Additional Needs

Giving everything I’ve got

Posted by Francie Khalaf on 1st April 2021 Additional Needs, Advice & Support, Disabilities

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When we were told of Sawyer’s infection at 2 weeks old we were given the decision to do surgery and take all life saving measures or not.

We decided that as long as he shows us he is going to fight then we will fight along side him.

Sawyer has continued to fight with everything he faces.

In turn, we have continued to fight for him.

It’s important to us to fight like hell for everything that he deserves and that could benefit him.

We have found the best doctors for him, the best therapists for him and the best equipment for him.

We have bought and owner trained his service dog to provide anxiety relief during appointments, med retrieval and seizure alert.

It’s not been an easy path but I know that Sawyer is better for everything we have fought for him to have.

It has easily become my full time job researching the best treatment and what is going to give him the best opportunity to thrive.

It is a FULL TIME JOB.

I spend each day planning our schedule and thinking through what needs to be done.

Each day I am training his service dog, reaching out to doctors or scheduling specialist appointments.

Sometimes it’s hard to understand someone’s situation.

It’s hard to walk a mile in their shoes.

As much as I want Sawyer to be just a kid, he requires full time care and having that extra support of evening nursing or a service dog is not only good for him but extremely important to me for my sanity.

I get a small reprieve when my son’s nurse is working.

I have someone who knows him just as well medically to bounce ideas off of.

When there is an emergency I will be able to count on Gryff (Sawyer’s dog) to get meds for me or hopefully get help.

If I want to leave the house and do something for myself when my husband is working, I can knowing he is safe.

Nursing isn’t a crutch, it’s a lifeline.

When I talk to parents about nursing I remind them that it’s not admitting defeat, its giving the critical time to recharge as a MOM.