require a strong parent, it creates one.' I like that a lot and am hoping that it is true.
Another little anecdote that I have fixated onto is a metaphor about grieving: Having a baby with special needs is like planning a vacation. You have been planning a vacation to Italy. You bought books, read up on all the hot spots and cool things to do. You may have even already been to Italy and loved it so much that you are feeling ready and excited to expand on your last trip. You are very prepared and excited with images in your head of how much fun you will have and the memories you will make. You get on the plane, but it takes you to Holland. You didn't plan for this, you are now stuck in Holland and there is nothing you can do. You aren't prepared and you are wishing you had been able to go to Italy. You are hearing from your friends and those around you how much fun they had or are having in Italy. They are posting pictures of being in Italy and are having the time of their life doing strictly Italian things that you can't do or find in Holland. You are happy for them, but you are sad to not be in Italy. The problem is that Holland is also beautiful, but in ways you don't know about because you weren't prepared. It is ok to be sad about missing Italy, but if you spend too much time grieving the missed trip, you won't be able to see the beauty in Holland. Don't miss what's around you b/c you are held up on what you had in mind. Holland will have it's own beauty and memories that you can't even imagine.
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