I know I stay pretty positive about having a special needs child and I get a lot of praise for it. The truth is I am pretty positive about it. We have good days and bad but overall I adore my son, he is such a wonderful light in my life.
With that being said raising a child with CP is hard. Today I was featured on the CP Facebook page about moms who blog and it made me think about awareness and sharing more of my story. I feel like I need to show all sides of special needs to really put it out there.
Brayden is at the age where he looks different and people take notice that he is different. Most don't ask but I do notice when people stare, kids are less subtle about it. I understand the curiosity and before I had B I used to stare too, it's human nature to be curious. When B gets his wheelchair it will be more obvious that he is indeed different. It does bother me when people stare, I'd be lying if I said it didn't, but as time goes on I notice less and less. When I see a special needs kiddo I stare, not because they are different, but because I now have a different admiration for them. Also, I like to check out there gadgets, chairs ect. to see if we could use that.
The biggest challenge right now is feeding. Brayden is only bottle fed and has plateaued. He will only eat for D and I and only in a quiet room, preferably at home. We can't feed him at restaurants and it's challenging at others houses. This allows us 4-5 hour windows to do things or be gone when we have a sitter. Bottle feeding a kid for 20+ months is exhausting. I would give anything for him to progress in this. This has led us to decide he needs a G Tube. (more to come on this topic) I am waiting on his GI nurse to schedule the surgery.
Taking care of B is physically hard on me. I am in decent shape but lugging around a 27 lb kiddo who is essentially dead weight is tough. When we go places if he's not in the stroller he's on my lap (or dads). I need two hands to hold him. I'm picking him up multiple times a day. Some days I lay on the couch at night and my back aches. I know there will come a point when I can't physically care for B the way he needs and I feel scared-sad about what that looks like. I have a while but it will come one day.
Play time with B is different. We play the way he likes and is able to play but I feel sad I can't chase my toddler around the park or play trucks. I put toys in B's hand and help him shake them, he smiles as he enjoys this, and he puts them in his mouth. He makes small gains and to me they are ginormous gains. Hitting milestones for us is a huge gift and something we don't take for granted.
Brayden still sleeps in our room at night in a pack n play (which he is quickly outgrowing). The reason Brayden does not bunk up in his crib is because he moves around and will wedge himself in the side of the crib/pack n play and can't move himself out. With him being next to us we can hear him and move him. Since he doesn't cry if he were in his crib we wouldn't know if he was stuck. I need to work with his special needs Dr on a sleeping solution for when he's older and now. Naps during the day he does fine in his crib because I can see the monitor.
Dr visits and therapy are a blessing and a curse. We are so grateful to have wonderful therapist that come to the house and at the same time I schedule my day around being home at xx time for therapy 4 times a week. The same applies with his Drs. We love all his Drs and they help our lives run smoother but his specialists are an hour north and we go 2-3 times a month which adds up and is a lot of work. The older he gets the less we go but it's still a process to go to the Dr.
Financially a special needs kiddo is a challenge. We have excellent insurance but we pay a pricey monthly premium. Without this insurance we would be in trouble or on state aid. Even with great insurance they find loop holes for hidden fees and deductibles so our monthly medical bills add up. I feel like once I finally pay off one I get sent another. B is on a special diet of Pediasure which is expensive. He eats 3-4 bottles of it a day and it adds up quick.
My intention is not to 'bitch' about life with B I just want to capture the not so positive side of things. I definitely attribute my positive outlook to the support of Derek (and family) and my growth work I do with life couching. Having a support team that allows me to share the anger-hurt-sad-scared allows me more space for the joy. Like with the
Holland poem I posted, I don't want to wallow in the fact I didn't go to Italy, I want to embrace Holland and all the wonderful things there. And although the road to get there is long and hard...it's so very beautiful along the way!
