The Wheelchair I never wanted

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When I first heard about babywearing I loved it.  Cuddling my baby instead of looking at him from stroller distance sounded wonderful to me.  Then I heard and read all about the benefits of babywearing (like this, and this, and this) and I loved it even more.  I talked to moms who wore their babies until they were four or five – moving from a front carry to a hip carry to a back carry.

When Max was born with a brain injury, all those benefits of babywearing were even more important.  Temperature regulation, better oxygenation, improved physical development, better weight gain – these were all areas that he needed all the help he could get.  So I vowed to make babywearing work.  And I put up a serious fight.  When he arched and cried in the wrap, I went out for walks so that he would get used to being in it and calm with the movement of walking and being outdoors.  And we worked for a long time to get him used to it and to the point where he liked it.  We tried different wraps: Moby, Mai Tei, and a woven wrap- and we had mixed results, but we never gave up.  In retrospect I can say his intolerance for being worn had more to do with his slow digestion and the pressure on his tummy giving him a tummy ache than not liking the wrap, but when you have a baby who doesn’t like to be worn or “strolled” it makes life complicated.  As Max’s digestion improved so did his tolerance for being worn.  I heard about Rachel Coleman wearing her cerebral palsy child until she was eleven (probably older!), and I was inspired.  I told myself we wouldn’t get a wheelchair either.  We would have so much more freedom if we just wore Max where ever we wanted to go (hiking, stairs, etc).

But as Max grew to 22 and 23 pounds still didn’t have much sense of balance and ability to hold on, it became harder and harder to carry him around.  Think about it like carrying a 23-pound newborn, or an sleeping toddler.  I started to realize that there were obvious benefits to having a wheelchair.  I started to feel those 23 pounds more and more – in my back and my knees that is…

Then there were concerns of Max’s therapists.  He had a definite preference for his right side and would tend to slouch to that side when supported sitting curving his spine as he sat.  This was a problem and we needed some form of brace to strengthen the other muscles to maintain a straight spine.  They recommended a wheelchair.  It could be designed to fit him and his needs perfectly.  It would support his spine without needing someone to monitor his positioning constantly – it would be a form of physical therapy.

So started the arduous process of obtaining a wheelchair.  There was the fitting with the wheelchair designer.  The therapists discussed Max’s needs and ordered the necessary features.  Then the applications had to be filled out.  The therapists had to justify every single feature and obtain a doctor’s order for a wheelchair.  And finally the waiting.  We waited a month…heard nothing.  Another month…we’ve been approved by medicaid!  One more month…we were waiting for one more piece to come in.  Another month…the pieces were in, they just needed to be put together.

Each week my back and my knees got achier.  My anticipation for the wheelchair grew and grew, and I wondered if I could carry this baby around much longer.  Finally we got the call that the chair was ready and we scheduled a fitting.  Max got his wheelchair and it works great for him.  He’s still getting used to it, and he has moments that he just wants to be held and cuddled like old times, but it is so much better for our family.

I thought I never wanted a wheelchair.  I had great hopes that Max would walk one day, and I figured until that time we could babywear.  And maybe that works for some families, but it wasn’t right for ours.  If Max has always loved being worn it might be easier.  If Max had great head control and I could be confident of his ability to support his neck in a back carry we probably would have done it longer and more often.   I’m not ready to say that this is the end of my “Max-wearing”, but I’m willing to say that I don’t have the stamina to wear him every time we are out and about.  Kuodos to all you mothers who do.  I still believe that wearing is great for babies, toddles, and even older kids.  I admire Rachel Coleman.  But I can’t be her.  That’s not me; my situation is different; my baby is different.  During that last month waiting for the wheelchair, I was pining for it.  The wheelchair that I never wanted became something that would solve all my problems.

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Now that it’s here, yeah, maybe I built it up to be more than it really is.  My back still hurts after taking care of Max all day.  I still pick him up and put him down on the floor and strain my knees, but I’m very thankful for the chair.  I think it does offer a lot of freedom for us – I don’t feel trapped in my own home – and most of all that it is challenging Max to grow and strengthen his body in a way that he wouldn’t be challenged if we were to carry him all the time.

It’s another one of those things that is not what I dreamed for my child, but it’s what is best for him at this point in his life.

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The Big Green Monster of Jealousy

The other day I was walking back from the grocery store with my baby tied around my trunk (I finally found a “wearing” method he’ll tolerate, very profound for us, as he pretty much hates the stroller), groceries in both arms, when I saw two mom friends of mine (I should say, acquaintances) strolling down the other side of the street with their happy babies in their strollers chit chatting back and forth on their way to the park.  I had seen the e-mail invite for a play date in the park earlier that day, but in addition to Max’s normal maintenance, he was sick, so I knew I couldn’t go.  When I saw these friends walking down the street, the bitter, angry jealousy flowed over me.  As I walked the rest of the way home I thought bitterly, “oh, wouldn’t it be nice if all I needed was my baby and a diaper bag to go anywhere…wouldn’t it be convenient if I could just feed my baby anytime and anywhere…wouldn’t it be nice if my child would be happy and content in a stroller?”

Three weeks ago my sister-in-law had her baby.  I wasn’t happy.  I didn’t rush to give her an emphatic “Congratulations!”  The bitter, angry jealousy came over me and I remember thinking, “well of course her baby is healthy.”

I know it’s normal for parents of kids with disabilities to be a little bit jealous of other kids from time to time.  It’s not like any child deserves to have a disability, and I think our jealousy is our way of sticking up for our kids.  It’s a feeling like “what did my kid do to deserve this when that kid is perfectly healthy.”  But although I don’t think it’s abnormal, I still wonder, “Will it ever stop?”  Will I ever reach a point where I am happy for the son that I have with no comparisons to others?  Don’t get me wrong.  I love my son.  I love everything about him.  But that doesn’t mean I don’t wish that he would smile at me – or look me in the eye – or suck on his fingers – or stick them up his nose.  I see one-month-old babies and get sad because I wish that Max could do the things that they do.  I’ve had all these feelings for 10-months, and I don’t feel like I’m any closer to getting over them.  At times I feel like the more behind Max is (the more milestones he’s missed) the more jealous I get of kids his age.  Will I ever get over it and be content with my life as it is?  Or will I always have moments of jealousy tainting a generally wonderful day?

From time to time, I wonder, if none of this had happened, and Max had stayed the perfectly normal healthy baby that he was in the womb, what would he be like?  Would he be crawling yet?  What would he laugh at, and what would make him cry?  I know this is starting down the road to a dangerous comparison trap, and I don’t want my son to grow up feeling sorry for himself any more than I want to live my life feeling sorry for myself.  That’s not healthy.  I just seem to have a really hard time breaking out of this pattern.

Any advice?  How can I break myself out of a negative thinking pattern into one of joy and gratitude?