One Month Home

One month ago we were flying home, ready to begin our new life as a family of 7.  
I can't believe how fast this month was flown by. 

It feels like this little guy has always been a part of our family forever...or maybe was always meant to be.  
I really can't believe how seamlessly he fits in. 

The kids love their new brother.  They just haven't even missed a beat.  There was no "adjustment" phase for my three older ones.  They just love having him home.   There were only some very mild moments of  of jealousy and insecurity from Cece but that seems to have passed.  She adores him now, and doesn't question his place in our family.   Cece and Elijah are very at very similar places developmentally and quite often have little spats over toys, or who gets to sit on mama's lap, or taking turns with something.  They can also be very sweet and affectionate with each other. 

These two, my "twin" 6 yr olds,  have such sweet relationship.  Silas is our wild card with most everything.  He is the most resistant to any sort of change, and he has the hardest time with empathy (or understanding a broader perspective).  I am so stinkin' proud of this kid.  He has been amazing and I hate to say it but I'm a bit shocked.  He has always had soft spot for his little siblings though (whether fostered or adopted).  He has never pragmatically requested we send him back (although the day may come) and he has never been anything but very generous with sharing his room, his parents, and all his toys.  He loves having a brother that he feels like he has a special connection with, without all the competitive stuff.  He has naturally slid into a protective"big brother" caretaker and play mate role with Elijah....even though Elijah is older than he is, very likely a year older.  They are cute little buddies. 

Some things I've learned about parenting a child with CP this month are....
an umbrella stroller is not awesome for a 6 yr old. 

Our rural area and small province (population wise) does not have a lot of options for pediatric wheelchairs etc.  and it's a long process to get things figured out, ordered, and find funding.   We've been working on it diligently for a month.  I think we have a basic Convaid Cruiser (push chair) finally ordered...I think...if they don't forget again (they have forgotten about us and our order completely a few times).  It should arrive in the next 1-12 months?  the story keeps changing.  (grrrr)  There are some charities that may be able to fund some of the equipment we need but we're still working on the application process, which also requires letters from specialists,  and quotes from vendors (which there aren't very many of)...and figuring out who they are and what they offer.   So between trying to find equipment, and trying to set up the appointments to various therapists and specialists.  It's nearly a full time job.  Thankfully my husband has been Mr. phone calling, squeaky wheel super hero.   We've certainly learned that no one is going to come knocking on our door offering to give Elijah the help he needs.  I know advocating for any atypical kid is a battle (one I've ventured into with a couple of my other kids)but I haven't been very good at pounding on closed doors.  I just get frustrated and leave it as is.   That's not an option for us now.  Learning to be more assertive for Elijah's sake might actually help with some other kid issues (like Dyslexia, ADHD etc) that we've been trying to figure out on our own for too long, without professional support.  

We're realizing that we need to get adaptive equipment and mobility stuff figured out soon because he is getting bigger.  I'm thankful that we were able to get him home while he's still on the fringe of being "little".  Right now he's just barely little enough for me to carry, lift, hoist around all day, but he's already gained a few pounds in just this past month...and by the end of many days my arms and back are aching.  Between his physical limitations and his intense desire to be held on my lap for hours a day, it's kind of like having a very large newborn some days.  But like those sweet demanding days of always having a babe snuggled into your lap, there's a preciousness about this time as our bond takes form and grows deeper, and a little heart begins to heal.   Physical contact (holding therapy) is said to be the most effective tool in therapeutic parenting...so I'm pretty blessed that this is something he naturally wants to do.  Kids who are born with CP in Canada are seeing therapists, specialist and getting equipment from infancy...Elijah has a lot of time to make up for so there isn't any time left to procrastinate on it.  

 There are so many things, that with the help of an Occupational Therapist, we can set up better in our home to make him as independent as possible. We're just starting so from scratch with our knowledge, with knowing how to set things up better, and with any sort of equipment.  

I'm realizing that my biggest challenge, might also be his biggest hindrance.  It is SO much harder to let him do things himself..not to mention much more time consuming.  For our first few weeks together (esp. during our time in China) I was much more focused on using all the daily care activities as golden opportunities for nurture and bonding.   His attachment and trust that we will take care of his needs trumped independence ...which was essential I believe.   Now after 6 weeks, I'm trying to back off a bit more and let him do things for himself.   He is able to do so much, it just takes an excruciatingly long time.  It's a solid lesson in patience for me, especially since I would rather swoop in and save him the frustration.  I fully realize that doing this long term will not be dong him any favors.   I'm trying to slowly push that pendulum further away from having a 37 lb infant and toward working on the life skills he will need to have. It's a bit of a balance...not to sacrifice his need to feel  cared for, and yet pushing him to work on things he'd rather not do.   It really is spectacular to watch him put on his own pants and socks...although many times I have to leave and let him work away at it, to avoid swooping in.  I find it almost painful to resist.   He really does find so much satisfaction in doing things himself.  

Our calender is filling up quickly with a variety of appointments as we begin our life of trying this kid up with medical care, diagnostics,  and therapy.  I'm looking forward to getting this ball rolling.  Next week we start with his extensive dental work.  Our insurance won't cover any of his dental work until the end of the year, so we have to opt out of the surgery route.  It kind of hurts my heart to think about it, but he's so cooperative and tough that I think he'll manage getting his teeth fixed the old fashioned way...and we have a superb dentist who is great with kids.  It will just be good to get it done.   

I've also discovered, like with any kind of parenting, parenting a special needs kid is hard on my selfishness...which some days I would like to preserve,  pristine, and untarnished.   Those moments, and sometimes, whole days are the hardest...as I resist the chaffing work of having more of my idolatry revealed and slowly sanded away.  There have been some days when I wake up and whine to myself "but I just don't feel like it today", (any novelty of caring for a child with a disability...or just being a mom to 5 has completely warn off)...but then I remind myself that my Savior is sufficient in my weakness, and I find the grace there to serve like I have been so generously served.   

At the end of the day, even when my arms feel like lifting a cup of tea might be too strenuous, I am thankful that I get to be his mama.  Overwhelmed by it actually.  The rest of the stuff is such a small, and joyous, price to pay to have the enormous privilege of raising our son.   

Soli Deo Gloria,

1 comment:

Gretchen said...

It has been such a blessing to follow you all on this journey! Elijah seems to be flourishing in amazing ways! So fun to see the pictures of the kids cuddling up all warm and cozy. =0)