Tuesday, February 10, 2015

Tears

As I write this I have tears dropping on my laptop!  It's one of those nights. I'm sure many mommies can attest to having "a moment" when you really are feeling down on yourself for one reason or another.  This night and day in particular has been getting to me. It's probably because I have been nursing my family back to health all weekend long and still Cohen remains sick.  I'm frustrated, exhausted, and upset.  Since last Thursday I've been taking care of everyone in this house except for myself.  Ryan, Isla, and Cohen all had pretty bad colds, but Cohen really took a step back during this one.

Tonight I was planning to relax and hop on a national call for my jewelry company( C &I) with a glass of red wine in hand while Ryan was at the gym.  Instead I spent over an hour trying to comfort Cohen and remind Isla to go back to sleep.  Cohen has remained sick even when both Ryan and Isla have overcame their illness this past weekend.  He is sensitive and fragile again and it reminds me all too much of the days we spent back in the hospital.  I want to take away his pain, cough for him, and take on his fevers but I can't.  It's so frustrating to watch your little guy go through so much day in and out while you remain healthy and feeling great.  I know I need to be strong for him but tonight as I sat rocking him in the rocking chair, my mind started racing.

"What if this is going to be our lives forever?"
"How can I divide my time and energy equally between both kids?"
"How can we get through this?"
"Why does he have to struggle so much and how is that justified?"

It's been over 14 months and though we have made huge gains and he's soared leaps and bounds in some areas, sometimes I find myself sulking over accomplishments he still hasn't made yet.  Seeing babies his age talking, walking and eating, remind me that he just isn't there yet.  Worry sets in and I find myself in a panic as to when these things will happen for him.  He is coughing in my arms and ends up vomiting all of his food onto his sleep sack.  This has been our routine for the past week.  He has not been tolerating his food, coughs, has a runny nose, and at one point even had a 106.3 fever (yes I couldn't believe it myself and expected a hospital trip, but doc insisted we could get over this at home and we did!)  Being as sensitive as he is, a normal cold is not your typical series of events.  He can't really take any medicine via mouth yet, is uninterested in eating/drinking anything, and needs to sleep with oxygen still so it's that much harder to keep his nose clear to breath while congested.  His motility seems to be jeopardized when he gets sick as well, which highly effects how much food he can tolerate through his feeding tube.  A small little cold that Isla had is a much bigger concern for Cohen.

This is more of a venting post, but I just had to get it out there.  This is for any momma who has had her moments, whether it was a toddler's tantrum, or not having time to shower or eat lunch.  Everyone is entitled to having one of these moments every once in awhile and that was mine!

Good Night :)

Sunday, February 1, 2015

Three Miracles in One Week!

As I cuddle up on my warm couch and watch the Super Bowl tonight not venturing out in this crazy blizzard we are having in Chicago, I think about three miracles that have happened this weekend. The first miracle happened almost a week ago.  After Cohen was cleared passing the gastric emptying study we scheduled him to get his feeding tube switched from a gj to just a g tube.  The last time he had a g tube was exactly a year ago when he went into the hospital via ambulance for turning blue on us in the house after choking.  The doctors decided it would be safest for Cohen to get the gj tube at that point and it was placed February 27, 2014.  Although it has been a means of nutrition for Cohen, transitioning him to just a g tube will help him transition to eat more food by mouth and in time not need his feeding tube. But this slow process does take time.  He had it placed on Monday, no surgery, just an office visit and he did very well!  We have been working at increasing his tolerance to a larger quantity to hopefully move him from 5 feeds/day to just 4 mimicking a typical feeding schedule for a child his age.  It's quite uplifting to think that just 2 months ago Cohen was still eating through the night and some day (almost on the pump for about 15 hours/day).  Now he is only attached for about 5 and it amazing to be able to sleep from 11pm-6am with uninterrupted sleep.


The second miracle happened over the weekend. For once as a family we had another dose of "normalcy."  When I say normalcy I don't mean it in a negative way to people or families that don't get to experience "normalcy."  I think of normalcy as something that people take for granted every day.  Things that you do on a daily basis that are easy, effortless, and you wouldn't even think twice about doing an hour later.  Normalcy is feeling part of the community you live in, the network of friends/family you have, and being an active participant.  Though I love that Cohen is unique, eccentric, and special in so many ways and it has taught Ryan, Isla, and I to be thankful for the little things, transitioning from a normal way to our new normal has been rough on me.  Being the perfectionist I am, it was so challenging this past year to take the stares from others, accept the fact that Cohen is going to do things at his own pace and his own way, and realize that some friendships might never understand the challenges our family faced last year.  It took me this long to accept our new normal, as I've talked about in previous blogs.  Cohen has made this new normal for our entire family and it has all effected us in ways we could've never imagined.

This weekend though, we left our new normal home.  For the first time since Cohen has been born, we went out and did things as a family two nights in a row!  Both of them were rather spontaneous and something we really couldn't have done even a few months ago.  On Friday night, we went to a local playroom in Chicago, Peekaboo Playroom, for a Rapunzel sighting and it was so relieving to be able to just up and leave without tons of equipment.  From 4-7pm we spent time as a family together outside of our home...away from monitors, oxygen, feeding pumps, beeping, alarms, medicines, etc.  Cohen had his first experience at a playroom and Isla was enamored by watching Rapunzel sing.  We made it back in time to start Cohen's feed and put them both to bed.

The next night, we again ventured out to a local neighborhood bar that was hosting the neighborhood association annual party.  There were many families there and we had the chance to finally meet neighbors.  It was yet again another occasion where Cohen was able to go completely cordless, free of any baggage, and it felt amazing!  Sometimes its rather surreal for me to walk into a place with other families and parents of very healthy children.  It's challenging to not feel any slight jealousy of their kids walking, talking, and eating normally.  It's difficult to have to answer questions about his age, when he appears smaller than he is and then feel the need to have to explain the situation.  Cohen is our miracle baby and has accomplished and endured more things in his short life than many people can say they have done.  Sometimes it's a reminder though when we do take him out in public and it's a realization that even though to us he is doing so well, seems so chunky, and healthy that he is still so behind.  You see another baby the same age as Cohen, who is standing and almost walking and it is a reminder that his development is a struggle for him and continues to be.


But with that being said, our third and most exciting miracle happened tonight.  We were supposed to attend a friend's annual Super Bowl party and Isla had even prepared some snacks from her new Disney Princess Cookbook (thanks Aunt Michelle): Tiger Fudge and Princess Popcorn.  After getting all bundled up, looking outside, trying to get a cab, we finally had to change our plans and stay at home.  We all changed into our Bears gear and got comfy in the living room waiting for pizza delivery.  Cohen was up playing and babbling a little as he sometimes does.  But within minutes and out of nowhere, his babbling advanced to actual repetitive  ba-ba-ba-ma-ba-ba-ma-ma!!!!  Up until this point, he would do raspberries and an occasional "b" or "d" or "g" but nothing like this.
video




Tears of joy stained my husband's cheeks (definitely the more sensitive one of us both) and I stood there with my jaw open in shock.  How did this just happen?  This moment we had been longing for so much had just happened and all during our Plan B Super Bowl Blizzard Party?  We ran to get our phones and video tape this monumental milestone for Cohen.  Something I don't think I realized until being the mommy of a special needs child is the milestones that they accomplish are far more impressive and overwhelming than of a typical healthy child.  Not saying that we also didn't cry tears of joy for our first whenever she did anything, and even today when she learns a new fancy word or when she signs her name.  But there is something to be said about the waiting and longing, the hoping and praying, the doubting and pleading that one day he too will go through those same life moments that she did.  His road and journey have been tough and challenging and although sometimes I doubted in my mind that some of these things would even happen (probably to save myself the disappointment) it's easy to say that I will no longer doubt him.  I will stand by his side as his proud mommy helping him, coaching him, and loving him every bit of the way!