12 Things I Would Say to a Mother of a Newly Diagnosed Baby with Prader-Willi Syndrome

1). Congratulations on the birth of your beautiful baby boy (or girl)!! Your child has made you a mother and has created your first dose of family life. (Or if this baby is a 2^nd or 3^rd child, I’d say), Your family has grown to contain more love, joy…and diapers!

2). You are NOT alone. You have a community of mothers, parents, families, and professionals through your local Prader-Willi foundation, and national foundations. Mounds of support, care, education, and information await you. These angels are ready to help you and hold your hands each step of this new journey.

Contact them right away:   If you are in California, go to these websites–pwcf.org or fpwr.org. The website for the national organization is pwsausa.org.

 3). Sharing your story invites people into your life. Adversity and challenges are not overcome in isolation. Not ever. For fear of “labeling” your child, your knee-jerk reaction may be to NOT share the diagnosis. But, be cautious, because this will isolate you from kind people with generous hearts who will want to help you and support you.

4). Focus on your child’s immediate needs and milestones. Start with an occupational therapist, and physical therapist. Go to a pediatric endocrinologist who will prescribe Growth Hormone. Don’t read too much and don’t focus on the future. “Futurizing” only causes anxiety, worry, and ulcers. You have enough on your plate today and this week.

5). A mentor mom or couple is critical to have along the way. To be able to talk to someone who is in the next stage of parenting a child with PWS is a lifesaver. She/they will offer good counsel, wisdom, and their actual experience. And honestly, you need a place to vent your raw feelings about your extraordinary and unique family life.

6). Seek out “special needs moms” groups in your town or school district. Start a monthly or quarterly dinner out.  These women who are in your same district are your lifelines and will be full of advice for schools, programs, IEPs, teachers, and professional references. Creating this bond with other women who “GET IT” and who you can breathe a collective sigh (or curse word) with, will give you tremendous strength.

7). You are NOT alone. Although you have never heard of Prader-Willi syndrome before now, and no one around you has either, please know you are not alone. Unless you choose to be alone. Which is not recommended. Community is the key to survival, for all of us. For everyone, whatever battle they face. And everyone has a battle of some kind in their family, even if it doesn’t show.

8). Take care of yourself and your marriage. PLEASE take mommy breaks, exercise, drink lots of water, journal, meditate, pray, volunteer, seek out a hobby or keep a hobby you had before. Date nights, couples therapy, and nurturing your spouse are crucial. PWS brings a voracious stress so be extremely proactive in protecting yourself and your husband.

9). One-on-one special dates with your other “neuro-typical” children is also of tantamount importance. So much attention will be forced upon and needed by your sweet one with PWS. Its easy for your other kiddos to feel slighted or jealous or resentful. Help them express their feelings and validate them. Because truly, any feeling you have had they have had or will have. Whether it’s grief, sadness, anger, resentment, or embarrassment, you will all experience it. It’s ok. VERY ok.

Your kids need to know that and to be free of shame or guilt or unrealistic expectations of super-maturity. YES, they will grow up having more maturity, responsibility, compassion, and mercy because of your special story. But be careful of your expectations of them along the way to be MORE patient, or to NOT fight, or NOT get angry with their disabled sibling.

10). It takes grit and gratitude. To mother a child with special needs, requires an extra dose of heel-digging, tongue-biting, strength, and endurance. Fill up your soul with what feeds that. Practicing gratitude is one way, a powerful way, to endure for the long haul. It’s our weapon against becoming bitter in any hardship. Keep a “Jar of Joy” in your kitchen or family room. Keep note of every little ounce of goodness and grace that comes your way.  If you seek it, you will find it every day.  Celebrate every milestone.

11). Take a deep breath and breathe in this incredible new journey you are about to begin. It’s like no other. And your heart and compassion will expand to the size of the universe. Your life will be richer, deeper, and yes, a bit harder. BUT you and your family will be amazing ambassadors to others in crisis. Because…you will know in your soul what crisis feels and tastes like, and for that you will reach out to others in need.

12). You are NOT alone. EVER. And while at times you may FEEL like it, and feel like a tsunami of grief or fear is going to overtake you, there are lifeguards standing by. Your PWS community, your special needs community, are all trained, tried and true, waiting for you along the shores. With open hearts, open minds and open hands. Reach for them. And don’t let go.