Oct 16, 2013

Looking for Hope

I wouldn't have survived this journey so far if it weren't for the on-line support groups for kids with similar conditions. In the beginning I felt so ALONE. I didn't know anyone whose kid had anything like what my kid had. I'd had two "perfect" kids and just couldn't understand how this could be. Nor how to "fix it". Because initially I really thought I could. I thought maybe if I found the "right therapy" or the "right doctor" or the one in a billion kid "like mine" (there is none) it would help me formulate a plan and with enough dedication I could make everything okay.

Ainsley's 7th birthday is Friday. Earlier this week I hopped on-line to check in with two of my on-line support sites. Honestly now when I read new parents' posts on-line I hear it in their "voices" when they say they are looking for "hope" that they are really looking to "fix".  I've been there. Eventually I came to realize that there was not going to be a "fix" for Ainsley and that her challenges would last her entire life. It was a difficult thing to accept. But when I did there came some peace.

Although I've accepted it I still find myself struggling to "fix". I peak in on the Cerebellar Hypoplasia Facebook site every so often and frequently see kids who are 3 and WALKING. Back in the beginning I expected that because I knew it was possible. There are people without a cerebellum at all and they function quite normally. People with balanced chromosome translocations that are completely ordinary. People who have a trach for a period, then get it out and it's like nothing ever happened. Many many kids with hip dysplasia and craniosynostosis (I later learned it's not so rare.) who have surgical repairs and then blend in just fine. I looked to other children's progress hoping it would predict our future. I've since come to realize that even among children with the same diagnosis there are degrees of severity and wildly different outcomes. Someone else's outcome does NOT predict our outcome.

I know Ainsley would benefit from more consistent work in all the areas that she faces difficulty, which honestly....is EVERYTHING. Balance, standing, walking, stretching, eating, oral speech, her communication device, sign language, hand writing, educational goals (numbers, letters, colors), BREATHING (it would be so nice just to have an open stable airway). There isn't enough time in a day. But doesn't she also need to be a child? And play? Doesn't she need a break from "doing"? And what about her brother and sister and their needs? Then there is normal life: chores, cooking, laundry, cleaning, homework, etc. This is why I call it extreme juggling. No matter what there will be some dropped balls along the way.

Parents of special needs kids are always caught in between being realistic about their child's abilities and doing what they can to make the most of their abilities. As if there wasn't enough guilt in parenting, you can multiply that times 10 for a special needs parent. The stakes are HIGH. There is a lot of extra room for self-doubt, because honestly even the professionals are unsure about a lot when it comes to any child that doesn't fit into the "typical" category. It takes more effort for these kids to progress at a slower rate. That is obvious but think about what that means. This is why parents of special needs kids might secretly roll their eyes when parents of typical kids say they "know how it is" or make comparisons. It doesn't seem much harder from the outside but it is. Much like how a person underestimates the energy it takes to be a parent until they become one.

This past weekend my dear friend Ann said how impressed she is with Ainsley's progress. And people often tell me that. I measure the inchstones, really I do...but it can be discouraging to work so hard for so little. Really I thought Ainsley would be walking years ago. She's seemed so close for so long. I thought the same with speech, with eating and learning. And that is really the problem, my expectations.  Ann's son is unable to move and I'm sure she would give anything in the world for her son to be able to do the things Ainsley can. It REALLY is all about PERSPECTIVE.

If I could go back to the beginning I would give myself this advice: Meet your child (Ainsley) where she is at. Right NOW. Love her. ENJOY her. Know that she will be her own unique person in the world and that is OKAY even if it's not what you would choose for her. It's not FAIR but life isn't, so don't expect it to be. Time will reveal the person she is meant to be. Instead of looking for hope pray for PATIENCE. Rather than focusing on the DESTINATION find a way, whatever it takes, to enjoy the JOURNEY. Yes, it's far easier to say that than to do it. It IS the human struggle. You'll have to work on it for the rest of your life but there is no choice. The alternative will make you miserable. If you wait for life to get easier to be happy, you will never be happy because happiness is a state of mind, not a set of conditions.

This week I took a look back through my photos, and saw lots and lots of inchstones that I thought I would share.

Nov. 2006 Ainsley went from all hooked up to trached and mostly wire free. We gained an inch.

 2007 we weaned away from this: continuous feedings and 24/7 pulse-oximetry.

Jan. 2007 we worked on tummy time and head control.

Feb. 2007 she was finally able to reach up and touch a toy.

Jul. 2007 working on spoon feeding and purees. I hoped she'd be eating soon.

Jul. 2007 finished with cranial reconstructions. Major milestone with major setbacks. See that look on my face? I knew in my gut that her eyes should be open.

Aug. 2008 her eyes do open. Just not the way they did.

You thought this one was something about sleeping didn't you? Nope. She's awake. This is the day she got her first speaking valve, so she got a voice finally. Except she couldn't tolerate it well so we had to work up to using it. One inch forward, one inch back. 

Oct. 2007 she sits unassisted.

Mar. 2008 she pushes up. She'd recovered from hip surgery, a spica cast and brace.

It takes her so much effort that she can barely do it.

And immediately crashes out. She just doesn't have as high an energy level as a typical kid.

Sept. 2008 she was able to crawl to the other end of the house.

Oct. 2008 she gets a fundo and that puts an end to this vomiting nonsense, thank God!

Nov. 2008 she is able to join her siblings in the bath for the first time. Previously I bathed with her. We have to be careful. Once she was stable and able to wear a cap this became less stressful.

Jan. 2008 she gets scoped and her airway is improved and she takes home a cap and we start working on capping. Although her airway is much better post-fundo she still has difficult times.

Feb. 2009 at age 2 she just needs very minimal support to stand. I am hopeful that she'll be standing soon.
During all of 2009 we do oodles of early intervention.

Ainsley takes more and more risks, but it doesn't always work out well.

2009 She made feeding progress, and regressed, many times over (like in 2007, 2008, 2009, 2010, 2011 and 2012). Maybe I should call this the inchworm dance.

Jun. 2009 she gets a posterior walker.

Aug. 2009 tired of hoping she'd "outgrow" her airway condition we temporarily try removing the trach at home and she does well(note sats of 100% on the pulse-ox). That starts the process of trying to get CPAP for her most troubled time, when she sleeps, hoping we'll eventually get to permanent decann.

May 2010 she gets her first electronic communication device, a step up from PECS cards. We move away from learning additional sign language (though Ainsley still uses the signs she knows). She's had 3 others since this one (Vantage, IPad with TouchChatHD and now the NovaChat7). We also work on oral speech as well.

Jun. 2010 she is able to stick out her tongue. It's important to have control for eating a speech.

Jul. 2010 she climbs the stairs. We are delighted and terrified. It's good strenthening but is risky. We consider how much longer we'll be able to live in an old(stairs not to current code) 3 story house.

Dec. 2010 she makes a circle during homework time, though her grasp is still not "proper".

Jan. 2011 she is able to climb onto a chair. It takes awhile to perfect this skill enough that we can relax.

Feb. 2011 she tells us she is hungry. Tube fed kids often don't and will miss feedings without complaint if you forget.

Feb. 2011 she is able to pull herself up to a stand at the sink by herself.

Jun. 2011 we've been working on toileting and she asks to use the public restroom. On several occasions.

Jun. 2011 she eats a bowl full of yogurt and asks for more. Huge progress from the days when we counted the bites and pleaded for her to eat "just a few more bites".

Sept. 2011 she stands on tip-toe.

Jan. 2012 she signs that she needs to use the potty. Being aware and able to communicate that need is a huge step toward being able to potty train.

Feb. 2012 she starts getting rowdy and climbing up on things and people. We find her in all kinds of funny places.

Feb. 2012 she is curious and starts asking about things that she sees (as in trying to communicate about them, asking questions in her own way.)

Mar. 2012 she is able to get into her walker by herself without it rolling away from her.

Mar. 2012 her imaginative play takes off, and she also goes through a phase of raising her hand all the time (like they do in school).

Apr. 2012 she takes it upon herself to get her walker and go play outside with the rest of the kids.

 Apr. 2009 she starts to steal and use her siblings' devices. It's hard to believe there was ever a day when we wondered if she would be capable of using a touch screen and swiping. Or that pointing was an OT goal.

Apr. 2012 we see she is over her fear of animatronics (or people in costumes), a sure sign she's maturing.

June 2012 she is anticipating things and tries to be helpful like here by lifting her plate for her brother to wipe down the dinner table.

June 2012 she's become less fearful of doctor appointments and the hospital and even climbs up into the chair willingly.

June 2012 she climbs into the car (hooray for my back) though it looks like it in the picture, in fact, she cannot latch the seatbelt herself.

June. 2012 I discover that she is really good at matching and that can fool you into thinking she knows things like colors, letters etc. Very discouraging after so many years of working on pre-academics.

June 2012 she is getting pretty good at throwing.

June 2012 she will consistently use her new communication device to select a show.

June 2012 she can follow unexpected instructions like please fetch Daddy a beer. LOL.

July 2012 she makes attempts and getting dressed and is pretty good at taking off clothes when you don't want her to.

Aug. 2012 she is getting a little too brave and we need to think about whether a big girl bed would be safe (because of the fall risk and the cords of her pulse-oximeter and warm mist).

Aug. 2012 she stands for a few seconds without support. I hope this time she is really going to start to stand and then walk. Any day......Not.

Aug. 2012 over the summer we intensify our feeding efforts. She starts to make progress with textures and table foods. 

Nov. 2012 she starts hippotherapy. She likes it but a year later she is still not any closer to walking.

Jan. 2013 we make the permanent switch to underwear all day. (Nighttime too later in the year.)

Jan. 2013 she can eat an entire bowl of smooth blenderized food (very thick).

Mar. 2013 she transitions to a big girl bed. She falls out once but is okay and from then on is fine.

Spring and Summer 2013 we continue to focus on oral eating. She advances to TABLE FOODS. We try Botox injections and it seems to help her. She does better on a swallow study than ever before, but worse on the sleep study. We decide to try another round of Botox, continue feeding watch her lung health and see how it goes.


Sept. 2013 Ainsley uses her walker to walk into the hospital and appointment. Her doctor is impressed and goes on about how great she seems to be doing now because of it (even though she's been using this walker for nearly 4 years). That's what I was going for because I want his help. It worked.

She also ASKS to eat in the cafeteria (in that special way we have of talking).

It's been nearly 7 years and I could have never imaged what these years would hold. They haven't been easy but Ainsley is inching along. I no longer have "hope" that she will live a "regular life" but I have something better.....

The knowledge that she will be okay anyway and she will be happy and loved and that matters most! 


  1. BEAUTIFUL post that exemplifies what patience, hard work and, I believe, hope can achieve. Hope can be as big as hoping for your child to achieve milestones or as simple as hoping for your child to have a day without pain. It is all relative and it's ever changing.

    Love you!

  2. So we'll said. And Happy Birthday Ainsley!!

  3. Awesome post! What fun to look back at the progress and how inspirational. It has been a lot of hard work, commitment, endurance, and drive but amazing to see the benefits of the labor! What a gift she is!

  4. Susan
    One out of 2,000 babies born are affected by craniosynostosis. One out of 2,000. I am no math whizz, but that sounds rare to me!! It isn't? Plus, craniosynostosis usually only occurs to boys!! Both Ainsley and I are girls!! I, personally, find that pretty cool. Because my skull was cut open/reconstructed--twice--I suffer from learning disabilities, such as premature short-term memory loss. Unfortunately. Now, I am not intelligent enough to attend college. {I do not want to!!} However, I read about one woman who was born with craniosynostosis, and she now works as a licensed practical nurse. Whoa. I could never obtain such a career. See, everybody is different. And there's nothing wrong with being unordinary. We are extraordinary!! And Ainsley is Beautifully Unique!! ;)

  5. Oh Susan! What a FABULOUS and BEAUTIFUL post! You did an amazing job! I loved looking back at all those photos! We should have talked photo storage and organization when we were together. We are a mess over here. It would take forever for me to find those kinds of photos of Harlie. And you do such a great job of explaining differences in raising a child with special needs vs. a typical child. Seriously, I can't say enough good things about this post. Happy Belated Birthday to Ainsley! I hope you all had a wonderful day celebrating her amazing life.

    Miss you!
    Christy xo

  6. Great post & Happy Birthday Ainsley! Mel

  7. I stumbled upon your blog while trying to do some research for my daughter. She's tube fed, has sacral ageneis, complex heart defect, hetertaxy. Your daughter is so much older than my girl. I know those inch stones so well. But I gotta say I think she is amazing, the progress...wow. She is beautiful and amazing. I'm so glad I came across your blog tonight. I needed to see some positive progress.