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.

My Sunshine

“You are my Sunshine” was always a favorite song of mine.  When I was pregnant with Max, I wanted to sing to him so he would recognize my voice and calm to my voice after he was born.  I didn’t really know any lullabyes well enough to sing the words so I started singing “You are my Sunshine.”  I only knew the chorus and the first verse (kind of), but the first verse seemed applicable:

“The other night as I lay sleeping

I dreamt I held you in my arms,

But when I woke up, I was mistaken

And I hung my head and I cried.”

It seemed to express the joy and excitement that I felt to meet this child growing inside of me, and my anticipation to hold him as he looked up at me.  And after Max was born the song became even more relevant to my emotions.  Upon arriving at the children’s hospital NICU, I again wanted to sing to Max to comfort him and assure him of my presence.  I longed to hold him so much.  My arms ached for him.  He was knocked out with narcotics and anti-seizure meds (the only way he would stand the total body cooling), so he didn’t respond, I’m not even sure if he could hear me.  But I sang, for him and for me.  And as I reached the verse, I sang “held you in my arms,” my voice broke, and the tears came.  And there was no stopping them.

Five days later when I finally did get to hold him, the tears started pouring again.  This time tears of joy.  I was finally holding my baby!  Something I’d only dreamed of doing for nine long months.

To this day I can’t hear or sing that song without remembering how I sat on a bar-stool type chair so I was high enough to see into the isolate that held my very sick baby – aching to hold him in my arms.  Hoping that everything would be alright, but knowing deep down that it wasn’t.

And now we are making up for lost time.  At 18-months, I still hold my son for several hours a day.  Unlike any other child his age, Max would like nothing more than to be held in his mother or father’s arms (Grandpa and Grandma work pretty nicely too!) all. day. long.  When my back starts screaming, and my patience for holding a baby starts to wane, I try to remind myself: this is special; other moms don’t get this cuddle time.  And most of the time when I hear that song, the tears start pouring again, and when the verse starts, I hug my Max a little tighter…because now I can.

 

Full-time Mom; Part-time Student

Sorry I’ve been MIA for so long.  My summer classes are really working me hard and wearing me out!  Keeping up with all Max’s therapies and appointments is hard enough with everything there is to do around the house, and adding just two classes to that has brought me to my limit.  And then of course there’s all the summer things that I have to take advantage of while the season is here.  I have all these ideas in my head with no time to think them through and write them down.  Here’s a preview of some things I’ve been thinking about.

Blenderized Diets!  We have started to supplement Max’s breastmilk with real food instead of formula!  The more I research this type of diet the more excited I get.  However, the docs aren’t exactly encouraging…

Babywearing – as Max get’s bigger it’s more of a struggle to transport him.  I’m working on finding a carry that is comfy for both of us.  (But we sure are glad he’s gaining well!)

Motherwart tincture, Diaper Salve, etc – I’m loving making my own herbal remedies!

And many other things that are floating around in my head, too premature to put words to.  I’ll try to get back soon!