A Letter (and a somewhat lengthy update)

I just read this blog post: Letter to the Others

I cannot begin to tell you how much this rings true.

Granted, my child is only 5.5 months old, and I haven’t yet had to deal with the rude comments or insensitive words of strangers….or even the kind words much for that matter. Nevertheless, this is what my “Letter to the Others” would say.

You are generally silent when you see our daughter.

But I see the look. You see a stroller and say “Oh, a baby!”, then you see the tubes and various things you don’t even know how to begin to name and immediately look away for fear of offending me.

If we happen to make eye contact, you give me that half-smile that says, “Aw. I’m sorry.”

To which I want to reply, “Don’t be! I’m not!”

The thing is, you want to ask questions. I know you do. I can see it on your face…..and I WANT you to ask!

Not so I can give you a piece of my mind.

No. I want you to ask, so I can tell you about this amazing little miracle baby.

I want to explain everything to you.

I want to tell you what her problems are and why she has them.

I want to tell you why she can’t breath like other people. Why she can’t eat. Why she looks like her own personal bubble machine. What that seriously loud machine is that we have to crank up in the middle of the silent waiting room every 2 minutes. I want to tell you!

Most of all, I want to tell you that it’s all temporary. That she will most likely outgrow all of this and be okay. That mentally she is just fine.

BUT…I also want you to know about that other thing. The thing you can’t see. The thing that will always be there.

The Spina Bifida.

When all these breathing, feeding, swallowing problems are outgrown, overcome and gone. When the oxygen tanks, suction machines and feeding pumps are all gone. There’s still that.

She may need leg braces. She may walk differently. It may take her longer to learn to do some things.

She may never be someone’s picture of “normal.”

But she’ll be a walking miracle because of all the stuff that came before.

And I know one day there is going to be some kid on a playground or in a store who wants to know, “What’s ‘wrong‘ with that little girl? Why does she walk funny? What are those things on her legs?” And there will probably even be some kid who calls her “retarded” because that’s just how kids are….and that’s okay.

Even then, I’d like to think that “My [daughter] is here to teach us all about the beauty of our differences, to stretch us beyond our comfort zones into each others’ lives,”…and maybe even to give us another glimpse of the complex, miraculous and unique workings of The Creator.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

“For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.” ~ Psalm 139:13-16

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I know it has been quite some time since I have given an update on Hope, so I thought I should at least tag one on here at the end.

We are ALL doing wonderful. Hope is developing and improving by leaps and bounds!

She is up to a whopping 8 lbs 12 oz 9 lbs .5oz!!! Almost twice her birth weight and finally bigger than her 2 sisters birth weights (both over 8 lbs!).

It seems that she is teething. She sucks and chews on her hands every waking moment now. It will be interesting to see this little baby with teeth.

She has been trying to roll over on her tummy. We’ve actually rearranged the rooms again because she can’t continue to sleep in the bassinet when she starts rolling over. She’s already spending some time in her crib during the day now (which now resides in the dining room). She seems to enjoy the extra space to move…and being able to see the room. We haven’t started moving her into anything else for night sleeping. Though I have already set up the Pack N Play in our room for her.

Smiles are pretty frequently now. She even looked like she was laughing once, and 2 nurse and I are almost certain we have each heard her squeak a couple times, so she might be getting vocal soon. She has figured out how to make noises, like raspberries on her paci. I’m pretty sure she enjoys it now that she’s figured out a way to make a noise she can hear. It’s really quite adorable.

Hope is very aware of her surroundings. She’s alert and follows voices, movement and such quite well. Her nurses have assured me on several occasions that there doesn’t seem to be anything wrong with her brain. She knows exactly what’s going on. Her body just needs to catch up…which we are working on.

We are increasing her feeding rates by 2 mL every 10 days. Her chin, or shall I say chins, are getting so chunky, it’s beginning to make trach care pretty difficult (her active little arms aren’t helping either). She’s gained enough weight that her shunt (which runs down on top of her ribs into her abdomen) is almost no longer visible. The difference in her legs (one is muscularly weaker than the other) look almost no different now either. She’s finally made into size 0-3 mos clothes!

Her new leg brace was delivered last Friday, and she seems to be handling it fine. It’s purple by the way, and kind of cute. When she gets big enough for the patterns to actually show up, maybe I’ll pick something sassy like leopard 🙂

All of her therapists are excited with the progress she is making. She has therapy at home every weekday.

We have Physical Therapy twice a week. In PT, she is learning to and doing well with holding her head up, building trunk (stomach and back) strength with supported sitting, reaching, supporting her weight on her arms while sitting, turning her head, rolling from one side to the other, pushing with her legs and strengthening her weak ankles (particularly the right one). Her physical therapist is a sweetheart and shares contagious excitement with every improvement Hope makes. I love that she sings while they do her exercises.

Speech therapy is also twice a week. I know everyone wonders what in the world a speech therapist does with a 5 month old. The ST works on everything that is oral. Remember, Hope has a trach and a feeding tube, so she doesn’t breathe or eat through her mouth. Our ST is wonderful and is doing things like getting her used to different flavors and textures in her mouth, working her oral muscles by stimulating her to swallow and holding onto her pacifier – things that will be necessary in the future for her to eat, breathe and/or speak. She tells us that Hope is handling her secretions much better already, and her swallowing is improving. She has even agreed that it is worthwhile to request another swallow study to see if she can handle any fluids without aspirating, so that we could wean her back to bottle feeding! I’ll be making that request next week at the NICU clinic when they plan to discuss having a g-tube placed (through her stomach).

Occupational therapy is once a week. We don’t see her as much, so there hasn’t been as much opportunity to get to know her, but she’s fabulous too. She works on reaching, grasping, and releasing. Hope tends to hold her thumbs in tight, so we work on that. At this age, she does many things that are similar to PT (in fact, there are some things like tracking with her eyes that cross-over all 3 therapies), but there will be more differences as she gets older.

We visited the orthopedist today. He thinks she might need a tendon snipped in her right hip, but we’ll have to see another ortho who actually still operates to find out for sure.

I think that about covers it. We’re in October now. Sick season will be upon us soon, so her escapades out of the home will be even fewer. We have been taking her to church on Sundays, but this one will most likely be the last until Spring. Sorry folks. Hope is very high risk for things like RSV. RSV is apparently no big deal for us grown ups, but a very BIG deal for medically-compromised little babies like her. She’ll be receiving preventative shots for 6 months starting in November.

Anyway, her dedication ceremony will be this Sunday at our church. Of course, she was dedicated to the Lord before she was ever born…even before she was conceived, but it’s a tradition we like to follow. Please, feel free to join us if you’d like!

As always, thank you for your continued prayers, loving support and encouragement.

Soli Deo Gloria!

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4 comments on “A Letter (and a somewhat lengthy update)

  1. Oh my goodness this is so beautiful. It’s so nice to “meet” Hope and welcome to this very different world. You’re part of my family now. Yes, it’s isolating sometimes (which is why I wrote the letter) but it’s so many other wonderful things too. I hope that Hope continues to get stronger. All my best to you.

    and thanks too for sharing my post. Heather

  2. Annie Chace says:

    Reblogged this on Parrots, Prose, and Peanuts and commented:
    Beautiful!

  3. Annie Chace says:

    Thank you for this. I’m a 45 year old woman with spina bifida. You bet I will be following your blog!

  4. […] Tanya talks about the privilege of living life with people who are different from us. Donna wrote her own letter asking others to ask her about her […]

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