So the day is almost here. Surgery day! Peanut will check into the hospital at 6 am on Thursday morning to have her tonsils and adenoids removed. I know, this is a simple procedure and its not a big deal. Let me tell you, to a mama of a 2 year old…this is a big deal!!! We have to hand our baby girl over to strangers and pray that they will return her to us safely.
I just finished reading this article… Anesthesia & Down Syndrome and now my anxiety is even higher!! My husbands response was “Stop reading these articles, pray and trust that God will take care of her!” I know that God loves Peanut even more than I do. I understand that He has a plan for her far bigger
than I can ever image. I just need to stop focusing on
myself right now…and remember my job is to rely on Him.
Please keep us in your thoughts and prayers this Thursday. We for sure have to stay one night however the Doctor did tell us there is a possibility of a 2-3 night stay. I will try to keep you posted.
When Peanut came into our lives we were fully aware of her diagnosis. We had the option to say no. We had the option to say Down Syndrome was not for us…and no one would judge or really even know. Truthfully, a few other families before us said no. Thank goodness they did…because if not we wouldn’t have had the option to say yes.
I’ve recently spoken to a couple of mamas who were struggling with their prenatal diagnoses. They know when their sweet baby is born, they will face a multitude of issues. They have doctors and health care providers constantly asking if they would like to terminate the pregnancy or set up an adoption. As if this child is less worthy of love and life because of the Down Syndrome. Instead of these mama’s receiving support from their doctors, they are pressured into decisions they are not prepared to make.
You see, when a new family receives a diagnoses of any kind, especially Down Syndrome, they need to first grieve the loss of the child they had prepared for. This is extremely common. Some new families struggle bonding with their children right away, some cant seem to see past the diagnoses, and some cry for days on end. All of these reactions are completely normal. No one wants their child to be “different” in the world. We never want them to have to see specialist after specialist, prepare for surgery at young ages, work harder than anyone to just achieve simple milestones. The idea of having a special needs child is terrifying, but let me tell you, the joy overcomes the fear!
I want to speak to the new mama’s out there. I know right now you are scared. You are feeling alone, secluded from your friends and family, you feel lost and worried that you will fail your child. You are confused about the services your child needs, scared your mess something up and will affect them forever. You are terrified of the future, not just theirs…but what will yours be now? You are scared that no one will love and accept your baby as much as you do! I know you are feeling a world win of these and more, because I have felt the same. But I want to tell you, you are not alone! You have a community of mamas at your finger tips. They will cheer with you at each new milestone, they will worry when doctors apts come up, they will cry surgery is needed. They will pray and love your child almost as deeply as you do. They will send you encouragement and love, because no one else in the world understands what your facing as much as they do. You are not alone! Your child will grow and become a star in the world. A special piece of humanity that God just had bigger plans for. You will experience more love and excitement than you ever have faced. You will learn to see joy in the smallest achievements and feel love when words cannot be spoken. Your child will make you stronger than you ever realized you were and help you love even deeper.
I want to leave you with this poem. Its kinda been passed around the DS Community a bit. But it is there perfect example of what it is like to be in this special club. Hold your head up high mama! God pick you out of everyone to raise this special angel. Be proud of this honor! Not many people get to join our club 🙂
Recently Peanut had a cancer scare. We didn’t share this info with very many people, because we were praying it wasn’t a very big deal. After attending the Down Syndrome clinic this past May, one of the specialist wanted to run blood work. Remember I mentioned they tested her for Celiac Disease? Well that came back clear and normal, however at the time her thyroid hormone levels were very low. This could mean something simple as hypothyroidism, where medication is helpful. To something more extreme as thyroid cancer. Our doctor wanted to run testing again to make sure that Jana just wasn’t fighting an infection at the time.
We waited two weeks to re-take the test, and then another week to get the results back. To tell you our stress level was through the roof is an understatement. We were so terrified of the possibility of cancer. I broke down completely instantly when I pictured my beautiful girl going through treatment, loosing her hair, having to fight non stop. I’ve witness other families go through the same thing. My heart as always broke for them. Suddenly we were facing our biggest fear. Thank the Lord, all the test came back clear! They are going to be testing her again in 6 months to insure, but as of right now she is healthy!
So what is the point of sharing this? During this very stressful time, I gained some clarity. Already we have had people look at our lives and somehow pity us. They see the stress, the doctors appointments, the sleepless lights and think we somehow regret bringing Jana home. During this cancer scare I thought “Would you go back and change it?” My answer was no. I feel like God brought Jana to us. He had a plan and purpose for her being in our lives. And even if my time with her is cut short, even if the worst happens, having her is still worth it! We would never even consider going back and telling our social worker no. Jana has brought so much joy and happiness into our lives and honestly, we wouldn’t change anything about who she is or the experiences we’ve had.
Life can change in an instant. None of us are guaranteed another day. I know as Jana gets older even more scary events will come our way. This coming August we have to hand her over to a surgeon for her tonsillectomy/adnoid removal. My point is, don’t judge a family by the struggles they are facing. See past the pain and see the determination, the love and the faith that is getting them through it.
I’d like to introduce you to Laura. She is a beautiful mama I have had the honor to befriend through our Instagram Community. Her little boy Mikey is just a few months older than Jana and is the cutesiest thing 🙂 I’ve asked her to share her story with all of you. I hope to feature a new mama every week or so. I’m so proud of the DS community friendships I’ve developed and know that these mama’s have a lot to share!!
I found out I was pregnant with Mikey in the beginning of July, 2014. My husband and I were excited! We already had names picked out for either gender. My Dr offered to do genetic testing, but I declined it. We had a twenty week scan to find out the gender of our first baby. Our fingers were crossed for a boy. We really wanted our first baby to be a boy. The tech put the results in an envelope. We found out our baby was a boy a few days later at a gender reveal party. We were so excited!!!
We went to the birthing center on March 28, 2015 to have our baby boy. I was so nervous and excited! 17 hours later at 11:59 pm, Michael James Snyder entered the world! I was so happy and exhausted. All I could do was stare at him! He was perfect and he looked exactly like his daddy!
The next morning the pediatrician came in to do an examination on him. When she completed the exam, she told us that Michael had Down Syndrome. She didn’t offer any information or assign us a social worker. She just walked out. I put on a pretty brave face, but I felt shattered. My husband was solid as a rock, but I was a hot mess! It wasn’t because he had a disability, I was just very scared. I didn’t know what to expect. I had no idea that what terrified me at the moment would turn out to be the biggest blessing and our greatest adventure!
Michael has some developmental delays and some health issues, but he has a wonderful team of doctors and therapists that help us to help him reach his goals. Those are things we do to help keep him healthy and to reach his full potential.
Michael is such a pure joy to be around! He has shown us what true love is. He has such determination and grit! He works hard every day to do things that his other baby friends can do without a problem, but he always does it with a smile on his face! He’s taught us so much.
We recently had another baby. Michael adores his new baby sister! He showers her with hugs and kisses, brings her a toy or her binky when she’s sad, and steals her formula if I set it down where he can get it. He tries to crawl in her swing or bouncer with her to cuddle, then he’ll steal her blanket when I’m not looking. They smile at each other one minute, then make each other cry the next. He’s a typical big brother. I can see already that they will have a strong bond. I can also see them getting into a lot of trouble together. Hey, someone has to keep mamma on her toes, right?
There are many days that go by that I wonder “What if?” What if I would have known about his diagnosis before he was born? What if I would have known what I know now after he was born and we received his diagnosis? Would I still have spent the first few months crying at some point each day? Would I have been so afraid? Honestly, I don’t know. I believe that God does everything for a reason. I can’t go back and wonder “What if?” When I know that through all of this we have become stronger. My relationship with my husband is stronger, my relationship with God is stronger and I’ve developed amazing friendships with so many families in the Down Syndrome community.
I think the most important thing I would tell any parent that has received a Down Syndrome diagnosis is: Process those emotions and don’t feel guilty about it. It’s okay to grieve. It’s okay to be scared. It’s even okay to be a little angry. At some point all of those powerful and overwhelming emotions will turn into an incredibly strong love for your child. Support, encourage and nurture your baby! It takes a special person to raise such a unique individual! Sit back, relax and enjoy the ride!