Two steps forward, one step back

A friend recently pointed me towards a blog that she thought I would like. The author is a mom of a special needs little girl. After reading it, my friend was right and I LOVED the blog. The woman writes a lot about her little girl and the challenges that come with having a special needs child.  One of her posts really just hit the nail on the head for me.

She basically says this

-Her world has been forever changed, and as much as she would like to get over it, she probably never will, it may get easier, but it’s always present

-There is a black spot on her heart. In this spot is where the dreams she had for this child have been laid to rest, every hope and dream had been buried there, and while new hopes and dreams have been planted on this spot they are much different ones.

-This whole thing is a learning process.

-Certain things trigger her mourning process all over again

-She knows she is selfish in her sadness, the sadness is pity for herself and the way she thinks things should have been.

Ummmm AMEN.

I probably (or definitely did) cry when I read this. These are exactly my feelings.

It has been a rough couple days around our place. A few days before Christmas Emmaus started having pretty frequent seizures again. She was only having a couple a week for probably the last 6weeks to two months. Then bam out of no where (or since she has grown so much I probably should have seen it coming) she started seizing a lot again. Not a TON, but still multiple types of seizures, multiple times a day. We have increased her meds, but it really takes around 2 weeks to get the level increased in her blood. So we have a bit to wait before we (hopefully) start seeing a decrease in seizure activity again.

Dan said today after her therapy that he needs to just throw aside all assumptions he has had about her development. She will do things when she does them and we need to be excited when she does them and not disappointed when she hasn’t.

It is hard because at first she was developmentally right on track. Then she was about a month behind, then two now around three. And as we see forward progress we then see regression with periods of increased seizures, sleepiness from meds, ect.

I maybe spent a good amount of time yesterday day dreaming about what it would be like if she was perfectly healthy. About the time we would spend doing normal baby things instead of the time we spend doing things that revolve around development and tsc. About how the “normal childhood illnesses” aka ear infections and colds would seem like a big deal to us. I heard my best friend mention that her daughter had an ear infection the other night when we were at a Christmas party.  She said it in a sad voice, and I could hear that it truly made her sad that her daughter was ‘sick’. Emmaus had an ear infection too. And I started to say something about it, but didn’t. I guess it just felt so inconsequential. Almost like “who cares”? That is the least of this kids problems.  A part of me just ached to feel like the ear infection was a big deal. Like it mattered. It is a normal mom thing to feel sad when your baby has an ear infection, or overwhelmed by giving your kid 4mls of ammoxicillian. To us the 4mls just added to our twice daily routine of 16mls, so no big deal, and the ear infection doesn't do much on a sadness scale either. 

I’m aware that Daydreaming about these sort of things is probably super unhealthy. But part of me can’t help it. Part of me can’t wonder what ‘normal’ would have looked like for us. I know there is no guarantee of normal. I work at a children’s hospital. I see kids affected by all types of problems. Car accidents that change the course of a kids life, infections, organ failure, ect ect. I know there are no guarantees and that ‘normal’ is a very rare case.

Like the mommy blogger I mentioned before a part of my heart has died. The hopes and dreams I had for my family are no longer what they were. And while I know new hopes and dreams will grow and replace the original ones it takes time for hope to sprout. This woman’s daughter is 7(I think). Mine is 6months.  It just takes time. And while I wait we will continue to take 2 steps forward and 1 step back. We will heal slowly, we will have good days and bad ones. I will be proud of what my baby girl accomplishes, and help show her how to do more. I will wake up trying to choose joy, and daydream about the ‘what if’ less. Trying to overcome this sadness about the way things should have been.

I know we have been chosen to parent this beautiful baby girl. I know there is a story forming around our lives. A beautiful story of redemption, of hope, of love and of family. But the knowledge of this does little to take away the sting of reality.

I am thankful for Dan. I am thankful that I have a strong man to live this life with. Who in so much confidence says exactly what I am feeling and need to hear. Who is real and will walk through the hard things with me.

So hug your babies today. Your normal or abnormal ones. Your snotty nosed, ear infection prone, diaper rashy, completely healthy, colic-y or TSC ridden babes. Be good to those babies. They are such a precious gift.
Love, La