I Choose to Deal With Joy

She told me her son has autism and I said, "Oh! My son has special needs, too!"
My upbeat attitude about my son and his special needs was tampered when she cynically responded with, "So what do you deal with every day?"

I stumbled over my words because I usually talk about how Isaac has special needs and then share that he is the funniest person I know, but that wasn't what she was looking for; she was searching for the downside.

I guess I "deal with" a lot of things and many of them add challenges to my day, but I choose not to act like everything is a burden. This does not mean that I handle this messy life better than the next person. It brings me to tears to think about everything we have been through with Isaac and I grieve for my son and the times in his life when he will not be accepted because of his differences, but I would be a miserable person if I held onto that grief day in and day out. My son would simply be a "job" if I focused on the fact that parts of life may be more challenging because God decided to create Isaac with all but a little missing piece of chromosome nine.

I choose to appreciate the lessons I have learned. I choose to show my daughter that differences are a good thing; that disabled doesn't mean unlovable or unknowing. I choose to teach her to take life slow because you might miss something beautiful otherwise. I choose to show her that God creates perfection in a variety of ways.

 From, Changed by a Child: Companion notes for parents of a child with a disability by Barbara Gill

"Is having a child with a disability a curse or a blessing? A cross or an anchor? A barrier to what I really want to do, or a lightening rod for my priorities? [...] So many people search endlessly for 'meaning' in their lives, often resisting the meaning that is right there. The point is not that we are lucky to have a child with a disability because it gives our lives instant meaning. The point is that to be presented with this event, and to fail to engage it as an opportunity--for focus, for meaning, for learning and growth, for a way to affect the world we live in--is to miss the experience that life has offered us" (229).

I choose for Isaac to know that in this place, he is perfect. I choose for Isaac to trust my presence as his personal warrior and cheerleader (Isabella, too). I choose inclusion, peace, and acceptance.

I drove home in the quiet and was sad for this mom. I know that her challenges are great and she probably feels like she is climbing a mountain without her rescue pack. I feel that way too, sometimes. But everyday I deal with a beautiful boy who is funny and smart, and just so happens to have a feeding tube, and just so happens to need extra help in a lot of ways. I choose to deal with joy.


From, One Thousand Gifts by Ann Voskamp

'"The practice of giving thanks...eucharisteo...this is the way we practice the presence of God, stay present to His presence, and it is always a practice of the eyes. We don't have to change what we see. Only the way we see'" (135).

Isaac Turns Four

It took two years of physical therapy before he would sit on the trampoline in the therapy room. Then almost another year of occupational therapy before he would tentatively stand on the trampoline that is barely inches off the ground. After years of work to build his confidence, help him gain his footing and become more aware of the strength and ability of his own body, he is able to do it on his own. He's still a little unsure as he takes his first steps on the therapy trampoline, but now that he has experienced the freedom of jumping and inevitable silliness, and the positive input to his muscles, he loves it. So when he spoke the words he never would have been able to say exactly one year ago, my eyes filled with tears and I expressed my joy quite loudly. It was ten o'clock at night and he sat snuggled on Walter's lap and said, "Ma. Me birday, me bounce house." "You want a bounce house for your birthday!" I exclaimed. "Yeah, me bounce house." I was determined to get a bounce house for my birthday boy. At three he spoke a collection of ten words. On the brink of four, he joins one sentence after another. It is unbelievable. This is joy.

My parent's neighbors readily agreed to let us borrow their bounce house. We chose not to invite friends for those first few days, this way Isaac would have a chance to become a confident bouncer. He's always been afraid to get in a bounce house because of the number of other kids in it at the same time, so we wanted this just for him. At first he only bounced on his bottom, and refused to go down the slide, but within a couple hours he was bouncing and sliding like a mad man. A little too intensely actually. He ended up with scratches on his face and was completely exhausted that evening. But he had a blast and that's all that matters.

 During the week leading up to his birthday, Isaac repeatedly told me he wanted an "ego, piduh man toy" (Lego Spider-man toy). His hands were shaky with excitement as he opened presents literally searching for a Lego Spider-man...thankfully he was given two Lego Spider-man toys to which he shouted, "COOL!" and "AWESOME!"

 Isaac loves all sports and is especially into basketball, so we surprised him with his very own basketball hoop.

Get ready to take a shot...

Shoot...

 
Score! "Two points!"

Cheer for yourself...

That last picture might as well be me. This has been a tremendous year for our family and Isaac is proving that he is quite capable of success. I'm excited for this fourth year and look forward to Isaac becoming even more verbal and articulate, possibly learning to walk down stairs, drinking a variety of flavors from a cup, and I don't know what else because I just follow Isaac's lead. God has great plans for Isaac and He has taught us to find our blessings in the little things and to live in the moment.

The Gift of Predictability

It's no secret that we've been on a long journey since Isaac's birth. In less than a month we will celebrate his fourth birthday. I carefully chose the word 'celebrate' because this is truly a year to celebrate. Finally, I am able to find joy and peace in mothering him. Since September it has felt less like toughing it out and barely making it through each day and night, and more of a chance to watch my son blossom into a toddler and little boy who does little boy things and less baby things. This time in my life, is a gift, and each day I am thankful for the road I traveled to get to this place, and the daily opportunity to share happy moments with Isaac. 

My years with Isaac have been filled with one doctor appointment after another, and one therapy appointment after another, and one more season of trying to get him to eat orally, and one crabby day and night after another. Now, there are less appointments, we know what is ahead of us, our therapy appointments are regular, and as far as feeding, it is mostly off my radar. I should probably address why feeding isn't important right now, since some readers may be freaking out. Isaac is hitting major developmental milestones and I am happy to enjoy this wonderful ride as it is right now. Feeding is so stressful for me and for Isaac. There really isn't another party involved in this equation of feeding Isaac, and I am not ready to jump back on that ship that was previously sinking at a very alarming rate. So for now, we will continue a gentle food experience during speech therapy and occupational therapy, and obviously, at home. 

I am enjoying the long lost gift of predictability in our days so much so that I rarely want to leave my house! I was discussing this with my mom and told her that I just don't feel like talking to people and I don't feel like being in a group and I certainly don't want to miss nap time, so unless I have to go somewhere, for the most part we stay at home. This business of "staying home" is relatively new to me. After Isabella was born I had to be out of the house pretty much all day, every day, or I thought I would go insane. And then with Isaac I didn't have a choice because we had all of those appointments. At this stage, I'm done being away from home. I enjoy watching my children play quietly and love that we finally have a predictable routine to our days. The more important thing now is to keep up with Isaac's feeding schedule and his nap, and allow chunks of time to make transitions less stressful. It has also been a long, cold winter here in Ohio, so I've enjoyed our quiet mornings and afternoons. 

We did make a quick trip to meet our newest niece. This was a sort of test run for our planned summer vacation. Isaac did really well, but it confirmed how challenging it is to feed him when we are away from home. He is a creature of habit and gets very angry about feeds when he is away from his precious high chair.

Isaac, drinking water from a spoon.

I think this will a wonderful spring and summer with Isaac. We are a family that loves to be outside and until this point it has been very challenging to get Isaac to love the outdoors. On the handful of nice days we've had this year, he has actually wanted to play outside and even threw a tantrum a few nights ago when we told him we had to go inside. This is quite an exciting improvement.

We go to the library a lot, and Isabella participates in weekly swim lessons, church activities and ballet class.

About a month ago I changed math programs with Isabella. Math U See is proving a wonderful change and is really helping solidify some key concepts. And who wouldn't want to play with cool math blocks?

Did you notice the Mario stickers on the wall? Isaac is obsessed with all things Mario and Luigi. He talks about them constantly. I often have to say, "Isaac, we're going to take a break now from talking about Mario." He'll say, "Okay, mommy. Me wait, me daddy come home. Daddy eat, daddy play mo wii (Mario on the Wii)."

I finished the scarf I mentioned in a previous post. It came out really well and I enjoyed the process of making it. For other knitters out there, I did choose to block it and am happy with result.

The kids just came in from playing outside together for almost two hours. Isabella could happily spend all day outside doing whatever it is she does, so I am thankful that she is a wonderful example for Isaac.

Happy Spring,

Sierra