Dear New Mother,

It will be ok.

Please remember that life can change in an instant.  There are people already in your life that you love unconditionally, and you would go to the ends of the Earth for them…. don’t worry – you will feel that way about this baby also.  It is ok to be mad at God.  Most people who have traveled this road before raged against him at one point or another, however ~ do not let this rage consume you.  If you had a relationship with him before, feel free to pray, “why?” … just don’t stop praying.  At some point he will answer your questions and heal your heart.

 

Don’t blindly trust what you hear.  Even if it is from a doctor.  People are all fallible.  Doctors make mistakes.  You are the best expert on your child.  Your mommy gut will not fail you.  Listen to what doctors have to say, ask questions, ask more questions, go home – think about things, and make the decision that sits well in your heart.  Your best resource is going to be other parents.  A doctor, in 2010, told us that Alexander would be terminal and to let him “pass gently to ease his pain.”  This wasn’t a doctor from 1950 … we were devastated because we felt the doctor was talking from expertise.  The doctor was speaking about a syndrome she had never seen based on research from 1950.  Since then, Alexander eats, smiles, coos, socially interacts, giggles when he is happy, and gets angry when people take something he wants.  Almost all of Alexander’s Wolf Hirschhorn friends are walking ~ at least with assistance.  And, honestly, is it the end of the world if a child doesn’t walk?  Use the other parents as a sounding board.  Then you have access to opinions from people from around the world.  The medicine that helped Alexander digest his food? I found out about it from another mom and went to several doctors until I found a young guy who was up on his research and knew this drug was used for G.I. emptying. I would not have been able to do this without the community of support of people who are going through the same thing.

 

Get your child therapy and treat your child normally.  This is probably one of the most important things I can tell you.  If you see your child as an outcast, so will others.  Throw away the chart of “appropriate milestones.”  Call Early Intervention.  Get yourself a copy of Gross Motor Skills for Down Syndrome and Fine Motor Skills for Down Syndrome.  These will help to guide you in teaching your child how to reach milestones.  Some milestones we don’t realize are milestones because they happen so quickly for other children. (Some therapy ideas can be found HERE.) Use these tools ~ but don’t let these things rule your life.  This brings me back to the normalcy of it all.  Get a good reclining high chair – that sits up to the table.  A great one is from Fisher Price.  Put your child in it for every meal.  Alexander has sat at the table with us for every meal since he was tiny.  Even though he didn’t eat, he watched us eat and socialize.  We talked to him.  How can I expect him to eat pizza with us someday – if he never sees how amazing pizza with the family is? Alexander goes almost everywhere with us.  Alexander is not the outcast of our family.  Raymond and I never talk about “we can’t do this” because of Alexander in front of the twins.  The twins are always encouraged to include Alexander to do things with them.  The 3 kids take a bath together…. every single night. Simple things like this help to solidify your family.  I expect high things from Alexander.  I will love him no matter what, but I will continue to hold high standards for him.

Lean on us when you need a shoulder to cry on. We have been there. We understand. However, let me caution you.  You must try to find some happiness in life.  I say this cautiously because…. we want you to share those dark moments when you need support.  In the early days and months, people will come to you with open arms and hold your hand as you cry.  Because we have all been there. Just try to make sure you aren’t sinking into the abyss that threatens us all.   We want to help you out of the darkness.  We want to listen to you, cry with you, stand strong with you.  We all understand.  But none of us can sink with you.  This may seem like a contradiction, but this is sound advice. Even if it is a struggle, try to find something happy every day.  If you can’t do this, please take some time to talk with someone… to find happiness.  Your life has changed drastically, so it may take some time to fully accept your new reality.

 

Stay connected.  Don’t let this syndrome become the end all to be all that rules your life. Again… it may sound like a contradiction, but you have to find a happy medium.  You can acknowledge that your life has changed without becoming completely immersed. And finally…

 

Love your child. Love. Your. Child.  All children are gifts from God.  You could have a child and realize later in life they were autistic. You could have a child and realize later in life they were going to be wild and sneak out, etc….. you would still love these children. So love this child.  Give yourself some time to absorb all this information. Everything will be ok. You will love this child.  And this child will love you. Wait and see…..

 

14 Responses to Letter to a New Mother

  1. JillH says:

    Thank you for posting the letter, this is great for all new mom’s to read and keep. I wish I would have read it when my son was diagnosed 6 months ago.

  2. KevinO says:

    Kristen- very well said. You’ve summed it all up and it will mean a lot to those that will soon be walking in our shoes. Thank you for sharing this with all of us.

  3. isdadoinks says:

    This is powerfully beautiful!
    Thank you for sharing!

  4. jbt says:

    amazing wise words!!!!

  5. Peggy says:

    Hi,I have an 18 month daughter with WHS. I am a registered nurse and am quite familiar with medications that enhance g.i motility. I have discussed some of these medications with my daughters gastroenterologist, as my daughter also has delayed emptying. You discussed a medication that you are using to address this issue and I’m curious as to what it is called and how it is working out for you. The medications I have brought up so far to the doctor he is not interested in starting. He has only recommended probiotics. Therefore, I am wondering if your medication is something we haven’t covered yet. If you could be so kind to provide that information I would appreciate it.

    Peggy

  6. Kristen says:

    Peggy. We use a low dose of Eurothromyacin. One of the side effects is stomach ache. This is a side effect of a FULL dose of Eurothromyacin. We use a very small dose – 1 ml before feeding – and the side effect of a small dose can be gastric emptying. Honestly, it is a craps shoot. You have about a 50% chance it will work. And you might have to fight for it. One GI doctor said, “I can give it to you but then you will just have to lug around a fat baby.” Needless to say, we didn’t see him after that. I also had some people recommend Reglan – I would say do not go that route. The risks are too great. We’ve had a great time with Eurothromyacin. Good luck.

  7. oliviagrace says:

    Thanks for posting. As a new mom with a 9 week old, your post was exactly what I needed to share my story.

  8. baby_clover says:

    Thank you for this post. I just posted my story. Although I have not given birth yet, I am loving my child. Your words are so encouraging and uplifting

  9. Simone G. says:

    No words to describe how I am thankful to read that letter. Bless your heart.

  10. Thanks so much for writing this letter. It made me cry. xoxo

  11. Martha J. Knott says:

    Thank you so much for your letter. Very encouraging. Just found out our new baby granddaughter (our first) has WHS. She’s already come through many challenges. We are hopeful and praying for her and her sweet mommy and daddy. God bless you.

  12. Letty says:

    Here we are, one and a half months after getting WHS results….I wish I had read this letter when I first got the news. My son Nathaniel, is 15 months old and I am very accepting of this syndrome. When he was first born, because of his other conditions I was afraid to take him out. I didn’t want him to get sick…I got over that soon enough. Then one and a half months ago, I got the lab results (over the phone) and didn’t really understand what WHS was. After the geneticist and I got off the phone I immediately got online and ALL I could read was negative information. It wasn’t until my friend, who teaches special education students, told me about this website and I was finally able to read good information and personal stories, that I felt at ease. I know that God would not give us anything we can’t handle. An attending physician once told me,”Special parents are given special babies” and that has helped me in so many ways. This letter will ALSO do for me both now and in the future what those “words” did for me months ago. I’m still crying because I was so moved by this letter. Thank you so much and good luck to you and your family.

  13. shirley bidnick says:

    You seem like a practical no nonsense woman, who has learned how to think optimistically and realistically. I am sure Alexander has not choice but to do well.

  14. DIANE PIERCE says:

    It took my husband and I many years to realize just how much of a special gift from God Joseph was. He will be 17 years old in Feb. our children are as close to God as anyone here on earth. I do not say this lightly. You may already have witnessed their ability to change lives even an brief moments or the darkness in people around you lives suddenly turn light when he is around. Our kids are spiritual giants and walk hand in hand with the Lord. You

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