Everest

Nothing is easy.

So the pediatrician had also been wondering if she was seeing ‘something’ with Obi. When I told Hubs I thought there may be something up, he poo-poo’d me. But at the appointment when we were discussing the milestones she hasn’t hit (all of them) he mentioned that I thought she may have a chromosomal issue.

Apparently the doc had been wondering too. She pointed out the facial features she had been mentally keeping track of, unable to decide if it’s just how she looks or if they were soft markers. Add that to the tiny size both in utero, and now, some other issues related to feeding, sleeping, and her physicality and she has enough to be concerned.

We’ve now been officially referred to Genetics at Sick Kids. It may be nothing. But mothers intuition tells me it is not nothing. Something is up.

I didn’t want to be right about making a mountain out of her missing milestones. I wanted the doctor to tell me I was crazy. Though I knew, deep down, I was not.

Now the mountain has turned into Everest and I have no guide, not equipment, no sherpa to help bear the weight of this burden. Not even enough oxygen.

Could be nothing. But it’s going to be a long uphill climb to find out either way. If it is something, I have a whole lifetime of advocating, fiercely protecting, championing and reminding the world how perfect she is.

Today though, I’m very sad that she may not be the ‘perfect’ I wanted for her. Very sad indeed.

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7 Comments

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7 responses to “Everest

  1. Anonymous

    I’m so sorry that you’re struggling with this. I know you will continue to handle it with the grace and strength you’ve always demonstrated. Hang in there and know that we are all thinking of you, your family, and especially OB.

  2. Kristen

    Hi there – I started following your blog when you were trying for your first baby…I was in the same boat…doing everything possible to have a baby. Then the twins came and I couldn’t keep up with all of the women who helped me through that time. I just started checking in with my favorite blogs and found this post. Our daughter brought us to Everest, for sure. Her exact genetic issue may never be discovered, but due to her severe delays, something is surely not typical. If I could offer some ideas to you as someone who knows the path you are on, I hope I could help you just as you helped me. So here goes: ask your pediatrician about getting started with the early intervention program in your county. The appt with the genetic docs and the return of the blood tests can take a while, so getting these therapies started is very helpful. The therapists come to your home to help assess any delays and then begin a therapy program. It’s great to have someone to talk with and you can bring that info to the docs. Also, the genetic doctors are an interesting group… very scientific, not so strong with the people skills! And just one of the things our girl teaches me everyday is that I am much stronger than I ever thought I could be. She is my light. I hope things work out and everything turns out fine, but also know that there’s an army of moms out here ready to help.

  3. I’m so, so sorry. I really hope that you get some good news from the genetics guys. Xxx

  4. Brooke Giallombardo

    I am so sorry. No parent ever wants to consider that their child is not “perfect”. I know you love her as much as humanly possible, though, and I know she knows it too.

  5. Good luck with the appointment. I hope you get clear answers very soon. I would think the not knowing is the hardest part. Thinking of you and hoping for the best.

  6. How devastating to think there’s something wrong that can’t be fixed. And as the previous comment said, the not knowing exactly what’s going on and what it means for her or for you yet. I’m hoping you get definitive answers quickly so you can start figuring things out.

  7. Magsy

    Thinking of you and Obi. I am so sorry you are going through this.

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