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Special Needs
Scared (long)
This is my 2nd child, and I am scared. I know that I shouldn't be, and that my fear is somewhat irrational, but I can't help it. When my DS (now 3.5) was 9 months old he was diagnosed with a VERY rare genetic disorder. It's called Hurlers and only 1 in every 100,000 children have it. In fact, when he was diagnosed he was the 9th child in all of MI to have it. In order for him to inherit this disorder both parents have to be carriers of it. And, when you have children there is a high liklihood of passing it on.
After he was diagnosed we moved down to N.C. for 6 months to Duke University Hospital (fantastic place) where he underwent a cord blood transplant. It was very scary. He had 9 days of intense chemotherapy. It was so bad that he stopped eating altogether on the 2nd day, and had to be put on liquid nutrients through tubes that he had placed in his chest, which ran into his blood system near his heart. He lost all of his hair (but not before I shaved it and put it into a mohawk). Then, things got really scay. About a week after his transplant he started retaining fluid. I was having back problems at the time and a stupid doctor put me on a Fentynal patch (which was the SAME drug they were giving Logan for pain) that was too high of a dose, and I was so drugged I hardly knew what was going on. I realized that he was sick, I didn't know that he was at death's door. (I did end up taking the patch off so that I could be with him). He was on oxygen for a while. First they had a mask, then a nasal cannula, and finally a tube that we had to keep near his face. We were lucky, he pulled through. However, there were others that weren't so lucky. This floor was for children that all needed transplants and that all had to go through chemo. Not everyone survived. If they closed our blinds that meant that a child had died and they were coming with a stretcher and body bag to get the child. The blinds closed six times in the 2 months I spent there. I never left my son's side. I would only go back to the house 2 times a week when my ex-husband would come and spend the night with him. But I would only go home long enough to get about 7 hours sleep and then I would rush back to the hospital. After he got out of the hospital he still had no immune system for a year, so I spent the next year with him at home all the time. He could only leave the house to go to the hospital or my parents house. He couldn't be around other children or animals, so I was isolated from my family. I didn't leave his side for a year, sometimes I would force myself to go to the store for something, but I couldn't even handle being away from him for a whole shopping trip. I was too scared I was going to lose him.
Everything turned out fine and now he is a happy, healthy little boy and he will hopefully live a full life (the doctors can't tell us with certainty how long he will live). So, I am pregnant with my 2nd LO. However, I have since remarried and my DH is the father of my baby. The chances of him being a carrier are near impossible, so I am not worried about the baby having Hurlers. What I am afraid of is all the other diseases that I saw, the things that no matter how healthy I am during the pregnancy, it could still get. I just don't know if something happened to this baby if I would be strong enough to go through that again. I cry a lot about it and my DH thinks that I am just being irrational and won't even comfort me when I cry, it hurts.
Does anyone out there understand? If you want to scan through Logie's journey, his website is www.loganjackstout.com, however, his father hasn't updated it in almost a year.
This discussion has been closed.
Re: Scared (long)
What you are saying makes sense, in that it sounds like you have some PTSD. You went through a very harrowing experience. I think some talk therapy could really help you to move past those fears and better enjoy your pregnancy, new baby, and older child.
I am so happy to hear your older child is doing so well. What a blessing!
Congrats on your pregnancy!
Do you think that perhaps getting pregnant could trigger some new emotions that might necessitate revisiting counseling? Maybe talk through some strategies to help calm yourself and think positively?
Good luck!
I wasn't trying to diagnose, but PTSD is really common in special needs moms who went through a traumatic experience with their kiddos. At my first OB appt. with my second child he brought up PTSD. At the time, I said no and that I had worked through a lot of it already. But, now that it is getting closer to the time of the birth of our second child, lots of emotions are coming back. I really thought I was beyond this. Just wanted you to be aware that emotions that you thought you worked through could sneak up on you. I really wasn't trying to judge, only help.
for what its worth, I think what you are experiencing is on some level a part of the normal fears that every expectant mom has, doubled with the fact that your first child had a terrifying illness. You mention that you are diagnosed with Bipolar disorder. A common part of the symptom set is high anxiety. You mention that the new baby might be sick no motter how vigilant you are during pregnancy. This speaks to the element of being scared about what is beyond our control. We all fear this at times in our life.
So, What I would say is to take a deep breath and try to remember the facts. The odds of your second baby being very ill are statistically small. If, God forbid something is wrong, you recieve medical care, your baby will recieve adequate medical care. Try not to focus on the things you cannot control and focus onstead on the things you can. Your healthy pregnancy lifestyle, your loving relationships, etc... Resolve to the fact that you can and will be able to handle any curve balls life throws at you, but odds are there won't be any.