Pregnant after having a child with special needs

I have intended to write a post about this for months...and then I keep chickening out and finding reasons not to. With two small children in the house there’s always laundry to be done, food to prep, toys to clean up, chocolate to eat. It’s easy to find an excuse, but at 34 weeks I finally feel ready to talk about it. This is a topic that I have thought about a great deal, but discussed honestly with few people. There are just so many complicated emotions that I have a difficult time distilling them into one coherent thought. I want to convey how excited we are to bring a third child into the world, but also be honest about the fact that it’s been hard and emotionally trying.

Even when we were first starting a family we deliberated about how many children we wanted to have. Cameron has always been in the “more the merrier” camp, while I tend to think practically about things like cost, space in our house, time, logistics. After Noah was born Cameron was still ready for a third right away, but I needed some time to process my feelings and really think about what we wanted for our family. Ultimately we decided we did want another. Our family just didn’t feel finished quite yet. We want a little sibling for Noah that he can both teach and learn from. We see our families now and love that we both have great relationships with our adult siblings. We know that family gatherings are simply more fun with a big crowd. After the decision was made, I was excited albeit slightly anxious. But it wasn’t until I saw the positive pregnancy test that the abundance of conflicting feelings began to make themselves known.

Excitement.  Anxiety.  Fear.  Joy.  Trepidation.  Insecurity.

You see, after you become a part of the special needs community there are so many things you learn. You become acutely aware that having a typical baby with no health problems is a miracle. A rarity even, so it now seems. You realize that screening tests and ultrasounds can miss innumerable conditions or potential medical issues. You can’t live in ignorance of the knowledge of these conditions like you could before. You can’t forget what you know, the stories you’ve heard. My pregnancy with Landon was smooth, easy, uneventful. I didn’t worry at all about complications or the possibility of having a child with a disability. My pregnancy with Noah was the same until about 20 weeks. Then I entered the world of high risk pregnancy, fraught with weekly non-stress tests, growth ultrasounds, hospitalization, testing, bed rest, induction, followed by a NICU stay and the delivery of a diagnosis. Enduring a pregnancy with complications is terrifying. As a mother, one of our main jobs is to watch over and protect this helpless baby. Yet sometimes that ability falls out of our control. This time around, I can’t help but think back on that difficult pregnancy and worry that some of those complications might repeat themselves. It’s been hard not being able to fully embrace the excitement and happiness around this pregnancy. Those joyful feelings are certainly there, but always beneath the surface is that lingering question.

What if it happens again?

The odds of having another child with a chromosomal abnormality in a subsequent pregnancy are 1 in 100. That was a scary statistic to me. One that brought a level of fear, but also overwhelming guilt. The fear was an understandable response, but the guilt was unexpected for me. I think it stems from the fierce desire I have to protect and defend Noah. I wholeheartedly believe that he has just as much to offer this world as any other child and an equal ability to bring value to society and to those around him. His story may look different than that of a typical child, but that just makes him unique and I celebrate that. I know that it’s not the end of the world to have a child with special needs and it doesn’t mean a tragic life for either the parents or the child. I know that you love your child regardless of any disability and that love is not in any way lesser than the love you have for a typical child. I know that your view of disability changes and you learn to focus on seeing the ability rather than the disability.

However...would I go so far as to say that I want another child with special needs? No. In fact, I have prayed over the past 7 months that this child I’m carrying does not have special needs or any medical complications. I prayed the same thing when we were awaiting Noah’s karyotype results.

So how can I reconcile these realities? The fact that I have a child with special needs that I love dearly, but pray that my third child does not face the same diagnosis. This has been the source of the guilt and emotional confusion that I’ve faced during this pregnancy. It feels wrong to hope for a typical child, like it’s somehow an insult to Noah. He is fearfully and wonderfully made. I wouldn’t change him and I love him just as he is. But do I want another NICU stay? Absolutely not. Do I want all the appointments and specialists and surgeries? Nope, I could without those. Do I want this child to face the challenges that I know Noah will? No, I honestly don’t.

I can now say that 7 months into this pregnancy I still feel a mix of the emotions I named earlier, but most of those have given way to one.

Peace.

I’ve slowly been able to let go of the worry and guilt that plagued me and make room to embrace the unknown. I have been able to lean more on my faith and trust that God has a plan for our family. A good plan, although it may not make sense to us now and we may wonder if it’s the best one. I have relished the beautiful moments. Landon asking to feel the baby kick and seeing the wonder on his face at the feeling. Seeing Noah learn the sign for baby and gently touching my tummy in curiosity. Relief that so far the screenings and ultrasounds have revealed no complications.

I don’t know what the future holds for this child any more than I do the other two. The two boys I have been given are pretty great, I should have no reason to believe this one won’t be as well. So for now I’ll try to let go, trust God, and enjoy the last several weeks of my pregnancy. And the excuse to eat more than my share of ice cream while I still can.

Jess

Tagged as: Down Syndrome, Baby
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Comments (15)

Catie R. Johnson

January 7th, 2016

5:36 pm

Thank you for writing this, Jess. I said it when you and Cam announced Noah's birth, and subsequent diagnosis, and you have done nothing but prove my statement true - Landon, Noah, and baby on the way are so truly blessed to have you two as parents. You have a beautiful, strong, (growing!) family, and you have approached raising Noah with unparalleled grace. We've lost touch to a certain extent, but know that I think of you often, and I am so proud of the family you have built. Enjoy your last few weeks, and congratulations!
 

Misty

January 7th, 2016

5:49 pm

Oh my goodness! Thank you for this! My first was a special needs baby and I'm so very anxious about trying again but thank you for the encouragement to trust God. It's so refreshing to hear this!
 

Jeanne

January 7th, 2016

6:36 pm

Voetmann family.....among my favorite people!
 

Abbie

January 7th, 2016

7:25 pm

I am glad I saw your post shared. I have so been there. My son with DS was three when we were pregnant again. When he was first born we also faced the possibility of him having a metabolic condition that he would have inherited from both my husband and I and I vowed we would never have other biological children if that was true (it ended up being a false positive). The prayer was always on the tip of my tongue of please not this time. But then I would look at my son and decided to change my prayer to have God prepare me to be the parent that this new child needed me to be whatever surprises he may hold. What drove me batty was how many people felt they could ask me about prenatal testing and what I was doing this time. We did exactly the same thing as before which was ultrasound only. They would give me strange looks and I even had a colleague offer to take me to get tested so she could know...people are nuts. I hope you continue to find joy in this pregnancy and it far outweighs the fear. Thanks for sharing what so few understand.
 

Jessica

January 7th, 2016

7:58 pm

Thank you for writing this! I have two boys as well, the younger with DS. I have all the same hesitations and fears about having a third. It's so nice to hear that I'm not alone.
 

Lynda and Jim Flaherty

January 7th, 2016

9:49 pm

Beautifully written Jess! You have grown up to be such a wonderful soul. I am sure that this baby will be a blessing no matter what the challenges, past, present or future.
 

Kels

January 7th, 2016

11:00 pm

Sis this is beautifully and wonderfully said...God is so good and I pray for continued peace! Can't wait to spoil my new nephew soon!! Xoxoxoxo
 

Joyce Knock

January 8th, 2016

1:13 am

Jess, Such honest and loving writings! Your 3 sons are so fortunate to have such a mother! Continue to write and share your inner thoughts. They will provide solace for you and countless others!
 

Shawna

January 8th, 2016

8:33 pm

This was so beautifully said! Thank you for sharing your heart & being Real about all those things that we think but never say!
 

LeeAnn

January 13th, 2016

8:00 pm

Thank you for writing. I, too, am pregnant with our third baby and due any day. I have two boys ages 5 and 4. My oldest son was diagnosed with autism last year and I've been told that other children I have may be more likely to also have autism. I also do not wish the appointments and therapies on another child of mine but I'm so thankful for my son and I know that God added him to our family for a reason. God has a plan for all of and I have decided to trust in Him and be the best mommy I can be to my children.
 

Susan Curran

January 26th, 2016

9:10 pm

Beautiful as always Jesse.
Keep us posted!!!
 

Elizabeth

February 17th, 2016

11:09 am

Thank you for writing this! My daughter has Down syndrome and we found out a few weeks ago that we are expecting number two. The thought of all of the pregnancy complications, hospital stays and surgeries again has been a worry for me. It's such a mix of emotions. Glad to know that I'm not alone.
 

Nic

February 17th, 2016

2:09 pm

Thank you for writing this. Our only child has T21. We desperately wish for more children, but the worry and guilt associated with having more can be overwhelming. Your article expressed my feelings exactly.
 

April

February 17th, 2016

6:12 pm

Thank you for the beautiful and thoughtful post. You are correct that it's hard to make sense of all of the emotions. It is helpful to hear from others who are in similar situations. Hope you enjoy this special time for your family.
 

Lane L.

June 3rd, 2017

9:09 am

Thank you for writing this! Like other commenters we have 2 children, the youngest with Ds. We want a third and I have all these thoughts and prayers even before I'm pregnant.
 

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