To the Potential Guardians of Our Son With Special Needs
We would like to ask you to be our son’s guardians in the event something happens to us. You can definitely decline if you so choose, but before you decide, we’d like to tell you what you would be getting yourselves into.
Caring for him isn’t an easy task and can often be exhausting. There will be sleepless nights, hectic days and moments filled with so much worry and anxiety that you might succumb to tears in your room. The nights of interrupted sleep won’t lead to a nap the following day. You’ll still need to chauffeur him to therapy appointments and take mental notes of new exercises to perform on him throughout the week. You won’t be able to rest when and if he decides to nap for you. There will be appointments to coordinate, food to blend, social workers to call and insurance companies to follow up with. Oh, and let’s not forget housework, laundry, other children and your social life that is virtually nonexistent.
There may also be days when you don’t take a shower and, quite possibly, may be wearing the same clothes from the previous day. At 3 p.m., you might realize you haven’t brushed your hair or your teeth yet. You’ll pray no one notices.
Speaking of praying, I believe you will also become close to God, Jesus Christ or any other higher power of your choice; you’re going to need it. I believe praying for health and healing will become a daily ritual, and sometimes begging for the strength to get through another day will be top of your prayer list.
You’ll also need to be strong and brave. Strong enough not to get upset at someone who stares at him or whispers and points in your direction. Brave enough to hold your head high and not let anyone pity you or him. Strong, brave and proud are definitely requirements. You’ll need to be proud of this little boy for who he is and embrace all of him.
You will be required to celebrate every accomplishment he makes. He has yet to sit on his own or utter a word, but you better believe that when he does, there will be a large party in his honor.
Get ready to be patient because progress can be slow. But you’ll marvel at how he continues to work hard with fierce determination and never gives up. The challenges he faces might bring the most heartache, but he’s the ultimate source of happiness. When he smiles, you will feel so much joy. I believe there’s definitely a piece of heaven in his smile.
He smiles with his entire being and means it. There’s no faking it with him. When he laughs, you will forget all of your worries, and I believe you will thank God for that moment. You’ll set aside your list of “wants” and simply be thankful.
He loves unconditionally and without expectations, and that is what we require of you. Hug him, kiss him, cheer him on, never give up and love him beyond measure.
This may be the greatest challenge of your life and one that you would never regret. You’ll learn more about yourselves and others than you ever imagined. You’ll learn what it truly means to love and be loved. Unfortunately, you’ll also become familiar with disappointment and grief, but his smile will trump that any day.
This may be one of the greatest responsibilities anyone will ever request of you. And in our eyes, it’s also the utmost gift.
We can talk about the “package deal” (two big brothers) at another time.