Daniel’s Days consist of unusual activity compared to most babies. I guess that’s the way it is with anyone that has a terminal illness; “normal” is much different than most of us know. We are delighting in every moment with our sweet boy. I am always impressed with his joy and peace to adapt to whatever might be needed for his care. In all reality, right now is the “best” time of this disease. Yes, he’s seven months old and cannot turn over or sit up like other children his age. Yet, his eyes are bright and alert. He has the desire and understanding that he wants to get over there but he doesn’t know how to make his body do it quite yet. The sad thing is that once he does get his body to roll over, sit up, walk, or run, he’ll begin to lose the ability. Duchenne’s impacts the muscles, hearts and lungs of course are included in that. It doesn’t take the mind since that is an organ, not a muscle. So while these young men may not be able to move and do as others they are smart, creative, and fully aware of their limitations.
So… what are Daniel’s Days like? Well, he doesn’t have the strength to cough which has taken us on our newest adventure of “normal”. He is getting breathing treatments with a nebulizer here at home. In fact, can I share that story with you? I had seen the doctor and received the prescription for the machine and medication that Daniel needs. I called the local medical supply store and asked them for directions, if they had what we needed, and the price. I was given all the information I needed from a very helpful and friendly voice on the other end of the phone. I was thankful that the Lord had provided us with the funds to provide for all of Daniel’s needs. When I arrived to the store a few moments later, I was immediately greeted by a woman who said, “Are you Daniel’s mom?” “Yes, I am” I replied with a smile. She then began to tell me how she just didn’t feel good about charging us the price she had quoted to me over the phone and had therefore, spoken to her manager about it. They both decided they would like to sell me all of what Daniel needed at cost! She then asked, “Would this be a blessing to you?” “Why, yes! It’s a wonderful blessing. Thank you” I responded. She showed me how to use and care for the machine. I left with such thankfulness in my heart that God would go before us and prepare others hearts to give to us even when we didn’t ask for it. I had the funds, I could have paid cash for the machine but God was letting me know that He had another plan. Every time I look at that machine I can’t help but give thanks to Him.
Well, we got the necessary items home and have been giving Daniel his breathing treatments as needed. At first we had some tears however, after the second time around he began to get comfortable. He’s so precious. He’ll just sit very still, hold his mask and smile as all the children clap and cheer for him. When you have to live with a “normal” that isn’t really normal you learn to make it work and find ways to accomplish that joyfully. Below you’ll find some photos of our sweet Daniel. These days are precious!! We all have so much to be thankful for.
Daniel is getting ready for his breathing treatment
I always let him play with the device for a few moments so he can get comfortable
Daniel’s trying to put his mask on all by himself…. he’s such a sweet boy.
Smiling as all the family claps and cheers for him. He waits so patienty for it to be “all done”
Then it’s time to take our medicine. I’ve found that he’ll spit it out at me if I don’t let him give it to himself at his own pace. Patience in parenting is vital in establishing peace isn’t it? When opportunities allow, it’s critical we allow our children to adjust to their new “normal” at a pace they are comfortable with. I have found in my years of parenting that this can bring security to the child and build a healthy relationship of trust between child and parent. Keep in mind I am not saying that a parent is to be governed by the child. There is a time a parent must tell a child to do something and it needs to be done immediately without hesitation.